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Read the stories of people affected by breast cancer everyday and please share and support #not2ndbest. Tell us your story and we'll add your voice to shout for more awareness, research and support for SBC.
Alison
Alison Price
Bridgnorth
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
27th September 2022
Current treatment line:
I am taking daily bisphosphonates (ibandronic acid), oestrogen blocker (aromasin) and targeted therapy (Ribociclib).
How does secondary breast cancer affect your life?
I am 63 and my life has totally changed due to secondary breast cancer. I had primary breast cancer 20 years ago in 2002 when my children were very young and was fortunate enough to to get through it. I couldn’t believe it came back after so long (extensively in my bones and spots on lungs) and have since learned lots about recurrence. My chronic back pain was misdiagnosed for nearly a year by my GP which is something I have challenged in a restorative way to hopefully raise awareness and bring about change.
I thought I was a healthy person, working full time as a social worker, quite active with walking etc however my diagnosis has changed all this. I still struggle with pain and mobility and am getting used to this new life - a much slower pace, still trying to do as much as I can. Sadly I will be taking early retirement which will be a huge loss yet I hope to find other things to do such as volunteering when I’m ready.
What advice would you give to someone newly diagnosed?
Allow yourself time to go through the inevitable emotional rollercoaster including huge grief. Your feelings might change by the minute. Cry all you need to. Talk if you need to and don’t be afraid to have quiet time to yourself. Your family & friends will want to help and might need help too.Use your professional support - I was fortunate to have an understanding oncology nurse early on. No question is silly or too small and they know that it’s a tough time.
I read all I could although some people advise against! I avoided statistics and stuck to medical journals, BBC podcasts such as You, Me and the Big C, and George Alagiah’s podcasts, and helpful sites such as this one! Also tried some relaxation classes and discovered reiki which I find invaluable.
Looking back I wonder how I got through those months and it’s true life will never be the same, however there is hope and you will find your way through.
Sarah
Sarah Flourentzou-Lucas
Weston-super-Mare
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
26th November 2020
Current treatment line:
Kadcyla every 3 weeks.
How does secondary breast cancer affect your life?
I think it makes me stop and appreciate every day I am here. Before this I was always extremely active, extremely busy and never really stopped. Now I feel I have no choice, the treatment slows me down and in some ways this is probably a good thing. I try my best to keep life as 'normal' as possible but this can be difficult. I continue to work, as it is an important part of my life.
What advice would you give to someone newly diagnosed?
Don't use Google! The road is rapidly changing and so instead if looking at 'what was' let's be the 'what will be'
Looking at different aspects of your life can feel really empowering, I changed my diet and put a huge emphasis on my wellbeing, this enabled me to feel I had some level if control, which worked really well for me. I would suggest finding the things that work for you.
Tracy
Tracy Lynn
Uxbridge, Middlesex
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
28th February 2020
Current treatment line:
Following EC + Taxol iv chemo, operation & radiotherapy I’m now on Ribociclib, Letrozole, Denosumab injections and adcal +d3
Diagnosed straight to stage 4 with bone mets.
How does secondary breast cancer affect your life?
Sometimes I think it was just a bad dream as I “feel normal” but then when I try to do some tasks my body doesn’t always follow! I’m tired a lot more but working full time still and have immense support from my family, friends & colleagues.
I do get a bit upset when asked when do you finish treatment even though I’ve explained it’s incurable but treatable and treatment for life - which is a good thing (from our view) if you think about it.
What advice would you give to someone newly diagnosed?
Allow the tears & sadness you may initially feel, lean on friends and family. The best advice I was given and want to pass on was think of yourself like a bank account, if you keep taking money out you’ll run out so need to top it up. When you need to dig deep to get through some days you need to top yourself back up so find things that do that. I now paint (by numbers lol as I have no talent) and also cycle (electric as my body isn’t quite so strong) physical & mental well-being plus a damn good sense of humour will get you through each day xx
Stephanie
Stephanie Felks
Huddersfield
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
3rd December 2020
Current treatment line:
Currently on Zolodex, Fulvestrant and Palbociclib
How does secondary breast cancer affect your life?
Daily pain
Loss of future
Daily worry
Fear of death
Fear of meds not working
Loss of confidence
Loss of fitness
Difficulty looking after my dogs
Dealing with others pain (friends/family)
Retirement from work
Unable to plan
Nobody to truly talk to
Feeling like you are screaming in a room full of people but, nobody can hear you shout
What advice would you give to someone newly diagnosed?
Break everything down into smaller bits
Take each day as it comes
Go with your emotions
Try to look at the smaller here and now
Make lists
Danielle
Danielle Lilley
Manchester
Secondary breast cancer has affected me as a:
Child
How does SBC affect you?
My mum was diagnosed with estrogen positive, lobular breast cancer to the bones in September 2020 after her sacrum fractured. It was easily the worst time of my life. My mum had gone 10 years since her primary diagnosis and we thought that nightmare was long behind us. I visit the secondary breast cancer forum on the Breast Cancer Now website regularly which has been a fantastic source of information and support from other ladies in the same situation. Now that my mum has settled into treatment of Ribociclib, Letrozole and Denosumab we are more hopeful and try to carry on as normal, but it is a constant source of worry and anxiety. Especially around her scan time! I try not to think too far ahead as the future seems too scary!! So we live for the here and now.
Gill
Gill Cory
Southport
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
21st August 2019
Current treatment line:
Palbociclib, Letrozole and monthly Denosumab injections
How does secondary breast cancer affect your life?
I suffer from xtreme fatigue caused by the medication, so I need to plan rest days into my week, particularly during the last cycle of palbociclib each month. The 3 monthly scans causing "scanxiety" waiting for the results and being scared stiff the disease has spread. I have "down" days when I reflect on how long I may have left to live and wonder will I be around to see my children married and grandchildren grow up, but then I try to be positive and focus on all the new treatments and trials that may be available in the future that could help me live for a long time yet!
What advice would you give to someone newly diagnosed?
Don't Google your symptoms! The results are often so out of date. Everyone is given individual treatments, so what is right for someone else is not necessarily right for you. Be kind to yourself and put yourself first. If you need to rest, do it. Don't feel you have to keep putting up an appearance for others benefits. Learn to say "no" more often. Try to be positive. MBC is no longer the death sentence it was and join the Make Seconds Count Forum which has lots of support from so many lovely people who are experiencing the same issues and worries. A problem shared is a problem halved!
Claire
Claire Edmonds
Chichester
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
1st September 2021
Current treatment line:
Letrazole
Zoladex
Denosumab
Ribociclib
How does secondary breast cancer affect your life?
My body hurts quite a lot, just doing the gardening I have full on body aches for days, my body doesn't bounce back too quickly. I think its part of the menopause symptoms because my ankles also get stiff when u get up in the middle of the night to pee. I find I also get super tired very quickly.
What advice would you give to someone newly diagnosed?
I would advise, allow yourself to feel your emotions, it is really scary when first getting diagnosed, but once you allow yourself to accept what's happening, you will then realise it isn't as scary as you think, you can live with this disease, other woman have been fighting on for over 20 years. Don't allow yourself to focus on the bad news and compare yourself to those who sadly pass as it can mess you up mentally. We are a great community of supporters and you're not alone ❤️
Suzanne
Suzanne Williamson
Liverpool
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
24th May 2019
Current treatment line:
I am due to start Eribulin (Halaven) this coming week which will be a 3 weekly cycle, 2 weeks treatment & 1 week off. I also have Denosumab (Xgeva) & Goserelin (Zoladex) injections every 4 weeks.
How does secondary breast cancer affect your life?
I try not to let it affect me too much but tiredness is a main factor. I try as much as I can to be as active as possible.
It took away my dream of having a baby but never say never
What advice would you give to someone newly diagnosed?
Listen to your body - self care is important - look into alternative therapies - good support network - persevere with cool cap if that is an option - allow yourself to feel how you feel
Rebecca
Rebecca Trueman
Bradford
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
25th October 2016
Current treatment line:
Petra & Herceptin every 3 weeks, currently infusion but start the injection next cycle.
How does secondary breast cancer affect your life?
I was lucky enough to medically retire from a career that I loved as I just couldn’t cope with the side affects and holding down a full time + role in a senior position. Apart from side affects, I’m very active at the gym everyday and love life as best as I can. I have 3 teenagers that keep me on my toes and a wonderful family and amazing friends. I try to not think about the future and enjoy the present.
What advice would you give to someone newly diagnosed?
Don’t google, take each day as it comes. You are stronger than you know and there is always hope. You are not a statistic and most of them are so out of date. Be kind to yourself.
Tam
Tam Scott
East Sussex
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
16th May 2021
Current treatment line:
I’m on Leterazole, Palbociclib, Xolidex, Denosimab, pregabolin, omeprazole, ibuprofen, paracetamol and morphine with regular therapy through the Sara Lee trust.
My diagnosis? Her 2 positive breast cancer that has secondaries in hips and spine.
How does secondary breast cancer affect your life?
When I was diagnosed I could barely breathe on my right side and was wearing pain relief harnesses, the first year was horrible trying to navigate grief for my kids (8 and ten at the time) and pain. I’m pissed off that my future might be limited and ache for the days I will no doubt miss.
With therapy I’ve finally turned a corner and am learning to live with the pain - and the diagnosis. My movement has improved and I’m doing stuff, not wanting to be naff but really trying to take it all in and enjoy and celebrate being here as much as possible. It’s is a real Debbie downer this cancer mark but there is humour and solidarity and some tell me, hope.
In many ways Cancer has given me the wings to get shit done and live.
What advice would you give to someone newly diagnosed?
There is so little clarity when you are freshly diagnosed, the words coming out of the team just sound like jaberwocky.
Stay clear of the internet in the early hours especially as the information on there is so ancient and can leave you reaching for the funeral home leaflets.
Take friends or partners with you to appointments so they can translate.
The meds will calm down I promise, the late night rave sweats you will get used to.
Tell anyone who says “you could get runover by a bus” to totally fuck off.
And lastly try and choose your own goals and happiness over the grotty shadow of this relentless bugger of a disease.
Fiona
Fiona Mcfall
Northern ireland
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
24th August 2020
Current treatment line:
Palbociclib, letrozole, denusomab and rivaroxiban
How does secondary breast cancer affect your life?
I'm much slower than I was and cant be as spontaneous as I would like but, to be honest, I try not to let it affect me. I love spending time with my family and my scooter family
What advice would you give to someone newly diagnosed?
Stay calm and don't overthink it. There are lots of treatment options out there for us to try. Get into a positive support group you will learn a lot from the women (men) who have come before you.... ALWAYS STAY POSITIVE
Lisa
Lisa Jones
Mold, North wales
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
22nd July 2020
Current treatment line:
Fortnightly immunotherapy and 3 monthly scans. I was on abraxane with the immunotherapy but I developed peripheral neuropathy and they had to stop the chemotherapy.
How does secondary breast cancer affect your life?
I have 3 children aged 4 years to 14 years. I live with constant fear and heartache. I also struggle physically as initial cancer started in 2017 and ive endured a lot of treatment and many hours of surgery. So im restricted how much I can do and join in with. Medication and menapause also contribute to this. Regular appointments and treatments also take over day to day life and I suffer extreme tiredness. Mentally its the worst though.
What advice would you give to someone newly diagnosed?
To research as much as possible. Seek help and advice from support groups theyre amazing. Never settle if you don't agree with the answers. And live your life as much as possible. Treatment needs to fit in around you not you fit in around it.
Juliet
Juliet Bain
Sutton Coldfield
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
3rd August 2020
Current treatment line:
Currently on my third treatment line - have had EC chemo, Paclitaxol and now on Eribulin.
Mastectomy couldn’t go ahead as too many secondary tumours in my lungs.
How does secondary breast cancer affect your life?
I try to get on with things best I can, but I’ve had to give up my job, I can’t do the level of exercise I did before and seem to have continued problems with neutrophil counts and infections. I’ve had sepsis twice and more hospital admissions than I can remember. I am blogging my journey in an attempt to help others in my situation and I do try and be as upbeat as I can.
What advice would you give to someone newly diagnosed?
Trust your gut - if you think something doesn’t feel right, then ask - get it checked, don’t assume it will be ok. You know your body better than anyone else, so follow your instinct and don’t let anyone tell you otherwise.
Also, you rule Cancer, don’t let it rule you. If like me, your prognosis is pretty rubbish, don’t sit back and accept it, get out there and live your life - you decide how cancer is going to effect you (ok, not always, but as much as you can!!) and you decide what fun you’re going to have.
Lynne
Lynne MacLennan
Cupar
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
27th May 2020
Current treatment line:
Currently having chemotherapy treatments after chemotherapy treatments last year, 2 surgeries and 19 radiation treatments this year.
How does secondary breast cancer affect your life?
I was diagnosed with triple negative breast cancer May 2020 and after having chemotherapy, surgeries and radiation, I’m back on chemotherapy treatments. My cancer was reclassified incurable but treatable this July. A diagnosis I’m finding hard to deal with. Knowing how difficult it is to treat, it worries me but I try not to let it define my life.
What advice would you give to someone newly diagnosed?
Take all the help offered you e.g. Macmillan, Maggies etc. I’m now utilising these services and it definitely helps. Also, be prepared to lose support from some friends and family - always remember that it’s their fear of cancer and it’s not your fault.
Rosaline
Rosaline Cable
Solihull
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
13th July 2020
Current treatment line:
Palbociclib and Letrozole
How does secondary breast cancer affect your life?
Have very slow days, treatment that I am on is kinder than some but there are bad days, mentally a challenge sometimes, not always feel supported as certain doctors do not understand it enough
What advice would you give to someone newly diagnosed?
Stay positive, life is not over, press for any treatment plans you can have, keep fit and eat healthy and join groups that understand as not everyone does.
Ericka
Ericka Moon
Newark Nottinghamshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
8th February 2022
Current treatment line:
4 week cycle.
Palbociclib 125mgs daily for 3 weeks, then one week off and repeat.
How does secondary breast cancer affect your life?
After the initial shock of diagnosis, I was very scared for a couple of months until I settled on a treatment regime Even that was scary at first adjusting to how your body reacts to the new challenges of the pills injections etc. Life at first seems to become a series of hospital appointments, and you fit real life around it.
And then you adjust, take on a new normal realise you aren't going to die tomorrow, and realise you can still enjoy life and make the most of every moment. And I do. I go out enjoy my friends and family and rest when I have to.
What advice would you give to someone newly diagnosed?
You will be in shock, you will panic this is a big thing. BUT gradually,truely, that scared panicked feeling begins to dissipate. Listen to your team and ask questions. Get to know your team, let them get to know you as a person. It all helps. The women on this group (Make 2nds Count) are always here for each other and help with information encouragement, and inspiration. A mine of wisdom and knowledge and so supportive. They have been a lifeline for me. If you have anxiety seek help, its natural don't just put up with it it can suck the joy out life and you need to enjoy every moment. If you get side effects talk to your team there's things they can help with again don't just put up with it. Take every opportunity to enjoy your family and friends and make memories.
Sarah
Sarah Larner
North Wales
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
12th June 2019
Current treatment line:
Kadcyla (TDM1) second line treatment, for last 11 months
How does secondary breast cancer affect your life?
Physically I am very well. But the stress of uncertainty is very difficult to manage. The thought of not being here for my daughter is beyond words. How can she grow up without her mummy.
What advice would you give to someone newly diagnosed?
Learn quickly to advocate for yourself. Surround yourself with people who lift you and are there for you, friends, family, medical and health care professionals.
Patricia
Patricia Snow
Evanton ,Ross Shire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
4th December 2017
Current treatment line:
Palbociclib, Fulvestrant, Denosumab
How does secondary breast cancer affect your life?
It’s an emotional roller coaster not knowing how long you might have , while also trying to live your best life . There are good days and bad days and days when you can’t get out of bed . Treatment causes fatigue, dizziness and mood swings .
Silly things can tip you over into sadness and fear .
The constant round of bloods , treatment, scans is nerve racking and also tedious, waiting, waiting.
SBC changes your life for ever , but I have met some amazing inspiring people, so there are positives,
What advice would you give to someone newly diagnosed?
Try to take each day at a time , step by step . Worrying, so hard not to do , can lead you to a downward spiral . Plan to have things to look forward to . A walk , meet up with friends . A trip away , a bit of self pampering. It all helps .
Talking to someone in a similar situation can be so helpful.
Remember that cancer does not define you , you are still you .
Marie
Marie Johnston
Scotland
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
1st May 2018
Current treatment line:
First line treatment
Target therapy and bone injection
How does secondary breast cancer affect your life?
It has slowed me down. I am not able to do the things I used to. Tiredness & Fatigue is an issue. Constantly worries of the future and how long this treatment will keep working. Will there be another treatment for me .Worrying about your family and how they are doing. Feeling guilty for having this disease .
What advice would you give to someone newly diagnosed?
Please try to accept help. Contact people who are the same, going through the same thing. Ask for advice on where you would get this.
Kate
Kate Enell
Liverpool
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
14th July 2021
Current treatment line:
Weekly paclitaxel
Three weekly phesgo
Four weekly Denosumab
How does secondary breast cancer affect your life?
Unable to work full time doing the job I love and struggle doing the school run or the day to day things I would normally do due to extremely fatigue.
What advice would you give to someone newly diagnosed?
Please do not google
Find people online who have been living with secondary breast cancer for many years as this gives you hope and also helpful to reach out to people who understand what your going through
Vanda
Vanda McKeeman
NORTHERN IRELAND
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
9th July 2012
Current treatment line:
On hormone treatment Letrozole, zoladex, ibandronic acid, adcal d3. CT scan every 3months.
How does secondary breast cancer affect your life?
I was stable until 2019, now in lymphnodes in my neck and they are triple negative. Had radio therapy 2020 but no other treatment just watch and wait. Horrible as it's the first thing in your head when you waken, scanxiety when you are waiting for results, haven't had face to face with oncologist since October 2020. Sometimes I can't always do things I would like to but I will have a good go at it. Makes you appreciate the wee things in life
What advice would you give to someone newly diagnosed?
Ask questions, IF you want to research go to trusted sites eg Macmillan, Cancer Research. IF you feel something isn't right with your body push it. Your team are there to help you in any way they can. Live your life as best you can
Annemarie
Annemarie Wilson
Doncaster
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
21st October 2021
Current treatment line:
I received my secondary breast cancer diagnosis after I received the biopsy results from a brain tumor that was taken out with a crainiotomy. The cut a long story short, after many tests and scans it was confirmed that the cancer had spread to multiple bones and pericardial sac. In November 2021, a month and a half after having brain surgery I started my first line treatment. I had docetaxal, phesgo (herceptin and pertusumad) and densoumab for my bones. In March 2022, after finishing chemo i was told that the tumor had reaccured in my brain, therefore I was treated with gamma knife and continued with just the phesgo amd densoumab injections. I have been stable since April 2022 and continue on first line treatment.
How does secondary breast cancer affect your life?
On a day to day basis SBC doesn't effect my life at all. I work part-time, I do feel well enough to work full time but having cancer made me slow down work wise. I go for treatment every weeks which is just a 5 minute injection and other than this i give it very little thought.
What advice would you give to someone newly diagnosed?
Don't Google stats. Join support groups like M2C, or connect with others going through the same on instagram. There are women out there in the online cancer community who I've never met in person but have such an impact on my life in a positive way. Do you own research, ask questions and advocate for yourself. Allow yourself to have them down days... and remember we rise as quickly as we fall.
Louisa
Louisa Spilman
South Yorkshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
17th June 2020
Current treatment line:
Phesgo
Letrezole
Denusomab
How does secondary breast cancer affect your life?
Apart from a 3 weekly trip to hospital for treatment minimal disruption.
Still work full time.
Live daily with pain from bone nets but have just learnt to live with it
What advice would you give to someone newly diagnosed?
DO NOT GOOGLE
Stats are so outdated.
Seek real life experience from us ladies living daily with it
Sandy
Sandy Smith
Doncaster
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
20th April 2021
Current treatment line:
I'm currently on my first line of treatment which consists of letrozol, palbociclib, denosumab and goserelin.
How does secondary breast cancer affect your life?
I was diagnosed very quickly after being sent to A&E by my GP for pain in my right side. It was very scary to start with, I didnt think I'd see my two boys (10 and 6) grow up or grow old with my husband. I've been on treatment for 6months now and feel much more positive - my last scan showed mets had shrunk by 2.5cm, so we are ecstatic and hope it continues.
So far things are going well and apart from my monthly appointments my everyday routine has not really changed. However, I do get tired and run down quite easily, I suffer with sores in my mouth when I'm really run down. I returned to work around 7 weeks after my diagnosis and once I'd adjusted to all the meds and have continued to work since, working in a school has helped as I get regular breaks due to school holidays.
I often find I forget that I have SBC as on a normal day I don't have any pain. I try to stay positive and not give it too much head space but then there are days where it hits you hard, usually when the pain h
What advice would you give to someone newly diagnosed?
Do NOT Google.!!
Try to find an outlet for your emotions, I previously used writing as my outlet and this time is no different, only this time I've put into a blog.
Fresh air is a great healer for body and mind.
Live your life and don't let SBC take over (difficult I know) and keep a positive outlook.
Kelly
Kelly Carson
Suffolk
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
5th April 2023
Current treatment line:
I am currently on my first treatment line. I have just finished 6 rounds of chemotherapy (Docetaxel) which I had every 3 weeks. I also started taking 3 weekly phesgo injections alongside this as I am Her2 positive and have just started denosumab injections every 12 weeks as I have mets in my sternum.
How does secondary breast cancer affect your life?
As you can see from my date of diagnosis I am quite early into my journey but I would say the biggest impact it has had on me so far is an emotional one. Before my diagnosis I didn’t even realise you could live with cancer. I am a very proud mummy to 5 beautiful children, my eldest being 14 and my youngest being 5 months old. The hardest part is the fear that I won’t be around for them, for all the milestones life has for them and to watch them grow. In a funny kind of way though this diagnosis is helping me to live more in the moment, it’s definitely taught me that tomorrow isn’t promised and to make every moment count. I am so grateful to be blessed with the life I lead and I intend on being around for many more years to enjoy every second of it.
I am lucky that I have an incredible support network, starting with my husband who is my best friend, my mum and family, my husbands family and my amazing friends. I can’t thank them enough for keeping me going in my darkest of times.
What advice would you give to someone newly diagnosed?
As I mentioned I am new to this so I’m not sure I would be best placed to advise someone but the advice I would give is to breathe. Feel the emotions and allow them to come, don’t bottle them up but also don’t let them consume you. Once you start to understand them allow the negative feelings to pass. I read a quote that says “fear doesn’t stop death, it stops life and worrying doesn’t take away tomorrows troubles, it takes away todays peace.” That really stuck with me! Also you don’t have to be positive all the time, be honest with your support network and access any support you may need. The make seconds count FB group has been a real comfort to me where you can chat to people who understand which helps you to not feel so isolated. Another thing I’ve learned is “we are living with cancer not dying from.”
Go enjoy life and make some memories, do all those things you’ve always wanted to and stop putting them off, not because of the illness, but because why not!
Lisa
Lisa Fleming
Edinburgh
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
29th May 2017
Current treatment line:
line 1.5. This may sound a little unusual but I have been on herceptin since day one as first line treatment. This was given alongside 18 rounds of paclitaxel and perjeta.
In 2018 when it progressed to my brain we swapped perjeta for capecitabine and I have remained on this protocol ever since.
At present I take capecitabine daily for two weeks on and one week off. Herceptin is given via IV every 3rd week and denosumab is given every 4th week.
How does secondary breast cancer affect your life?
Where do I start? Life since diagnosis has thrown everything up into the air and changed most aspects of my life.
The biggest challenge for me personally has been the physical impact that my diagnosis has had on me. In the last 4 years I have undergone 13 surgical procedures including 2 craniotomies (brain surgery). breast surgery. numerous spinal surgeries and a bilateral oophorectomy. From learning to walk again to weight gain and learning to live with the physical scars it's taken a lot out of me.
In the last year I have had the longest period of stability since my diagnosis which has allowed me to live as close to a 'normal' life as I will ever be able to. Long may it last!
Mentally I think it's almost impossible not to let this diagnosis affect you. Over the years I have had to try different 'coping techniques' to help me deal with the impact that it's had on my mental health.
Building relationships with other patients has been such a great support since I was diagnosed.
What advice would you give to someone newly diagnosed?
Take your time.
When you are diagnosed initially the amount of information that you receive can be extremely overwhelming and hard to comprehend. Every one deals with their diagnosis in their own way and there is not right or wrong. You have to do what's right for you.
Speaking to other patients who 'get it' can be extremely beneficial as you may find that your family and friends find it hard to know what to say or how to deal with your diagnosis. There are lots of great support networks out there both virtually and in person.
Social media can be a great way to connect with other patients however at times it can become all consuming. It's ok to take time out from online relationships. Be kind to yourself.
Of course Make 2nds Count is here to support you at any stage in your diagnosis.
Zach
Zach Brookes
Birmingham West Midlands
Secondary breast cancer has affected me as a:
Child
How does SBC affect you?
When my mom opened up to me about her cancer diagnosis on the 1st April 2021 my body and mindset went into shutdown; I struggled with processing the words of what my mom told me at that time because I'm autistic it was struggle to process in emotions of what's going on with my mom at that time but over time I've come to terms with my mom's cancer diagnosis we have open conversations it made my relationship with my mom much stronger than ever before and it made me grow up more as a person as the months go by.
Diane
Diane Mackie
Aberdeen
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
22nd July 2020
Current treatment line:
Palbociclib, Letrozole and Zoladex
How does secondary breast cancer affect your life?
I also have previous health conditions which effect my joints and fatigue and the treatment I'm now on aggrevates it even more leaving me in bad pain and constantly tired.
What advice would you give to someone newly diagnosed?
Live your life to the fullest and cherish every moment. Also seek support from Maggie's or a local cancer centre.
Jeannie
Jeannie Ambrose
Cambridgeshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
14th May 2019
Current treatment line:
First line - Ribociclib, letrozole, prostap, denosumab
How does secondary breast cancer affect your life?
This diagnosis is life changing and it’s been a steep learning curve on how to adjust and live well. It's a hard card to be dealt. The emotions are so strong and the sadness can be overwhelming. But I've also learnt that along with that goes an amazing appreciation for life, I think the love I have has just magnified or that's how it feels. I've found that I need to look after myself more, physically and mentally, I get tired easily so I rest when I need to and I try to keep myself as relaxed and positive as I can. Sometimes I feel down but I'm determined to just keep moving forward, keep living for as long as I can. I've been lucky that I can carry on working which has really helped, and after the initial devastation, friends and family just treat me like the old me. I mean I probably get nicer birthday gifts now so you know, every cloud and all that. It's hard to not imagine your life in the future, but sometimes I let myself dare and that's precious. Hope.
What advice would you give to someone newly diagnosed?
Mentally this is such a lot to carry. Seek out and do the things that make you happy, make you feel calmer and take it a day at a time. If you want to connect with other cancer patients, people who understand how it feels can be so comforting. Find your tribe and they will cheer you on every step of the way. Have faith in yourself, you are not a number, there will be dark days but there is still a wonderful life to be lived and you will find an inner strength you never knew you had.
Donna
Donna Hadjicostas
Surrey
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
21st January 2021
Current treatment line:
I’m currently on my first line treatment for secondary breast cancer in my liver and bones. I have recently finished chemotherapy (Abraxane) and will be having Phesgo injections every three weeks and letrozole tablets daily.
How does secondary breast cancer affect your life?
Before my secondary diagnosis my life was getting back to normal after my treatment for primary breast cancer in 2018. It hadn’t been mentioned previously that there was a high probability that the cancer would spread, so it was a huge shock to find this out only two years after finishing my primary treatment.
I was half way through training to be a primary school teacher which I have currently paused while having treatment. I feel as though the worst part is the uncertainty of how things will pan out, it can be draining mentally to just feel worried constantly, especially with two young children.
What advice would you give to someone newly diagnosed?
My advice would be not to google anything! It can be very scary reading out of date statistics and prognosis’. Take each day as it comes and do what you can to keep yourself feeling positive. I try and do something fun with my family or read a good book to take my mind off of cancer.
Reach out for support if you need it, there are lots of charities or support groups that you can talk to who know how you’re feeling. Also, don’t be afraid to ask questions and raise concerns over your treatment/symptoms!
Nicola
Nicola Williams
Warrington
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
7th May 2021
Current treatment line:
Spinal decompression Surgery, Radiotherapy, Zoladex, Letrozole, Palbociclib and Denosumab.
How does secondary breast cancer affect your life?
My story is still early days but........Life changing. An uncertain future. Future plans now reassessed. Daily life now includes: Pain, anxiety, fear, side effects, hospital appointments, scanxiety, but has also given me the drive to live and to do the best I can for myself, my family and my friends. It has connected me with a support network. Being a part of a community we would never think we would be in, but it has also connected me to some amazing people!
It has made me rethink what I want to achieve and has also not stopped me from wanting to help others. Once a helper always a helper....
What advice would you give to someone newly diagnosed?
Breathe!!! Take time to take everything in. Seek help if you need to for support, mentally and physically. Educate yourself about your condition and treatments. Live in the now. Be your own advocate. Listen to your body. You know it best.
Lyndsey
Lyndsey Nichol
Scottish Borders
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
29th August 2017
Current treatment line:
Currently on palbociclib, zoladex, fulvestrant and denosumab. But this is due to change on Friday due to progression in my liver.
How does secondary breast cancer affect your life?
I still manage to work full time at the moment as a nurse. It’s a case of living in 3 monthly blocks for me until the scan time comes around. I try not to let secondary breast cancer affect me but it does. I tend to keep myself busy and occupied and working helps as well.
What advice would you give to someone newly diagnosed?
Take it one day at a time. Make sure you have someone else with you for your appointments coz sometimes it can be hard to take in all the information. It has made me look at life in a completely different way and for the better.
Nuala
Nuala Kelly
Billericay, Essex
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
25th November 2020
Current treatment line:
I had 18 weekly rounds of paclitaxel. With 3 weekly immunotherapy of herceptin and pertuzumab. Bone injection of denosumab every 4 weeks.
The immunotherapy isn't working as we thought I have progression once, so I'm going to probably start Cape next week.
How does secondary breast cancer affect your life?
At the moment it's an everyday worry, as we are in need of finding a treatment that will work long term. I have been off work since Nov and find fatigue a big issue for me at present. I'm managing the pain from my liver and bones through tablets, which can make you feel like a pill box! My fiance and my two children are my support network along with family and friends.
What advice would you give to someone newly diagnosed?
Give yourself time to process the diagnosis look up the seven stages of grief, you will have high and lows like with anything in life. Social media Instagram look for your tribe, you will want to find people that look and sound like you, so you don't feel as alone. Makes2ndcount Facebook group is amazing. Ask questions of others they are so welcoming and happy to help.
Take the help when offered I'm bad at this! but sometimes you need to put you first. Much love nu xx
Claire
Claire Goodwin
Maidstone, Kent
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
13th January 2023
Current treatment line:
I am just about to start a chemo drug called Abraxane and immunotherapy. I'll go in for treatments on a four week cycle, with three on and one off.
How does secondary breast cancer affect your life?
So far, the physical impact of secondary breast cancer has been limited . It has however caused a lot of fear and anxiety, anger and hurt. Saying this, my husband and I are trying to live each day with a positivity and do the things we really want to do. I am still working at the moment for two reasons, one is the money for the mortgage but the second is that I love my job and it's a big part of who I am. The diagnosis has given me the nudge to do things I'd been putting off. We've got our wills sorted, I've put my all my pension pots together and even booked in that skydive that I have been debating in my mind for years.
What advice would you give to someone newly diagnosed?
Be kind to yourself and let yourself feel and be however you need to be.
I've had a bit of counselling and seen the absolute huge value of self care. It provides calm and gives a sense of control back. Make time for the things that bring you joy and a sense of calm.
I'd ask your team whether the hospital or local charities provide any holistic treatments, and would recommend talking to Macmillan about counselling sessions too. My counselling sessions have been really helpful.
I found telling people about my diagnosis hard. I told my husband and parents straight away but having these conversations is tough. I use Facebook to update friends and family. With close family and friends we might discuss it but largely I wanted to be treated as normal. I've found this works for me. I know others have used blogs in a similar way.
Laura
Laura Bailey
London
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
11th May 2018
Current treatment line:
Ibrance, exemestane, zoladex.
How does secondary breast cancer affect your life?
It makes everything I love doing harder.
It makes loving harder.
What advice would you give to someone newly diagnosed?
Cling on to hope.
Annemarie
Annemarie Wilson
South yorkshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
19th October 2021
Current treatment line:
Docetaxal chemo, herceptin and parjeta
How does secondary breast cancer affect your life?
I am currently in the middle of chemo for secondary breast cancer as well as still recovering from brain surgery I had in October to remove a brain tumor which was also a breast cancer spread. Currently my anxiety is my main problem as I have been told inconsistent information about where my cancer is, we have been told heart and lung lining as well as multiple areas of bones. But things and new areas change at each oncology appointment. I find that I am a control freak and even though the treatment I am on targets the whole body I find it frustrating that I still have no consistent information on where my cancer actually is.
What advice would you give to someone newly diagnosed?
Do not Google!! Join groups that have members going through the same things, I take great comfort in talking to people online but at the same time if anyone has progression or treatment lines fail try not to take it to heart that the same will happen to you because we are all different. Ask questions and don't be scared to challenge your team if your not 100% happy.
Tom
Tom Fletcher
Northumberland
Secondary breast cancer has affected me as a:
Partner
How does SBC affect you?
I’ve seen my partner go from independent physically active, to having illness, severely incapacitating & undiagnosed, in so much pain she couldn’t even turn her head. Then she collapsed & couldn’t move. I carried & drove her to hospital & was with her when told that she’d tumours in her spine & cord compression with features of advanced cancer.
Our lives changed. Susan had surgery but was in a wheelchair for a year. I stepped up as she’d done when I’d been ill. We joke that was practice & my challenge is to do better. My priority is supporting her. Staying emotionally strong & becoming chauffeur & hand to hold. Taking her where ever she wants. Watching her work hard on physio determined she would walk & drive again. I have no regard for our GP. He messed up & he’s not even spoken to her let alone been out to see her.
I suppress high & low emotions & do my best to stay on an even keel & in the here & now. I can’t think of anything for the future other than hopeful positive things
Cathy
Cathy Snape
Anglesey
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
25th February 2021
Current treatment line:
Palbociclib
Letrozole
How does secondary breast cancer affect your life?
Wow, were to begin - the rug being pulled out from you.
The plans you had, buying the house - not now
The constant positivity you have to show your family. Exhausting
Why me - waking up - going to bed - shit I’ve got Cancer. The fatigue and the sadness of knowing.
The rollercoaster ride that is SBC.
But also the hope and trying to do the things you have always wanted to.
What advice would you give to someone newly diagnosed?
Don’t google!!!
When you’re ready join FB groups like make 2nds count because it makes a huge difference in your mental health to talk to people who are going through the same.
Talk to Tenovus or Macmillan to help you through the minefield that is trying to get benefits that you are entitled to.
jennifer
jennifer pope
Bishops stortford
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
15th May 2019
Current treatment line:
After some progression from my bones to small areas in my liver I currently take Capecitabine on my third cycle and have a monthly injection of denosumab.
How does secondary breast cancer affect your life?
It has changed everything both negatively and positively. Before cancer I would never have experienced the opportunities that have presented themselves to me, I wouldn’t have co created the little c club and definitely had a different perspective on life. Having an incurable disease really makes you reflect on what is important, how to prioritise my time and ensure that I am really conscious of creating good memories with those that means the most to me.
What advice would you give to someone newly diagnosed?
Don’t google anything. Knowledge is powerful but poor information can lead you down a rabbit hole of disparity. Make sure you have a positive and trusting relationship with your oncologist where you can have honest conversations and make that you decide on plans and treatments together with you as the priority.
Shirley
Shirley Roche
Ayrshire, Scotland
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
24th November 2020
Current treatment line:
28 Paclitaxel sessions which have now stopped working.
Second line of treatment being considered to start next week.
How does secondary breast cancer affect your life?
MBC takes up a lot of head space which can over shadow everything else.
I like facts.
I like a plan.
I like to be in control & plan for my ‘off’ days which makes the good days happier & more fun.
So I try to reduce the head space it gets because I’m in control - not IT.
What advice would you give to someone newly diagnosed?
Breathe!
Gather all info, join support groups, talk to people who know what you are feeling. It helps massively!
Stay off Google!! Google hasn’t experienced what you are experiencing. It gives numbers & statistics which you may never fall into.
Remove all negativity from your life, including people who do not make you feel good.
Do something fun every day to make you feel good as well as having some thinking time for yourself.
Get out of bed & thrive on today and tomorrow will come & be another day to thrive.
It’s ok to say No to things or people.
We are ALL on this Earth for a one time only visit so make it the best trip of your life & laugh every day because laughter is a great medicine.
Gemma
Gemma Duff
Charlton
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
19th September 2019
Current treatment line:
I was diagnosed secondary from the start (de novo). My cancer is triple positive so initially treatment was docetaxol, herceptin and peruzamab. I completed chemotherapy in February 2020 and continue with a 3 weekly infusion of herceptin and pertuzamab for as long as it continues to work. I have also had a mastectomy and radiotherapy to my chest area.
In addition to my targeted therapy I have hormone treatment, Tamoxifen daily and a montly Prostrap injection. I also have a bone strengthener (my mets are in my bones) every 6 weeks.
I have scans every 3 months to check my drugs are still working.
How does secondary breast cancer affect your life?
It is easy for cancer to become all consuming. Every week there is a hospital or doctors appointment making it extremely difficult to forget!
My hormone treatments also put me in medical menopause meaning that I get hot flushes, brain fog, hormonal imbalances etc.
Despite this however, I have no symptoms of the cancer in my bones and I have very little side effects from my treatment. I get a bit tired some times but I'm extremely greateful that despite all of the treatment and appointments I can still do everything that I used to do before cancer. I have also made changes to my diet and lifestyle which means I feel fitter and healther than I have ever been. I play netball, do yoga, paddle boarding, cycling, running and I enjoy the outdoors with my family.
The mental impact of secondary breast cancer however, is by far the most challenging and I have to work on my mental health constantly to ensure I stay in the present and don't think too far ahead.
What advice would you give to someone newly diagnosed?
Do not google. You are not a statistic and no one can tell you how you will respond to the treatments available. Secondary breast cancer doesn't get the attention it needs and so statistics are out of date and offer no insight. There are so many different sub types and drugs and no persons story is the same as anyone else's. Find people in your position that offer hope but remember none of us are identical.
Most importantly, remember to keep living! Living in fear is not living at all. Even if we could tell the future would you want to stand still and wait for the inevitable or live a full and happy life, however long that might be.
Mandy
Mandy Smith
Pembrokeshire South West Wales
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
4th March 2021
Current treatment line:
Just completed 6 Docetaxel
3 weekly phesgo injections
3 monthly denosumab
Zoladex
Due to start letrozole
How does secondary breast cancer affect your life?
Sometimes it makes me feel that my life is all consumed by cancer, hospital appointments, treatments, side effects, conversations, shielding, medication, social media etc
It has made me a much more anxious person and paranoid of any aches and pains.
It often makes me sad and worried for those who love me.
But it has also made me appreciate things, it’s clarified what’s really important and taught me to value things and to live in the moment of each day and to make memories with all those who are important to you.
What advice would you give to someone newly diagnosed?
Be kind to yourself, it’s ok to fall apart, it’s ok to be scared, it’s ok to be angry. Take time to process your diagnosis. Reach out to those who can support you as you start your rollercoaster journey. Avoid ‘Google’ and dodgy online recommendations.
Join support groups/ pages etc
Keep a notebook for all the questions you will have to your team of professionals
Don’t be afraid to ask for help.
Do what feels right for you, be your own advocate.
Susan
Susan Beevers
Northumberland
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
1st August 2018
Current treatment line:
Palbociclib, Letrozole, Denosumab
How does secondary breast cancer affect your life?
Regrettably like so many my diagnose was poor and slow and after a long time going back and forth to doctors. Indeed I wasn't diagnosed until after I had 11 fractured vertabrae and spinal cord compression. That means I now have life changing mobility issues particularly when it comes to driving, walking and balance. This has meant a total change from what I used to love and enjoy doing such as travelling, cycling, horse riding, walking. All of which are no longer possible. A huge challenge for me to manage is the loss of being in control. I think I'll always struggle with the 'inconvenience' of having to keep going for treatment an absolute minimum of one day every 4 weeks and all that goes with it.
What advice would you give to someone newly diagnosed?
Keep calm even though you've just been hit by a sledgehammer. Make sure you understand as much as possible about your condition but NOT via google. Ask questions of the team who are responsible for your treatment and never leave an appointment wondering what they meant or not quite understanding something. Find a support group that suits you. Make 2nds Count is fantastic. Maggies Centres likewise and MacMillans too can offer support and practical help. Think about what you can do, not what you can't. Finally never be afraid to live and live the best life you possibly can.
Jane
Jane West
East Kilbride
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
29th October 2015
Current treatment line:
I'll get my 100th herceptin injection in July, I'm also on zometa. So far that's keeping everything contained. I imagine it's contained in a tupperware box, hermetically sealed by the herceptin. That probably makes me sound demented, but I don't care!
How does secondary breast cancer affect your life?
I was self employed until my diagnosis & had been for 26 years. I loved my work as a dog groomer but physically & mentally I couldn't continue. Personally, I've found my mental health has been battered by my diagnosis, I really try to stay positive, some days I'm more successful than others.
What advice would you give to someone newly diagnosed?
Get counselling & try to find others going through the same journey.
Lorna
Lorna Parkes
Crewe, Cheshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
27th November 2020
Current treatment line:
Currently on cycle 5 of GemCarbo. My first scan showed a positive respsonse after my first treatment line of chemo & immunotherapy stopped working.
How does secondary breast cancer affect your life?
I find the side effects sometimes difficult as I have 8 month old twins and a 4 year old son so some days seem impossible. It’s also hard psychologically as I worry about not being around to see them grow up and being forgotten about.
What advice would you give to someone newly diagnosed?
It’s ok to have bad days, but take each day as it comes and if you can find even a small positive out of each day it can start to feel better. It’s already ruining lives so don’t let it ruin it completely!
Angie
Angie Jones
Wrexham north wales
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
5th August 2021
Current treatment line:
Had spinal surgery because of fracture due to mets in spine, then radiotherapy on spine
Also have liver mets which am awaiting to hear which chemo or immunotherapy would be best suited
How does secondary breast cancer affect your life?
Early days for me at the moment, It consumes your thoughts, as I struggle with mobility I can’t do anything without help. I was diagnosed with TNBC in June 2020 and had lumpectomy, chemo and radio, no other scans!!! then had major red flags, pain and swelling in upper abdomen and mid back pain , mild at first but no one would listen until I lost feeling and severe pain to be hospitalised and told it’s spread in Aug 2021. I live with uncertainty, fear of the unknown, fear about treatment, whether it will help keep me alive, even though I am a positive person I still grieve for the life I had before Bc . When I pull up my big girl pants I do as much as I can , really appreciating spending time making precious memories with friends and family . Trying to still live my best life
What advice would you give to someone newly diagnosed?
Take a breath! Go through the emotions , talk about how you really feel.
Don’t google
Find online support groups with similar people , that really helps
Accept help when offered ( I know it’s hard)
Never give up hope
Enjoy the good days
Pamela
Pamela Clarke
Warwickshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
26th July 2019
Current treatment line:
Fourth line treatment of Piqray and Fulvestrant.
Targeted therapy for PIK3CA mutation
Monthly Denosumab
How does secondary breast cancer affect your life?
Immeasurably.
For good and bad. I hate that I have to think about not being here for my children and husband . I hate having to plan my funeral. I hate thinking every pain is progression. I hate living month to month.
However it has given me a freedom I didn’t have before. I don’t sweat the small stuff. I don’t say yes to things I don’t want to do. I love harder. I have found an inner strength and confidence.
What advice would you give to someone newly diagnosed?
Try not to Google, to be fair I think it is inevitable but definitely don’t believe everything you read.
Take notes or record your appointment.
Advocate for yourself
Don’t worry about ‘being a nuisance’ , it is your life.
Do things you love
Di
Di Rohan
Shropshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
26th May 2022
Current treatment line:
Abemaciclib 150mg twice a day
Denosumab injections monthly
Fulvestrant injections monthly
oxycodone for pain relief
How does secondary breast cancer affect your life?
I am a very strong & positive person & i try very hard to do as much as i did before diagnosis, The fatigue gets to me more than anything & some days i can sleep for 14 hours & others i don’t even have a nap. i have a 13yr old daughter & 3 horses so doing nothing is not an option. i’m very lucky to have a fabulous supportive husband who is happy to do weekly shopping, cooking & other chores. unfortunately he too is not in the best of health so we struggle between us to give our daughter as much as we can x
What advice would you give to someone newly diagnosed?
Stay strong, keep busy, talk to people. don’t read dr google but do join online forums for help & advice
Rachel
Rachel Stewart
Devon
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
9th February 2021
Current treatment line:
I completed 6 rounds of Docetaxel in June. Plus on Letrozole tablets, Phesgo injections every 3 weeks & Denosamab injection every 6 weeks.
How does secondary breast cancer affect your life?
I knew I was high risk of 1 of my 2 types of BC returning at 1ry dx. So already believed in living life to the full as long as I am fit and able. It still was a shock but not a suprise when DX with mets to my bones, liver & lungs this Feb. Fortunately my first scan has shown treatment is working so tend to push myself. Telling myself I need to make the most of this time, as we can only live scan to scan.
I do have aches & pains, anxious moments so practice being in the here & now. Focusing on my abilities & creative projects.
What advice would you give to someone newly diagnosed?
I found the support group of Make 2nds Count invaluable. Reading about positive stories helped. Me see that I can live a good life even though it is likely to be a shorter life.
I have focused on improving nutrition, practice mindfulness & breathing techniques to help relax and keep myself as resilient as I can be. Some times it is easier than others.
I do get hit emotionally when ladies in the group's pass away but remind myself that there are so many different types of BC, we all react differently to treatments and DX at different stages too.
Charlotte
Charlotte Batkin
Peterborough
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
17th July 2017
Current treatment line:
Primary bc diagnosed 1994, BRAC2 1998, 2nd Primary BC 2012, SBC 2017, various operations on spine and double mastectomy with diep flap, chemo, radiotherapy on breast, spine. Clinical trial at Addenbrookes 2020 -2021. Current treatment on rucaparib. Mets currently in spine, ribs, hip, lungs, sternum.
How does secondary breast cancer affect your life?
Had to give up my much loved teaching career in 2017, taking ill-health retirement. When mets are stable and treatment is going well my life is lived much as I want, however when cancer is progressing and painful, life is very difficult to manage. The uncertainty of never knowing if you are going to be able to do what you have planned, such as holiday, outing, family get together, babysit grandchildren, etc….I find very difficult. When my last treatment stopped working I had severe mental health issues with horrible panic attacks and anxiety. This stresses out the whole family and is definitely the worst about SBC.
What advice would you give to someone newly diagnosed?
Try not to panic. Listen to all that your ONC and specialist nurse advise. Write down questions and things to find out however trivial, if you can take someone with you to write notes. Use the support available slowly, try not to ring every helpline at once as you can end up with so much advice that it’s overwhelming. It can be useful to have a WhatsApp or similar friends/family group to use for posting your updates so that you don’t have to repeat everything to well meaning contacts loads of times a week. Don’t google things too much, use the well known cancer charities on line to look about info that you want I have found them very helpful and informative over the years.
Susan
Susan Grimshaw
Barnsley
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
22nd October 2018
Current treatment line:
Still on first line treatment, Letrozole and Palbociclib alongside Densaumab and Zoladex.
How does secondary breast cancer affect your life?
I was diagnosed De novo it came as such a shock as I was and still am feeling very well.
Make alot of life changes, retired early, taken up walking and definitely have more me time. Its been very tough but I'm living a good life and hope to do so for many years.
What advice would you give to someone newly diagnosed?
Definitely, definitely do not Google if you want any information ask your breast care nurse or oncologist. Be kind to yourself and don't expect too much from yourself too soon. It takes time to get your head around a diagnosis like this but you will live and laugh again!!!
Anne
Anne Brandvik
Suffolk
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
1st March 2017
Current treatment line:
Erubulin chemo
How does secondary breast cancer affect your life?
I takes over your life and can be all consuming going from treatment to treatment. I’m more tired and less mobile than I was before my diagnosis. I’m also fearful about the future and leaving loved ones.
What advice would you give to someone newly diagnosed?
Try to stay calm, seek support so you don’t feel alone and do your own research. Also get second opinions on everything regarding treatments if possible.
Laurie
Laurie Canning
Edinburgh
Secondary breast cancer has affected me as a:
Child
How does SBC affect you?
Having a parent who has been diagnosed with SBC affects many aspects of my life, I feel there’s a constant worry in the back of my mind about what may happen next. My mums treatment also really tires her out so we need to take it easier which is sometimes hard to remember.
Kirstin
Kirstin Spencer
Gloucestershire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
18th February 2022
Current treatment line:
Zoladex
Denosumab
Letrozole
Palbociclib
How does secondary breast cancer affect your life?
Anxiety and stress levels can be difficult to manage but I was also diagnosed with COVID two days after metastatic diagnosis which was quite a distraction.
I lost my job as a teacher when they found out - although I honestly wouldn’t have been able to do it with all the stuff I have going on. I could have fought it but don’t want to spend what time I have left pursuing that. Instead I’ve tried to find part time work to bridge the financial gap. It is a struggle and I find it harder to juggle all the stuff I need to do for my daughter - 8 years old so dependent on me for school runs, clubs, food etc. I do get tired. I look relatively normal - no-one really gets what is going on and expectations of me remain high.
I am trying to sort out my affairs and I think once I sort them out I may not be so worried. There is a lot to do still and I still find it difficult to accept I will be forced to abandon my daughter - I currently feel that I just don’t have the time to die.
What advice would you give to someone newly diagnosed?
Don’t bury your head in the sand. Try and make sure you get your cancer tested and get as full a histology as possible so as to individualise your treatment plan as far as possible. Each cancer has its own idiosyncrasies so try to get to know your own rather than fear it.
Advocate for yourself and get support to ask the right questions at the right time. As well as the bigger charities which are so wonderful such as Macmillan, as I have stage 4 Lobular breast cancer, I have found Maggie’s and specialised websites such as lobularbreastcancer.org.uk an enormous help. It is less scary being scared in company and comforting to find calm, kind and experienced support.
It’s a tough diagnosis - but you will live with it as well as possible.
Jo-Anne
Jo-Anne Hodkinson
Manchester
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
13th April 2021
Current treatment line:
Palbociclib denosumab zoladex apixaban letrozole
How does secondary breast cancer affect your life?
The cancer is in my bones and I had a proximal femoral endoprosthetic replacement (replacement of hip socket and femur) walking is difficult and the distance is limited. I still work full time as it provides my normality and a distraction from the cancer world of hospital appointments and scans. I no longer go out and party as the treatment makes me very tired so now much prefer to be tucked up in bed at 8.30. I try not to think about my future as it terrifies and overwhelms me.
What advice would you give to someone newly diagnosed?
It sounds like a cliche but just take one day at a time, just think about getting through today. It’s overwhelming and it’s okay to not be okay, reach out for help to friends and family or find a support group. Do NOT google prognosis statistics.
Kate
Kate Rackham
Manchester
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
17th April 2019
Current treatment line:
After primary diagnosis in November 2016, and after mastectomy, chemo and radio I started on Tamoxifen. At my secondary diagnosis I was changed to Palbociclib. This stopped working a year ago and I'm now on Capecitabine.
How does secondary breast cancer affect your life?
I try to keep things quite 'normal' for the sake of my children, which can be very difficult at times! I still work as a primary school teacher full time, but I have lots of support amongst family, friends and colleagues.. I can no longer run which I always loved to do, as I'm at high risk of bone fractures. I have numerous appointments at The Christie, which often impacts holidays or time away from Manchester. I manage to stay positive the majority of the time but I live in 3 monthly cycles around scans and results, constantly thinking about what life will be like for my husband and two girls when I'm not here anymore.
What advice would you give to someone newly diagnosed?
Live in the moment and don't think too far ahead.
Don't make any big changes when first diagnosed (even though you will feel like you want to!), things will settle down.
If you can, put the thoughts of scans in a box in your head and don't open it until scan results time.
To try not to let it define the person you are.
Put yourself and your family first.
Rebecca
Rebecca Bowler
Wantage, Oxfordshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
21st November 2014
Current treatment line:
Zoladex
Denosumab
Palbociclib
Faslodex
How does secondary breast cancer affect your life?
It affects everything I do, I live a very different life now.
Life has more fear and uncertainty than it should have but it also has joy , love and happiness as you learn to appreciate everything just a little bit more.
What advice would you give to someone newly diagnosed?
Breathe!
Advocate for yourself.
Be heard.
Laugh loudly.
Try not to let fear take over (I know that is easier said than done)
Always have wine in the house
Hug tighter
Emily
Emily Roberts
Shrewsbury
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
31st July 2020
Current treatment line:
Herceptin, perjeta, zoladex
How does secondary breast cancer affect your life?
I have learnt to adjust my life accordingly. I've had to make many changes.
What advice would you give to someone newly diagnosed?
Things go get easier.
Alice
Alice Flamson
North Cyprus and Somerset
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
28th September 2020
Current treatment line:
In 2016, I found a lump in my arm pit, my whole breast was cancerous and it had gone into the lymph nodes, so I had a mastectomy, chemo and radio. At this time they also did a CT scan and MRI on my back but the doctors decided it was not cancerous. From 2017 - 2019 I went to my GP and my breast care nurses a number of times complaining of back pain and memory problems, they prescribed paracetamol! In September 2020 (now living and teaching in TRNC) the pain in my back got so bad that I had an MRI and a PET CT scan and it was confirmed that I had secondary breast cancer in my spine, pelvis and ribs.
I now take letrozole every day and Ibrance for 21 days with a 7 day break. I have my bloods checked and have a monthly zometa bone strengthening drip in hospital and then start the Ibrance again. I have a gosrelin injection every three months to keep my ovaries from working and producing oestrogen because that is what drives my cancer. I also take tramadol for the pain.
How does secondary breast cancer affect your life?
I have two darling daughters, Maisie (10) and Heidi (8), they say 'Mummy this cancer is much better than before because last time you had no hair and they cut your booby off, this time you look fine!' I told them that this is actually worse because the doctors can not make me better this time but they can give me medicine to try to stop the cancer getting worse. Maisie said, 'but Mummy you can't die because I am going to need you when I am a teenager, actually, that is not long enough, I think I will need you when I am a grown up?!' So right now I am teaching A level and IGCSE Geography in a school in North Cyprus and having a lovely time with my amazing husband and girls. I walk up the mountains with my dogs but I don't run anymore because I worry about my bones breaking. Most days I am pretty positive but I get very tired and I am worried about the next phase of treatment and I am scared that I won't be there for my daughters. It feels as if the clock is ticking.
What advice would you give to someone newly diagnosed?
Ask for help, reach out to groups like Make 2nds Count and other SBC patients on Instagram, but don't spend too long online, there are some amazingly motivating stories but so many tragic stories, you have to remember that you are not a statistic and everyone has a different journey. Try not to get angry with people who tell you to be positive and say - you will beat this (and if you learn how to do this tell me, because it drives me insane!) Remember that they are in pain too and just want you to be ok because anything else is just too awful to comprehend. Find friends who are comfortable to get in the hole with you and cry with you, find others with whom you can just be silly, have fun and not talk about it. If you are able, keep working, it does at the very least distract and if like me you are a teacher you can gain strength from the love and care you give and get from your students. Spend time with your family and friends and as Brene Brown says 'Lean into joy'.
Fran
Fran Whitfield
London
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
23rd July 2020
Current treatment line:
I had brain surgery August 2020, chemotherapy October 2020-March 2021, cyberknife radiotherapy to my skull April 2021 and am now on Tamoxifen once a day, Zoladex once a month and Abemaciclib twice a day.
How does secondary breast cancer affect your life?
Getting told I had two years to live at the age of 25 I couldn't fathom what I was meant to do by the time I'm 27. Having to be on the drugs I am does make me feel like I have aged a lot and I do have daily struggles. My body doesn't heal like it used to so any cuts, scrapes, or things that normally would clear up quickly take me months which can cause a lot of pain but my life has also completely changed in very positive ways. I changed my career from a Personal Trainer to a Cancer Exercise and Rehabilitation Specialist, I appreciate my time so much more, I do things daily to make me smile and I avoid anything that doesn't bring me joy.
What advice would you give to someone newly diagnosed?
The biggest advice I give is take one small step at a time. Never think too far ahead and never think "what if". When I have scans coming up I don't think what the results could be or what happens if I just think what's the next step I need to take and that is go and lie down and get the scan and that's all I will think for the moment. No one knows what will happen, my experience with cancer has changed more times then I've had hot dinners so you just have to think what's my next step, focus on that and not ahead of it.
Mandy
Mandy Bradshaw
Northampton
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
20th August 2021
Current treatment line:
Letroxole and Palbociclib and then bone strengthening later
How does secondary breast cancer affect your life?
I have only just recently been diagnosed, but it took 6 months for it to be diagnosed after an MRI. To be honest, after feeling so unwell for a couple of years to finally get a diagnoses was a relief. I went through all the usual emotions and today I had a nose bleed which reminded me of the diagnoses and side effects. As I have only taken Letrozol for 6 weeks and Palbociclib for two weeks, not had too many problems. Work have given me a couple of weeks off to get used to the treatment which has done wonders for my mental health. I'm unable to walk far due to the pain in my leg and has been getting progressively worse which is frustrating as want to be fit.
What advice would you give to someone newly diagnosed?
I am newly diagnosed myself but I try not to let my mind wander off into the future too much, I have learned to take a day at a time. Never feel guilty of having a bad angry day, I think we need those every now and again. I do meditate which helps me a lot and 8 have learned looking at other people is to rest when you need to and try not to fight it. I struggled with this but now I sleep when I need to. Above you look after you
Georgina
Georgina Spry
Chester
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
15th September 2020
Current treatment line:
palbociclib
Denosumab
Letrozole
3 monthly scans
How does secondary breast cancer affect your life?
This is a huge question
My life is completely different now
I am anxious and scared all the time
My life feels like it revolves around my diagnosis and treatment.
I feel scared in my body as if I’m not safe
I question all that I have done between my primary and secondary diagnosis .
I want to rewind time and go to before it all began and know what I know now ! On the plus side I am fitter and eat better than I have done in years
I could go on …..,,
What advice would you give to someone newly diagnosed?
Don’t google !!!!
Join a community like Make 2nds count
Find online support through places like Penny Brohn
Claire
Claire O'Donnell
Glasgow
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
28th March 2016
Current treatment line:
I'm lucky to still be on first line treatment of Letrozole 5 years after diagnosis.
I've had an oophorectomy (ovary removal) and a mastectomy. Reconstruction was no longer an option after SBC diagnosis. Had I known that would be my outcome before my mastectomy I would have fought for a double mastectomy as I do struggle with being lopsided and would have preferred to be flat if no other option.
How does secondary breast cancer affect your life?
Fatigue is a constant.
Admitting that I can't do everything I once used to and that my brain function is not as sharp as it once was.
I'm lucky that with stable scans for 5 years, and my medication being tablet form that I am not too badly affected in terms of time at hospital.
Bone pain to back and neuropathy are the other main side effects.
What advice would you give to someone newly diagnosed?
Do not panic.
Avoid Google.
Find an online support group as soon as possible that can help you navigate.
Don't compare your story to someone else's as SBC varies in so many.
Trust your team.
Pamela
Pamela Canning
Edinburgh
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
4th July 2017
Current treatment line:
Letrezole and Palbodiclib
Other treatment to manage side effects
Sertraline
Edoxabane
Sodium Docusate
MST
How does secondary breast cancer affect your life?
Secondary Breast Cancer has become my life, I spend a lot of my time dealing with treatment, side effects , scans and other medical appointments.
I still do normal things with my family and friends but cancer is always at the back of my mind.
I am lucky to be a strong and positive person and have a fantastic family and friends who are always looking out for me. Life is still amazing and beautiful.
What advice would you give to someone newly diagnosed?
It’s ok to grieve for the life that you thought you would have. Being sad and angry is normal. Once you have a good treatment plan in place that your are happy with and the treatment is keeping you stable you will be able to plan things.
I’ve still managed to get on lots of holidays, including 3 weeks in Australia which when I was first diagnosed didn’t seem possible.
Join a support group, the groups run by Make 2nds Count have been invaluable giving us access to inspiring Individuals who help patients with SBC. I’ve been lucky enough to talk to oncologist, Maggies. Nutritionists and lots of other experts. I’ve been to Pilates and breathing courses and lots of other great things.
Best of all I’ve become friends with people going through similar things and we are able to share advice and support each other.
Lorraine
Lorraine Smith
United Kingdom
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
12th July 2019
Current treatment line:
My main medication is CBD oil with a little THC which ibpay for myself. NHS wise I am currently using Zoladex, Anastrazole and Palbociclib, but this isn't working so I will be changing to everolimus plus exemestane in the next eight weeks.
How does secondary breast cancer affect your life?
Life with SBC is far removed from life before. I have an eight year old daughter, and to learn that two years into an expected ten year treatment that it has failed has been very hard to take. I don't want to die. I look healthy. I feel healthy. I finally took care of myself and I watch every single thing I eat and drink, every toiletry item, everything. And people seem to think that I'm ok, because I LOOK ok. But I'm not. I'm absolutely terrified.
What advice would you give to someone newly diagnosed?
Talk about everything, the good AND the bad. Let it out. Be sad, it's allowed. Be angry, but let it out in a healthy way. It's a rubbish diagnosis, really shitty, but we have to fight to keep SBC in the spotlight. Fight for the best treatment and make sure you monitor everything you eat!
Charlotte
Charlotte Seeney
Sheffield
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
24th November 2020
Current treatment line:
Palbo
Denosumab
Faslodex
How does secondary breast cancer affect your life?
Physically through fatigue, low energy levels, bone pain, weight gain, heartburn, menopausal symptoms.
Mentally through fear, panic, anxiety, sadness, anger, dread.
Emotionally through a change in personal relationships, sense of self, lack of confidence at work. Lack of interest in sex. Constant 24/7 fear of leaving my children. Fear of future.
What advice would you give to someone newly diagnosed?
Don't Google.
Be kind to yourself. You've been hit by a truck and it takes time to take stock. Allow yourself to grieve for the life you thought you'd have. Find someone you can be completely honest with and share your darkest, ugliest thoughts. Get as much fresh air as you can. Look up at the sky and keep breathing. Trust in experienced women in your position who offer advice.
Chloe
Chloe Franklin
Manchester
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
3rd December 2020
Current treatment line:
First line. Zoladex, palbociclib and letrozole along with monthly denosumab injections.
How does secondary breast cancer affect your life?
I feel some form of pain most days because of the swelling in my liver, however yoga really helps me. I try not to let it change my life too much from how i went about life before. Obviously the biggest thing is the thought of not being here as long as I could, being diagnosed at 27 and knowing I probably won’t make it to my 40s is something that creeps into my daily thoughts but I try to push it aside and live my life to the fullest.
What advice would you give to someone newly diagnosed?
Take advantage and really soak in all the love you receive. I was blown away by the support I got from my family and friends and if I ever have a down day then I think back to the messages I’ve been sent or know I have so many people I can talk to.
Gillian
Gillian Stewart
Kirkcaldy,Fife
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
19th November 2020
Current treatment line:
Ribociclib, Denosumab & Letrozole
How does secondary breast cancer affect your life?
I hate living with a death sentence, I struggle to feel happy and cant now live the life I once had. Since diagnosed due to having bone mets and surgery, I can no longer run or weight train or race my mountain bike. I am only just back to work but can only manage part time. My marriage feels strained because I am not happy with myself. It has ruined my life
What advice would you give to someone newly diagnosed?
Dont use google and ask as many questions as possible, write them down for your oncologist team.
Helen
Helen Skelton
Brighton
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
9th September 2020
Current treatment line:
Letrozole, zoladex, denosumab, palbociclib
How does secondary breast cancer affect your life?
I’ve been lucky in that I’ve had few side effects and mostly feel well which allows me to live pretty normally, but also it’s changed everything. Hospital appointments, menopause, significantly reducing my workload (which I love), living with immense gratitude and pleasure in things but also learning to live with fear and grief that is always not too far in the background.
What advice would you give to someone newly diagnosed?
Be with people you love and who love you. Try ‘radical acceptance’ of what’s happening - denying it takes so much energy that you need and you can put into living life to the full, whatever that means for you. Find places you can be honest - sometimes you might be protective of your friends and loved ones, but there are amazing online communities who will understand. Saying that, also be careful what online rabbit holes you can fall into - too much can be frightening and destabilising. Learn to recognise when it’s not helping and give yourself a break! Love yourself, actively.
Fran
Fran Batty
Leeds
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
1st August 2021
Current treatment line:
I started on palbociclib, fluvestrant and denosumab. After 2 cycles of palbociclib it wasn’t working. I started on Paclitaxal chemo two days ago.
How does secondary breast cancer affect your life?
Every day now. It’s been a lot about managing my pain, fears and worries. It’s the 3rd time in 10 years I’ve had bc and now sbc. I also have the brca1 gene. I struggle with the diagnosis every day but I’m hoping this new chemo will start to work. I had to stop work and I'm doing things much slower at the moment. I have a husband and two children aged 13 and 17.
If this works then I have more time to spend with them all. I’m looking for some hope for 2022.
What advice would you give to someone newly diagnosed?
Take it one day at a time, definitely baby steps. Don’t Google , definitely do research and be in control of your own treatment. You are a person who needs to be treated with respect.
It’s very emotional and scary when you first find out and try to have acceptance that this is happening to you. Xxx
Vivienne
Vivienne Wilson
Edinburgh
Secondary breast cancer has affected me as a:
Nurse
How does SBC affect you?
I am the Patient Trial Advocate for Make 2nds Count and have been working with the charity for 7 months. I am also a Senior Research Nurse in Edinburgh and care for both men and women who are on a clinical trial.
In my role for the charity, my ultimate aim is to support patients who have a diagnosis of secondary breast cancer. To help them learn more about clinical trials and if appropriate help find a potentially suitable trial, specifically for them.
There are lots of misunderstandings around clinical trials and I am keen to dispel these myths. Lots of patients I speak to believe they are only appropriate when they have run out of treatment options and that isn’t the case. Trials could be available to them at lots of different time points. Patients sometimes think care could be compromised on a trial if they are on a trial with a placebo. Again that’s not correct, placebos are occasionally used but most often alongside other drug treatments and care would not be compromised.
Stroma
Stroma Phelan
Hampshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
3rd January 2019
Current treatment line:
I have only been on Tamoxifen since finishing EC chemotherapy and radiotherapy in 2019. Just this week I have found out that I have further progression in my spine so am being put on Denosamab, zoladex, letrazole and palbociclib.
How does secondary breast cancer affect your life?
I was diagnosed with bone mets De Novo in January 2019 and it felt like my world stopped. I was 39 and had already been to the doctors with a lump a few months before where I was told it was probably nothing, too young for breast cancer, probably hormones. We were devastated and I immediately though I would be leaving my kids behind with no mummy. The hardest thing was telling them I was poorly but they were also my strength alongside my husband. It took a long while to come to terms with it but I have tried to not let it get into my head and send me down a dark path. For the most part I live my life normally with the odd hospital visit and a little extra vigilance.
What advice would you give to someone newly diagnosed?
Do. Not. Google!!! No good comes with that as it is very outdated and generally only bad news! Take each day and each hospital appointment at a time and try not to stress about things you can’t change as you’ll end up not being “present” in the moment. Be kind to yourself and allow help from friends and family when they offer it and make sure you take time out for yourself…for me that’s the gym!
The biggest thing for me is a positive mindset, I can’t change what’s happening to me but I can change how I approach it and deal with it xx
Wendy
Wendy Chattaway
Norfolk
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
20th November 2020
Current treatment line:
Oral chemo palbociclib, Letrozole and monthly zometa infusions
How does secondary breast cancer affect your life?
Trying to have as normal life as possible but im aware its early stage. I get tired and aching feet and lower legs prevent me from walking as much as i want and need. Lesion on spine so my passion of scuba diving is sadly no more.
What advice would you give to someone newly diagnosed?
Try to be positive. Its all we can do. Our lives are on the hands of our oncologists
Danielle
Danielle Smyth
Uk
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
15th February 2020
Current treatment line:
First line treatment
How does secondary breast cancer affect your life?
I suffer terrible anxiety daily, I have a long list of side effects due to medically induced menopause.
What advice would you give to someone newly diagnosed?
Don’t google anything, use support sites with real woman on for support and advice.
Vicki
Vicki Keating
Birmingham
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
7th April 2021
Current treatment line:
Awaiting to start begonia trial, currently being monitored with scans luckily all stable at the moment
I will be receiving either str or an operation to remove the cancer in my lungs.
My cancer is triple negative and very aggressive usually so I am fortunate to have this period of none invasive treatment
How does secondary breast cancer affect your life?
I have had to give up work due to breathing symptoms and fatigue
I can’t be as active with my children as I used to, and that mentally hurts me
It has affected our family and our dynamic, constant hospital appointments meaning we can’t plan ahead, living our lives between scans it’s hard. It is also hard to accept I won’t be here to watch my kids grow into adults I think out of all of it that is the hardest for me
What advice would you give to someone newly diagnosed?
Take every day as it comes, hold on to the hope that the more time we are here the more chance we have of finding something that works, so we can live with cancer but not die from it
Sarah
Sarah Walton
Kirkella, near Hull
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
16th March 2020
Current treatment line:
Abemaciclib and Letrozole
How does secondary breast cancer affect your life?
I suppose its mostly a mental impact at the moment. The living in limbo... Wanting to take advantage of the here and now but having to try and keep things going for the future, however long that may be.
What advice would you give to someone newly diagnosed?
Try and stay as positive as possible. Its hard sometimes but a positive attitude does help. My partner and I (now my husband!) promised each other that we would let ourselves have lows but not dwell in them.
Natalie
Natalie Edwards-White
Warrington
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
12th November 2020
Current treatment line:
Palbociclib, Letrozole, Denosumab and Zoladex.
Had full left hip replacement and radiotherapy in nov 2020.
How does secondary breast cancer affect your life?
It’s the first thought in my mind in the morning and the last thing at night. My mind is busy!
I have some side effects but lucky for me I am very fortunate that I can still work and 80% of the time be me!
What advice would you give to someone newly diagnosed?
Do not Google! You are not a statistic! Stats are outdated and no two cancers and bodies are the same! Try not let cancer consume you! It is possible to thrive with this disease!
Rosie
Rosie Hawkins
Leeds
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
23rd May 2023
Current treatment line:
Current on 7th cycle of Nab paclitaxel and phesgo.
How does secondary breast cancer affect your life?
Was diagnosed with breast cancer the day before giving birth in May. It was confirmed 11 days later that it had already spread to the liver and had extensive liver mets.
Much to my surprise the treatment been ok and doable so far.
The hardest bit is the ridiculously rubbish odds I will even see my children through primary school.
What advice would you give to someone newly diagnosed?
Find your hope from the wider secondary breast cancer community.
No doctor has ever admitted we don’t know to me but that is the real answer. Medical terminology is stupid and words like palliative mean something different to doctors.
For no reason I can put my finger on it does get easier.
Lesley
Lesley Graney
Shoreham By Sea West Sussex
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
16th August 2018
Current treatment line:
Letrozole
Palbociclib
Denosumab
How does secondary breast cancer affect your life?
Secondary Breast Cancer affects every aspect of my life. From how I look, to how I think about myself and how I relate to the world.
I am lucky to be stable at the moment and tolerate my medication well. All the side affects are doable.
Presently cancer for me is more a mental challenge. The guilt, the worry the uncertainty, the impact on family and friends especially my children is a heavy load to cope with at times.
What advice would you give to someone newly diagnosed?
To tell them its not your fault
To tell them not look at statistics
To tell them reach out for help and support
To tell them you are not alone
x
Colin
Colin Leslie
Edinburgh
Secondary breast cancer has affected me as a:
Partner
How does SBC affect you?
In September 2014, I lost my beautiful fiancee Sharon to metastatic breast cancer.
Sharon was first diagnosed with breast cancer in early 2013, and after chemotherapy, radiotherapy and a lumpectomy, she was declared 'free' of the disease by the end of that year. We got engaged on Christmas Day and looked forward to getting on with the rest of our lives. We had no idea at that stage that secondary breast cancer was such a mortal threat to our future. Within three months, a highly aggressive strain of secondary breast cancer had Sharon in its grip. She died peacefully on 6 September surrounded by friends and family - we miss her and remember her every day. Her smile shines on from her home city of Swansea to her adopted city of Edinburgh.
Lizzi
Lizzi England
Northamptonshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
22nd July 2021
Current treatment line:
Palbociclib
Fulvestrant
Zoladex
How does secondary breast cancer affect your life?
I have only recently been diagnosed, but being honest... I'm not a fan! Just when I started to find a bit of normality I found myself back in the system. Despite being told I was 'too young' to ever be apart of this shit storm. However my worries and concerns were in fact confirmed as secondary breast cancer despite being dismissed, in pain and unclear of the what the future brings. However the one comforting thing is, I'm not alone, and thats what keeps me going and gives me hope.
What advice would you give to someone newly diagnosed?
Honestly speaking, I'm not at that stage yet. I'm not even sure what advice I would offer myself right now?!?
Emma
Emma Bennett
South Oxfordshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
6th October 2020
Current treatment line:
Ribociclib, letrozole, prostrap, denosomab
How does secondary breast cancer affect your life?
I try not to let it , I work part time , but it’s always at the back of my mind , I am in a lot of pain which is also a constant reminder, I get tired a lot to . I would love to find a face to face support group but still haven’t managed to find one in my area
What advice would you give to someone newly diagnosed?
Don’t Google , the statistics are out of date , use websites like breast cancer now and macmillan , use the online support groups , they can be very helpful so you don’t feel alone .
Sally
Sally Nyland
Derby
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
30th November 2020
Current treatment line:
After 9 months of chemotherapy tablets, which stopped working, I’m now waiting for a CT scan which will determine next line of treatment. It’s likely to be Erubulin, IV chemotherapy.
How does secondary breast cancer affect your life?
It is my life! It affects everything. I feel like my life is a ticking times bomb ready to go off, it I just don’t know when. Everything we planned for has changed. My husband and kids lives have forever been changed. There’s been lots of sadness and lots of tears but we still get up and keep going. We make the most of times together with family and friends, I don’t sweat the small stuff. I love harder, I care more, I try to make my life count
What advice would you give to someone newly diagnosed?
Dr Google is not your friend!! You might find some useful bits of info, but I would look for a charity or group that offers support for people with secondary breast cancer. They can provide advice, information and reassurance around what’s happening to you - Make2ndsCount is a good one to go to for sure.
Catch your breath if you can, go with the multitude of emotions you will be feeling. But ultimately, reach out for help and support. You don’t have to do it alone.
Nina
Nina Lowe
Edinburgh
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
18th December 2018
Current treatment line:
After many failed treatments lately, Kadcyla being the latest, I awaiting news about clinical trials and drugs not yet approved on the NHS.
How does secondary breast cancer affect your life?
I have had to give up work, and it has been hard on my two young children. But we try to remain positive, although that is getting harder as more and more drugs fail me.
What advice would you give to someone newly diagnosed?
Google is not your friend when it comes to statistics! Don’t pay attention, as we are the ones writing the new statistics, on the many new wonderful treatments now available and soon to be available!
Gemma
Gemma Ellis
Derbyshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
2nd February 2017
Current treatment line:
HER2CLIMB TRIAL - KADCYLA (TDM1) 3 WEEKLY 4 TABLETS A DAY OF TUCATANIB/PLACEBO
MONTHLY ZOLADEX INJECTIONS
6 WEEKLY DENOSUMAB INJECTIONS
SCANNED EVERY 6 -9 WEEKS
How does secondary breast cancer affect your life?
I am much more tired than I was which frustrates me as my head and heart are willing most of the time but my body is not.
It has changed my priorities a lot, playing games with my girls always comes before cleaning now, I want to spend as much time with my family as possible.
I am more emotional adverts and pictures can reduce me to tears when usually they would have probably gone over my head.
My confidence has been knocked which isn't just the cancer but also Covid I don't like going anywhere on my own which never worried me at all before my diagnosis in fact I enjoyed me time.
Because I have brain mets I can no longer drive at the time that broke my heart that I couldn't take my girls to school or pick them up.
Having to rely on people to get to the doctors, hospital, school, shops, pharmacy etc has been very hard to get used to and a element of guilt washes over me when I do ask people.
Independence was a big thing in my life but that has gone. My job was a great love of mine...g
What advice would you give to someone newly diagnosed?
I would say to take it a day at a time, not to Google things and frighten yourself as most statistics are out of date and alot of the information is incorrect, I don't think you can go wrong with joining support groups when you are ready to. Take everyday as it comes, accept help, don't put too much pressure on yourself and don't write yourself off yes secondary breast cancer is incurable but whilst there are lines of treatment ahead it's treatable and more treatments and research are on the horizon.
Joanne
Joanne Brookes
Birmingham West Midlands
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
1st April 2021
Current treatment line:
I am currently on chemotherapy treatment at the moment which is being very hard to explain because when I started the first cycle of chemotherapy I’ve been in hospital during the first cycle when I had my results back from the scan my body didn’t respond well so the doctors changed the type of medication to tablet form which I’m currently taking at the moment which recently had reaction to tablet form with the dose I am on at the moment.
How does secondary breast cancer affect your life?
It’s being very hard because of the side effects of the chemo it’s effects daily routine and relationships with my family especially my husband and four children they find it difficult to process information with what’s going on during the process especially my son who is autistic he finds it difficult coming to terms with what’s happening at the moment. Since I had the diagnosis its being difficult opening up my family about my worries and concerns.
What advice would you give to someone newly diagnosed?
Be prepared mentally and physically what’s coming because when I got diagnosed it took a while to come to terms with it, always communicate to your family members and partner with worries and concerns about the process. Start planning on making memories with the people who are close to you
Kate
Kate Berger
London
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
27th December 2020
Current treatment line:
Letrozole. Zoladex. Denosomab. Ribociclid. Cancer in bones and lung.
How does secondary breast cancer affect your life?
The idea of living with it forever is so hard to fathom. The idea that it can’t be removed. And that i now face a life living 3 month to 3 month scan. Praying that the treatment is holding it at bay. I’ve got two kids who i want to see grow up. I want to grow old. I love life. I love my job campaigning to end malaria. I want to do so much. I try to remember that no one knows what life will bring. How long they have. To as it as an invitation to live whole heartedly and without apology. To live in technicolour. I want to be someone who shows how you can live in harmony with cancer like a great old tree with burls.
What advice would you give to someone newly diagnosed?
Remember there are so many treatments in development. Remember stats are out of date and not relevant. We are all so different individuals. Remember cancer is just a part of us gone a bit crazy. That we can try to live in harmony with it. To be kind to yourself. To meditate. Breathe. Walk. Be kind.
Karen
Karen Green
Worcester
Secondary breast cancer has affected me as a:
Parent
How does SBC affect you?
We tragically lost our step-daughter Zoe to SBC on 27/05/2021, after a battle of almost 4 years: double mastectomy, infection, sepsis, & Covid 19. She fought them all. Aged just 40, she leaves behind a 14-year old daughter and a 4-year old son. We are heartbroken.
Heather
Heather Sutherland
Newcastle
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
28th November 2020
Current treatment line:
I’m currently on my third line of treatment since diagnosis and lucky enough to be receiving Trodlevy which was agreed on compassionate grounds thanks to my nhs team. It might have taken a little while to get here but to be on a treatment that works makes you feel much more confident that there is hope for longevity.
How does secondary breast cancer affect your life?
I try to lead a normal life as possible, some days that’s easier than others, I’m very independent but I’ve got better at accepting that there are times when I do need to rest, I refuse to let this diagnosis take everything away so I still enjoy nights out, trips away, lovely wanders. Spending time with people I love has much more meaning to me now.
What advice would you give to someone newly diagnosed?
Get a diary! There are going to be a lot of appointments, scans, tests, I even needed reminders to take medications - chemo brain is real so it helps to be organised! This is your diagnosis, get support where you feel comfortable doing so, social media,
charities etc but always speak/question your medical team where you have real concerns or worries and try not to get stuck in an internet rabbit hole looking at survival rates, try to focus on living with cancer
Diane
Diane Wildbur
Midlands, UK
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
11th February 2020
Current treatment line:
Palbociclib, Letrozole, Denosumab. I am currently also participating in two studies. The first is hosted by Cancer Care Oncology, and entails taking four additional 'off-label' drugs known for their anti-cancer properties, and which supplement my standard care. These are: Avorastatin, Metformin, Mebendazole and Doxycycline. The second is an exercise-based trial, which is NHS & Macmillan endorsed (https://safefit.nhs.uk/), and focuses on the role of exercise as an integral component of cancer treatment. To be honest, the latter trial is the best thing I've done since diagnosis, so I would whole-heartily encourage fellow-patients to check it out
How does secondary breast cancer affect your life?
Oh my goodness ... where to start! My metastatic disease was confirmed after a 25-years disease-free period!! It is currently residing 'only' in my spine, primarily in the thoracic and lumbar areas. Prior to my diagnosis in Feb 2020, I was training for my 4th marathon. I was admitted to hospital following breathing difficulties, which turned out to be multiple PEs, likely caused by the cancer in my spine. Up until that point, I had no spinal issues. I am advised not to run nowadays due to impact and the possibility of fracture. However, I still walk approx. 5k every day with my beautiful spaniel (Megan), cycle when I can (my wonderful family bought me an e-bike for Christmas, and do resistance/strength exercises as often as I can. For the time being, my cancer has to live with me, rather than me with it.
What advice would you give to someone newly diagnosed?
1. There is no 'battle' to be fought here, so ignore the media-hype that suggests there is. We all deal with this disease in different ways.
2. Be authentic (true to yourself). If you're angry, let that out; if you're feeling good, then shine.
3. Ignore any statistics you come across on 'Google' - These are mainly out of date, and are 'group' rather than 'individually' based.
4. Look at additional therapies that may complement your standard of care and discuss these with your care team.
5. Live the life that you want to for as long as you can, and as well as you can.
Jackie
Jackie Talbot
Wirral
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
4th September 2019
Current treatment line:
Palbociclib, Denosumab, Letrozole, Adcal D3
How does secondary breast cancer affect your life?
My treatment has left me physically disabled after surgery to remove very large metastatic deposit from right femur. The lasting disability has the most impact on my life, and how I view myself. The drug treatments are manageable, especially as you get more used to how the treatment cycle works with your own body, and as you take strength and advice from others in a similar situation. There’s always someone who has had the same side effect and has a great idea as to how to make it more tolerable.
What advice would you give to someone newly diagnosed?
The most important thing is to find your tribe. Find a safe place, with people who can understand and empathise with the situation. It must be a place of science and logic - Dr Google is not the right person for you! Learn as much as you can, knowledge will help you to ask the right questions when it is right for you. There is so much positive to be said about sensitive, sensible and honest support; without which this would be a very difficult place to be.
Nikki
Nikki Murray
Wirral
Secondary breast cancer has affected me as a:
Parent
How does SBC affect you?
My daughter Gemma has just passed away, after her breast cancer spread to her brain. She was having headaches and tiredness. We thought it was down to her chemotherapy. We had no idea what to look for. We have set up a just giving page to your charity and I would like to tell her story.
Suzan
Suzan Gilham
Dundee
Secondary breast cancer has affected me as a:
Child
How does SBC affect you?
My mum had breast cancer in 2007, she had surgery and was given the all clear. In Aug 2020, she became very swollen in her tummy and thought it was her diet. In November she started to feel worse, and started to look unwell In December she was coughing all the time to the point it made her sick, finally she attended the doctor and was sent for tests and on the 19th December she got a cat scan. We got the results on Christmas Eve and were told she had cancer in her liver and bones, but they could treat it. Never once was secondary breast cancer mentioned, we were sent home, my mum became more ill, we called the doctor out and she reassured my mum that it wasn't bad she had seen the scans. My mum by this point had stopped eating and was sent to hospital where they told us her valve from her liver to heart was blocked, 5 days no scans done and then I was told, she had innumerable tumours and we were looking at weeks. She died 2 days later. Its hard to keep her story brief.
Rebecca
Rebecca Moses
London
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
1st June 2022
Current treatment line:
Ribociclib + Letrozole + Zoladex + Denosumab
How does secondary breast cancer affect your life?
Where do you begin with this? I mean it feels like life has been turned on its head. But I have 3 children and the priority is to keep life as normal as possible for them. I have cut my work hours and far too often I need to go to bed at 7.30 but the priority is staying strong and healthy to be able to see my kids grow up.
What advice would you give to someone newly diagnosed?
Everyone tells you to live life to the fullest, and while it's tempting to go off and travel the world, it didn't take me long to realise the priority is that what I want in the future is to have three happy and healthy children. And really the best way to do that is by them experiencing as normal a life as possible so I have to find a way to do that. For the kids, I try to let the cancer take a back seat to everything. They'll see me take pills and go to bed early, but they also see me going out for the day and having fun with them. They don't see that I spent the previous day lying on the sofa to make sure I was well rested and ready to do that. And that's how it balances out.
Rosaline
Rosaline Cable
Balsall Common, Solihull
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
24th July 2021
Current treatment line:
Letrozole and Palbociclib
How does secondary breast cancer affect your life?
Slows me down, tiredness, can’t keep up with the rest of my friends and family, stress on my relatives and stops travel without really planning
What advice would you give to someone newly diagnosed?
Never Google, trust your team and talk to your family and friends so they understand how to help you
Katie
Katie Bratley
East Sussex
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
14th September 2022
Current treatment line:
Paclitaxel and Phesgo
How does secondary breast cancer affect your life?
I am still very early on so I’m still getting use to it all.
I have weekly chemo and Phesgo every 3 weeks
What advice would you give to someone newly diagnosed?
Take it a day at a time…I have good days and bad days but I am learning that SBC may not be curable but it IS treatable and new treatments are coming out all the time so stay strong!
Rose
Rose Shepherd
Jersey
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
29th December 2017
Current treatment line:
Abemaciclib and fulvestrant
How does secondary breast cancer affect your life?
I get so very fatigued and find I miss out on so much of “life”.
Letting friends/family down at the last minute is something I struggle with a lot.
I wish I could make so many more memories with my boys.
What advice would you give to someone newly diagnosed?
Take one day at a time.
Listen to your body.
Rest when you need to.
Question everything.
Amy
Amy Parkins
Norwich
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
20th April 2021
Current treatment line:
Phesgo, zometa, zoladex, tamoxifen
How does secondary breast cancer affect your life?
Knowing I have secondary cancer has impacted me and my family massively, I am 34 with a young child and my, well our, future has essentially been stolen from under our feet. I do try to keep positive and live life to the fullest though, the diagnosis has certainly made me change my thought process on life and opportunities…in fact I recently did a skydive which I had been putting off for years! I am currently fitter than I have been in a long time, and I hope that will put me in a good place to be around for some time to come.
What advice would you give to someone newly diagnosed?
It is hard, cry all the tears, shout out all the anger, throw stuff if you have to. But pick yourself up on your good days and make the most of life. Time is a great healer and things do get easier. I have definitely found that changing my thinking to “living with cancer” rather than “dying from cancer” has been a huge help too.
Sue
Sue Thomas
South Wales
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
21st April 2021
Current treatment line:
My secondary breast cancer is inoperable at the moment, as tumour has locally advanced to the chest wall.
Currently on Letrozole and Palbociclib with treatment response being monitored by regular blood tests and CT scans.
How does secondary breast cancer affect your life?
It’s been a tough 6 months as my diagnosis was completely out of the blue.
Some days, we still can’t quite believe this is happening to us, but the positivity and support from our closest family and friends is overwhelming.
The fatigue and sometimes side effects of treatment are hard to deal with, but we are determined to channel our energies into something positive and plan to fundraise in the near future to help promote awareness of MBC
What advice would you give to someone newly diagnosed?
During the first few months I struggled to listen to my body, but I have now learnt ( most days) to rest when I need to and recharge
So my advice - Be kind to yourself
Emma
Emma Young
Hertfordshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
2nd May 2014
Current treatment line:
Have been stable since my first chemo in 2014.
How does secondary breast cancer affect your life?
I feel like an old lady - fatigued, achey, I don’t sleep very well, I get hot flushes, I put on weight.
I’m scanned every 6 months.
I try to live as oblivious as I can to the fact I’m living with cancer. But sometimes, it’s hard to keep it in its box.
What advice would you give to someone newly diagnosed?
Take each day as it comes. Ride the waves of emotion. Listen to your body. Learn to pace yourself and familiarise yourself with the spoon theory. Oh, and dont Google!!
Chantelle
Chantelle Van Der Merwr
London
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
7th February 2020
Current treatment line:
finished 18weeks of taxol on 20/08 about to start PARP’s
How does secondary breast cancer affect your life?
My world was turned upside down over night but it is now the right side up. I look at photos before my diagnosis and I am a stranger to myself. I know her, I recognise her but I can’t remember being there. In some ways I feel like a shadow of the person I use to be, but that’s okay, because I’m not suppose to stay who I was, I am evolving into a different person. Every single part on my life has changed and for a long time I felt like a foreigner in my own life, the change happened too quickly. I haven’t had a moment to stop and catch up. But every day, I am slowing becoming the change this condition requires you to be. More appreciative, sensible, loving, kind and quite in my soul.
What advice would you give to someone newly diagnosed?
It’s okay to feel whatever you need to feel. If you feel sad then cry, if you feel sick then be unapologetic to do what you need to do to look after yourself. But there will also be days that you are going to feel healthy, it’s going to feel weird to feel okay and healthy, you are going to want to find faults, I mean you have cancer after all. Don’t do that. Don’t waste the healthy moments because your brain keeps reminding you that you are sick. If you feel good, then feel it with all your might, embrace it.
Debbie
Debbie Donnison
Worcester
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
17th February 2023
Current treatment line:
I have occult SBC, no evidence in breast which delayed dx. Liver/bone mets. On Letrozole, Abemaciclib, Zoladex & starting Xgeva.
How does secondary breast cancer affect your life?
Affected my physical confidence. Scared I’ll break (& die) but want to get back to horse riding & cycling. Rollercoaster of being happy & then remembering. Mostly good days but emotions close to the surface. Working full time & wish I didn’t have to sometimes (no sick pay until worked there a year). Like having a shotgun to my head. Still can’t understand how I got here.
What advice would you give to someone newly diagnosed?
Know that once you have a treatment plan it will help. Be knowledgeable but only read stuff on the internet if it is less than 3 years old. Ask questions. Understand. This is the time to be selfish about your needs. Do what makes you happy but also allow yourself to be sad. Keep active. I combine my morning walk with headphones, singing & a good cry. Sets me straight for the day. I can get through the whole of Helen Reddy I am Woman without crying now #lifegoals.
Grace
Grace Bellerby
Burley in Wharfedale
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
12th April 2012
Current treatment line:
I am currently on weekly paclitaxel which I started about 6 months ago, hoping it continues to keep my tumours stable.
I’m also on denosumab for my bones every 4 weeks
How does secondary breast cancer affect your life?
I have had multiple tumours in my liver for the last 3 years and get very tired from the cancer and from the chemo. I have had to learn how to pace myself which I have found difficult as I was very active before. I do still try and push myself though!
What advice would you give to someone newly diagnosed?
Take each day as it comes and take some time to get your head around everything. It takes a bit of time to adjust as there’s a lot to take in at first. It can be very daunting. Don’t google too much and get caught up with statistics as we are all individual. Look after yourself the best you can and make the most of the days when you are feeling good. Rest when you need to and don’t feel guilty for doing so
Kimberly
Kimberly Noble
Chester
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
5th February 2020
Current treatment line:
I am currently stable so not on treatment at this time
How does secondary breast cancer affect your life?
Each day is a worry wondering if every pain you feel is the cancer returning, we do try to stay positive as a family but its constantly on my mind... I worry for my boy who's only 6 yrs of age and how he would cope without me, I just wish that all cancers could be treated and we could go on to live the rest of our lives without the constant worry
What advice would you give to someone newly diagnosed?
Honestly I wouldn't know just to stay, just stay positive as they can & fight this s*** disease x
Lucy
Lucy Garner
Worcester
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
1st March 2018
Current treatment line:
I have had several chemos, currently on my 5th chemo called Paclitaxel. It’s been a rough ride but I have been asymptotic with regards to the cancer and it has only just started to cause me problems.
How does secondary breast cancer affect your life?
It never leaves me, I’m so angry. Sad that it affects my family and friends. I hate that I can never escape it. However I do try to stay positive as believe that helps keep me mentally strong, and I need to be for my 7 yo daughter and husband.
I’ll keep listening and reading and hope I can keep going for as long as possible.
Some days are mentally hard to stay positive and those days I am kind to myself, and try and pick myself up again. It’s unfair and I’m devastated. My daughter is my world and I hate that this disease is taking away her Mother so young and leaving my husband a widow.
What advice would you give to someone newly diagnosed?
Take one day at a time. Find out all the information you can. Initially it’s devastating and such a huge shock and hard to absorb, but wait for a plan and see how you respond to chemos, some people have years on the same chemo. It’s a rollercoaster of emotions. Some days you’ll find strength and other days you might not want to get out of bed. A strong mental attitude helped me, but having a young daughter meant i couldn’t give up.
Pauline
Pauline Reilly
Wiltshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
24th October 2020
Current treatment line:
Had 6 sessions of docatexel chemo and intravenous of phesgo drugs ended in May , now on phesgo injection every 3 weeks and demenusab bone strengthener every 6 weeks
This will continue as long as working
How does secondary breast cancer affect your life?
Trying to stay positive, because of delay in starting treatment due to COVID lockdowns etc so not properly diagnosed - thought it was arthritis- and was sent for a consultation re hip replacement- fortunately the surgeon picked up that cancer had spread to my bones after a 13 year gap.
My vertebrae has collapsed so unable to stand up straight, so this causes pain when standing or walking far
What advice would you give to someone newly diagnosed?
Stay positive, use trusted websites ie Macmillan for support
Try not to google symptoms
Talk to others
Jon
Jon Lock
Kent
Secondary breast cancer has affected me as a:
Partner
How does SBC affect you?
My wife was diagnosed with SBC in June 2018 and has numerous treatments but sadly died in March 2021. I am happy to share our story but also understand you may wish to use a more positive outcome. Rachel was 47 when diagnosed and only 50 when she died. We had been together 30 years and married for 28.
Laura
Laura Hemingway
Thirsk, North Yorkshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
4th August 2022
Current treatment line:
Ribociclib, Letrozole and Denusomab.
I started my treatment journey on weekly chemo called paclitaxel which worked really well to reduce and get the cancer under control.
How does secondary breast cancer affect your life?
My treatment is causing me to have quite bad joint pain, so I make sure I keep moving and exercise.
I keep busy to avoid any anxiety.
This sort of diagnosis definitely makes you reevaluate life… I don’t get annoyed by the small things anymore and have decided to do less hours at work.
What advice would you give to someone newly diagnosed?
At first it really does feel like your life is over! But that’s because the info out there is so out of date, it’s all doom and gloom. But 10 months on things have settled and I’m getting on with life. Try to find other, positive people going through the same, it really helps! Facebook groups etc. Don’t Google!
Karen
Karen Sellors
Derbyshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
24th September 2021
Current treatment line:
Docetaxil with phesgo
How does secondary breast cancer affect your life?
After being clear for 18 years this was a huge shock, and I locked myself away for the first few weeks, but it’s getting much easier now my treatment had began. Mine had spread to my liver and changed receptors too. I for now have had to stop work as I am a hairdresser with my own salon so the risk of infection is high.
What advice would you give to someone newly diagnosed?
Be kind to yourself within the first few weeks I was planning my funeral songs. But once my treatment plan was sorted I felt much better. You will smile and laugh again and sometimes even box it off it was my sons 21st last week a family meal I never thought about it once. Be happy with your team and remember this is about you. But I want to give you hope that it does get better and you will smile again.
Katharine
Katharine Tremain
Kent
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
7th November 2016
Current treatment line:
Denosumab
Anastrozole
How does secondary breast cancer affect your life?
I was diagnosed with breast cancer and then a couple of weeks later after every scan possible was told I had secondary breast cancer in my bones. Had chemotherapy, radiotherapy and mastectomy. Three monthly scans have progressed to every six months which does make it easier. Denosumab injections are now every 12 weeks instead of every 4. After 6 months on zolodex I had a hysterectomy in July due to tamoxifen causing issues and am now on anastrozole.
What advice would you give to someone newly diagnosed?
Don’t google! Take each day as it comes, it does get easier to live with but constantly on cycles between scans and results.
laura
laura killen
Northern Ireland
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
15th November 2018
Current treatment line:
I take Pablociclib 3 weeks out of every 5, I get a Zolodex and denausinab injection every 4 weeks, I also take Letrozole daily. This is my first line of treatment since my secondary diagnosis and over time the side effects have built up, but my cancer is stable. I have to take strong slow release pain relief twice daily. I have bone mets in my spine and pelvis. I get 3 monthly CT scans.
How does secondary breast cancer affect your life?
My cancer affects every aspect of my life, I get back pain and joint pain which are caused by cancer but also the meds. I struggle with extreme fatigue, especially on the weeks Im not on my treatment as my white blood cells drop so low and can take a while to rise again. By far the hardest part of having secondary cancer is the affect it has on me mentally. I have four children and the thoughts of leaving them is just unbearable. The thoughts of missing special times in there lives. The thoughts of them being upset, I just cant stand it. Also the affect is has on those around me who love me like my husband and mum and dad and seeing them suffer is just so hard.
What advice would you give to someone newly diagnosed?
Take one day at a time, I know it seems obvious but its so hard not to let your mind run away with you, and in the early days it was even harder. Find someone you can express your fears to, you soon find out who can cope and who finds it harder (and thats fine as it can be a hard subject) but sometimes you just have to let it out. If possible a counsellor is helpful.
Karen
Karen Dorey-Rees
Maidstone, Kent
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
20th June 2022
Current treatment line:
I am on first line treatment and being treated with ribociclib and letrozole
Ribociclib is a targeted therapy that blocks the abnormal protein that makes cancer grow
Letrozole is a hormone therapy that reduces the oestrogen in my body as high oestrogen is also feeding the cancer.
I am also receiving specialist counselling to help me accept, adapt and adjust my life living with cancer.
How does secondary breast cancer affect your life?
Physically the medication makes me feel tired and at times nauseous. I am therefore unable to do some of the things I previously did with ease.
Emotionally it has been extremely difficult. When I heard the cancer had spread to my liver I was devastated. The impact on my family has also been very tough and I often relive the moment I told my daughter and my parents and their unbelievable distress . The uncertainty as to life expectancy and impact quality of life can be all consuming. The knowledge that there is no remission and treatment will just be adapted as I worsen is hard to accept.
What advice would you give to someone newly diagnosed?
Be kind to yourself. Take all the support available and be assured that once you start your treatment plan you will feel more in control and things do get easier.
Also read as much as suits you (I read a lot) but focus on reputable sites like macmillan and cancer research uk this can help you stand up for yourself. Specialist clinicians will help you manage symptoms and distress.
Lastly don’t be ashamed to seek counselling support. Coming to terms with the diagnosis is so hard and there is support out there.
Vanessa
Vanessa De lukowicz
Oxfordshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
14th October 2020
Current treatment line:
My current treatment is palbociclib, denusomab, letrozole and prostap.
How does secondary breast cancer affect your life?
I was diagnosed de novo in October 2020, so straight to stage 4. I had no symptoms and had gone to see my gp for something else. The diagnosis rocked my world. I have 2 children aged 12 and 15 and I thought that my life was over, that I would not survive the year.
A year later my treatment is going well and I am feeling well. I have had to leave my job as a special needs teaching assistant and take early retirement, which was devastating as I loved my job so much. But I have learnt to put myself and my family first and live one day at a time.
What advice would you give to someone newly diagnosed?
It’s a shock, so allow yourself time to grieve, to get used to the bombshell you’ve been given.
Once you get a treatment plan in place it does get easier, you feel more in control.
I was offered counselling through the hospital and Macmillan, and it was the best thing I’ve done. It helped me to come to terms with what’s happening, and space to talk about whatever I wanted to.
Whatever you do, don’t Google!!!!
Live one day at a time, if you have a bad day it will pass and you can start the next day fresh.
I found online forums opened up a great support system for me.
Kerry
Kerry Robertson
Keith
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
24th September 2020
Current treatment line:
I was diagnosed de novo with HER2+ SBC with liver mets. Currently still on 1st line treatment. I had 6 rounds of Docetaxel , tratuzamab & pertuzamab which started 8 October 2021. Still receive tratuzamab & petruzamab every 3 wks as I am HER2+
How does secondary breast cancer affect your life?
I try and be as positive as I can be. Some days are good and you “forget” what is happening and other days are bad , aches n pains and a mental struggle. For the past year now my life has been living from scan to scan. My love of needles has not grown but it’s a small price to pay for the drugs that keep me here. I find I speak my mind a lot more now.
What advice would you give to someone newly diagnosed?
Don’t google! Think everyone would say the same although I think we have all done it. Remember it’s OK to not be OK. Ask / accept help when needed. Do some yoga / meditation / reiki, these are all good for the mind. They’ve all helped my mind to stop racing and reduce the anxiety towards scans. Don’t be scared of the scans, there’re there to help us.
Karen
Karen Watson
Midhurst, West Sussex
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
8th April 2022
Current treatment line:
I am on my first line of treatment taking Letrozole and Palbociclib and about to start cycle 10.
How does secondary breast cancer affect your life?
I was diagnosed De Novo following nerve pain and a fall which had fractured my spine and left me with spinal cord compression. Initially I was in wheelchair and couldn’t feel my feet to stand or walk but this improved with radiotherapy treatment and I can now stand and walk short distances with a frame thanks to my physio.
What advice would you give to someone newly diagnosed?
There are treatments available so try to stay positive.
The outlook looked very bleak for me on paper but my spine and liver mets are now not visible and I’m standing and walking again.
Eat well, be curious about your treatment so that you understand it, get out into nature, and try to find the positives each day.
Donna
Donna Callender
Llanelli WALES
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
2nd November 2018
Current treatment line:
At the moment I'm only currently taking exemestane while I await results for a follow up mri I received on 23rd September, after they found something new on my liver from a CT scan I had done beginning on August.
How does secondary breast cancer affect your life?
Well its ruined me as a person I just don't feel I'm the same person since being diagnosed. I'm tired all the time I cant walk very far because of the pain in my legs, can't go and enjoy my dog walking I've got to rely on others. No sleep pain at night just can't physically do anything that I was able to do. I retired from work at 39 due to Ill health issues still makes me sad that I had to finish the job I loved doing as a nurse.
Can't enjoy sports with my children can't stand to long to be able to enjoy watching my children play rugby. Side effects from medication ups and downs from the side effects.
What advice would you give to someone newly diagnosed?
This is a hard one
Don't think that this is it I'm going to die. Yes I know you will as I did and its only natural but you got to be really strong positive because if you allow the C word to rule you, you will find it really hard to be strong not just for yourself
Your children,family and it will make you very depressed and you will be stuck in a rut. So you got to be super strong to fight this shit disease.
Jayne
Jayne Egan
Chislehurst
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
29th November 2021
Current treatment line:
Palbociclib
Letrazole
Denosumab
How does secondary breast cancer affect your life?
Impacted everything
My plans my body my mental state
What advice would you give to someone newly diagnosed?
It’s not easy to get your head together I’m still trying
Debbie
Debbie Rigby
Lancaster
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
15th October 2021
Current treatment line:
Hi I’m on zolodex monthly injection.. letrozole and ribociclib x I’m on my 6th cycle
How does secondary breast cancer affect your life?
At first I was devastated as I’d only just been told I was cancer free!!! Some days I actually forget I’ve got secondary cancer as I’m able to live life to the full. I do get achy legs at night due to the letrozole but other than that nothing else. I’ve come to terms with the fact I could die tomorrow from something else so live life to the full and enjoy it xx
What advice would you give to someone newly diagnosed?
I would say to anyone newly diagnosed, try and stay as positive as you can x we can do this. There’s new treatment coming out all the time x we are treatable x
Tina
Tina Ramshaw
Peterlee
Secondary breast cancer has affected me as a:
Parent
How does SBC affect you?
My daughter Sophie Louise was diagnosed with Triple Negative breast cancer in July 2017. She was 26 years old. I had never heard of someone so young having breast cancer. Unfortunately we were given the news in July 2018 that the cancer had spread to her brain. There was no hope and unfortunately she passed away just one month after on 20th August 2018. She was 27.
Sophie was my only child. She was my best friend, my whole world, my reason to breathe. I have been left with PTSD, depression and anxiety and my heart has been shattered into millions of pieces. It will never be repaired
Jayne
Jayne Brough
Nottingham
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
21st April 2022
Current treatment line:
First line treatment
Palbociclib
Denosumab
Anastrozole
Zoladex
How does secondary breast cancer affect your life?
Every day you think about it in some way or another. I’m tired, and suffer with some pain, and I get so frustrated that I can’t do certain things. However, although the dark thoughts sometimes haunt me, they are getting less frequent. I try to live each day to the full. Always have a full diary and try to fulfil as many of the plans as I can.
What advice would you give to someone newly diagnosed?
Cry if you want to. Shout if you want to, I did, and although it didn’t change the outcome it made me feel better, if only for a while.
Don’t Google!
Make plans and make memories with those you want to spend your time with.
And breathe….
Andrea
Andrea Tavendale
Scarborough
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
28th October 2020
Current treatment line:
I'm currently on Anastrozole, Ibrance, Clonidine & Zometa
How does secondary breast cancer affect your life?
It has effected me in such a negative way. I've always been the type of person to just let things go. But finding out you have breast cancer on your 31st birthday, then 11 days later finding out you have mbc is devasting. At the time of diagnosis I had 2 children under 4 and a thriving business. Due to treatment I had to slow my business down and focused on my family. And everytime I see the consultant I get told you lung cancer has spread and then you've got primary ovarian cancer is just a constant knock but I pick myself back up each time for my children
What advice would you give to someone newly diagnosed?
It's OK to cry. It's OK to scream & shout. Having cancer is a new normal that hopefully you'll gradually be able to live with. Make memories with the people who matter and love yourself
EMMA
EMMA cannon
London
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
11th March 2017
Current treatment line:
Weekly taxol I’ve been doing this since May 2020
It was interrupted for 15 radiotherapy sessions to my brain due to brain metastasis
How does secondary breast cancer affect your life?
I’ve got double vision from the brain metastasis and had my driving license revoked. Because of cancer and Covid combination I lost my clinic as I was shielded and unable to practice.
I have not been able to travel to my mobile home in France due to cancer and Covid
What advice would you give to someone newly diagnosed?
Take it one step at a time. Cancer strips you bare but instead of becoming a victim - let it be a teacher
darina
darina Gray
Bedford
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
19th January 2022
Current treatment line:
I am currently on Palbociclib, zoladex and Fulvestrant. I am meant to have bone strengthening injections but I am waiting for a tooth to be removed, therefore cannot have them. I am hoping have radiotherapy in the next few months also.
How does secondary breast cancer affect your life?
I was 26 when I was diagnosed with primary and am now 29, and was diagnosed in January. I have 2 young boys aged 3 and 4 and I struggle to lift them, play with them and do day to day things because of the pain in my back.
What advice would you give to someone newly diagnosed?
I am someone who is recently diagnosed, so I feel like I cannot give advice, however I can say what I don’t want to hear ‘you will be cured’ and ‘when does your treatment end’. Surprisingly I’ve heard this more than I thought I would. I’m trying to focus on my boys and husband, and make happy memories with them. I’m also trying to document my journey through Instagram which I find helps.
Samantha
Samantha Coomer
Reigate, Surrey
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
10th June 2019
Current treatment line:
I have just had a single mastectomy with a DIEP flap reconstruction. I have had 6 rounds of Chemo when I was first diagnosed. I have herceptin, perjeta and zometa every three weeks. I take tamoxifen daily and I have zoladex once a month. I will most probably be having radiotherapy too.
How does secondary breast cancer affect your life?
I am not as fit as I used to be. My arm joints hurt, I get hot flushes too. I also get stiff and sore where the secondary cancer is. There are constant hospital and doctor appointments that need to be made and gone to. I feel like my life and body belong to the oncology team and I don’t have control over it.
What advice would you give to someone newly diagnosed?
Friends and family are important. Live your life to the best of your ability. Live one day at a time.
Pauline
Pauline Breen
Somerset
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
18th December 2020
Current treatment line:
Capecitabine
How does secondary breast cancer affect your life?
Hands and feet are very sore, also finger prints are gone and fingers are so painful
What advice would you give to someone newly diagnosed?
It gets easier accepting your illness once there is a tŕeatment plan in place, I still have dark days but more good days, I'm treating this as a chronic disease as some ladies are in there 10th year or more
Kristine
Kristine Chadwick
London
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
20th March 2018
Current treatment line:
First line treatment:
6 rounds of docetaxel, trastuzumab, pertuzumab and zometa.
Surgery & 15 x radiotherapy
Now three weekly Trastuzumab & Pertuzumab, 3 monthly zometa and daily Tamoxifen
How does secondary breast cancer affect your life?
I knew I'd achieved success when I was diagnosed with SBC and friends and family flew half way round the world to be with me during my chemo treatment. People and memories are the most precious things and I appreciate them so much now.
What advice would you give to someone newly diagnosed?
Give yourself time: time to process the diagnosis. Time to accept the new you, your new normal and just the extra time it takes to do everything. Allow your body time to rest. Give yourself time to just be.
Don't try to go back to your old life, design a new one.
Sarah
Sarah Hawkey
Watford
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
24th December 2020
Current treatment line:
I am currently on 75g palbo been reduced from 125 to 100 then to 75 due to side effects and low blood count , letrizole and Denosumab. Had radiotherapy to neck skull and pelvis.
How does secondary breast cancer affect your life?
Unfortunately I had a late diagnosis of secondary breast cancer. I contacted my doctor in March with back pain explaining I was concerned it was my breast cancer returning but was treated with physiotherapy and painkillers, eventually in December after many phone calls (with now broken pelvis) and a lot of pain I was sent for blood tests for which the results were then an alert for scans! The scans reported secondary breast cancer to my spine all levels, neck, skull, ribs and whole pelvis. My life now is full of hospital appointments bloods injections and oncology. Have been really poorly on treatment sickness etc but now since reduced to 75g palbo no side effects and some quality of life, just hoping that the lower dose is effective in reducing spread of this awful disease.
What advice would you give to someone newly diagnosed?
Keep positive there are lots of treatments and trials now available . Keep healthy avoid anyone with infections colds etc but live life to the full make memories and spend time doing what you want to do with family and friends.
Jenna
Jenna Haskins
Bath
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
23rd May 2019
Current treatment line:
Currently receiving Phesgo injection every 3 weeks. This is my 1st line treatment following mastectomy, chemo, radiotherapy and stereotactic therapy.
I also take anastrazole tablets daily, have a monthly prostap injection and take venlafaxane to combat the menopausal side effects.
How does secondary breast cancer affect your life?
I’m very lucky that (touch wood) I do not have any real daily side effects from my treatment. I do however have to look at the scars on my body daily and the radiotherapy tattoos that are a constant reminder of what I have been through and still going through.
What advice would you give to someone newly diagnosed?
To always advocate for Yourself and your body. You know it better than anyone. Don’t always accept what has been said to you and get second, third, fourth opinions of it doesn’t feel right.
Live for today and grab every opportunity You can!
Viv
Viv Smith
Lincolnshire
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
8th July 2020
Current treatment line:
I was diagnosed with de novo secondary breast cancer which is oestrogen and progesterone postive/HER2 negative in July last year. I had not felt a lump until I developed a rash and dimpling to the skin. I had had hip and groin pain for the previous 6 months but an X-ray in February was clear and I was diagnosed as having bursitis. The pain never went away but I learned to manage it and it was only at my pre-chemo appointment that I mentioned it and the doctor suggested a bone scan. This showed a tumour on the spine and the ileac bone and suddenly I was told I had secondary breast cancer which was treatable but incurable. I had radiotherapy to my spine and ileac bone which has worked well before starting my first line treatment of ribociclib, letrozole, zoladex and desunomab. I have had a good response to treatment so far and am stable on this.
How does secondary breast cancer affect your life?
A secondary breast cancer diagnosis changes your life forever. No one would know I have stage 4 cancer to look at me and I am grateful I have minimal side effects so far on the treatment I'm on. Psychologically its much tougher, living in 3/4-month blocks from scan to scan isn't easy knowing that things can and do change in a heartbeat. I don't think I will ever get over the shock of the initial diagnosis but I am learning how to live with it. I try very hard to live in the moment more and spend time with the people I love and who lift me. I try to eliminate as much stress from my life as possible and keep doing the things I enjoy. For me, keeping busy, walking every day and seeing friends really helps. I take photos of everything now as every day is a memory. I love my life and have lots of living to do so remain positive that my disease will remain stable for many years.
What advice would you give to someone newly diagnosed?
Be kind to yourself and take one day, sometimes one hour at a time in those first difficult weeks and months. Everyone says it but don't google.... statistics are out of date and do not reflect the new treatments that are available today. You are individual and your journey is unique to you and will be different from someone else's. Reach out for support, I personally found Maggies and online support and friendship groups helpful. Speaking to others who just get it really helps me and I have met some amazing ladies through this diagnosis. Allow yourself time to come to terms with it all, sometimes, 15 months later, I am still blindsided by it. Listen to your body more and do what's right for you. I have been lucky to have supportive family and friends and spending time with them, doing normal things has helped me feel more normal again. It's hard to believe at first but you will smile and laugh again, feel joy again, make plans again. Most of all remember you are living with cancer.
Kerry
Kerry Allison
Shrewsbury
Secondary breast cancer has affected me as a:
Patient
Date of diagnosis:
11th January 2021
Current treatment line:
Initially urgent decompression surgery and insertion of 8 screws and 2 rods in my spine.
Abemaciclib, letrazole, densoumab, various pain killer and anti-emetics
Two sets of radiotherapy, one on spine, on on right hip...so far
How does secondary breast cancer affect your life?
Massively. It's taken away my future. I was an ultra runner doing 50, 100 and 200 mile races. I have been told no running to protect the scaffolding in my back. How do you cope when your coping mechanism has been taken away?
What advice would you give to someone newly diagnosed?
Get as much information as you can about your treatment, quiz everybody. Do not take the medical professionals at face value, query and question them...you have to be your own advocate.
Many different people - patients, family members, researchers, doctors, nurses and fundraisers - will share their stories about how secondary breast cancer affects them in our #SBC&Me series.
Please tell us your story and we'll add your voice to shout for more awareness, research and support for SBC.
Together we can Make 2nds Count.