SBC &amp; Me

Zach

Birmingham West Midlands

Tam

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.

Mandy

Northampton

Kerry

Keith

Andrea

Scarborough

Rosaline

Balsall Common, Solihull

Rose

Jersey

Pamela

Warwickshire

Kelly

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!

Fran

Leeds

Helen

Brighton

Heather

Newcastle

Nina

Pembrokeshire South West Wales

Grace

Burley in Wharfedale

Laura

Thirsk, North Yorkshire

Natalie

Warrington

Sarah

Watford

Debbie

Lancaster

Mandy

jennifer

Bishops stortford

laura

Northern Ireland

Vanda

NORTHERN IRELAND

Gemma

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.

Sarah

Weston-super-Mare

Danielle

North Cyprus and Somerset

Karen

Worcester

Lyndsey

Scottish Borders

Stephanie

Huddersfield

Emma

South Oxfordshire

Jane

East Kilbride

Joanne

Birmingham West Midlands

Tracy

Uxbridge, Middlesex

Alice

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'.

Pamela

Charlotte

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.

Karen

Derbyshire

Lisa

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.

Nuala

Billericay, Essex

Laura

Rebecca

Lizzi

Northamptonshire

Annemarie

South yorkshire

Suzan

Dundee

Claire

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.

Lucy

Worcester

Diane

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.

Kate

Liverpool

Lynne

Cupar

Angie

Wrexham north wales

Sarah

Kirkella, near Hull

Nikki

Wirral

Sue

South Wales

Claire

Glasgow

Donna

Llanelli WALES

Debbie

Worcester

Kate

Fran

Karen

Midhurst, West Sussex

Shirley

Ayrshire, Scotland

Viv

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.

Karen

Maidstone, Kent

Sarah

North Wales

Chantelle

Diane

Aberdeen

Georgina

Chester

Vivienne

Louisa

South Yorkshire

Cathy

Anglesey

Amy

Norwich

Jackie

Wirral

Jon

Kent

Kristine

Alison

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.

Donna

Surrey

Jo-Anne

Tina

Peterlee

Chloe

Wendy

Norfolk

Katie

East Sussex

Gillian

Kirkcaldy,Fife

Gill

Southport

Di

Shropshire

Kimberly

Chester

Lorraine

United Kingdom

Susan

Northumberland

Laurie

Shoreham By Sea West Sussex

Susan

Barnsley

Vicki

Birmingham

Charlotte

Sheffield

Lesley

Anne

Suffolk

Emma

Hertfordshire

Gemma

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.

Jenna

Bath

Rosaline

Solihull

darina

Bedford

Jayne

Nottingham

Annemarie

Doncaster

Rebecca

Wantage, Oxfordshire

Rebecca

Bradford

Vanessa

Oxfordshire

Danielle

Jayne

Chislehurst

Lorna

Crewe, Cheshire

Colin

Kirstin

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.

Samantha

Reigate, Surrey

Rachel

Devon

Katharine

Kent

EMMA