Giving hope to those affected
by secondary breast cancer
Research. Support. Education.
Giving hope to those affected
by secondary breast cancer
18th July 2023 by Jack Allan
In March 2021, I found a lump in my breast and went to my local GP – I was fast tracked as they thought it looked suspicious, within 10 days I had a breast clinic appointment at my local hospital, where I had a mammogram, ultrasound and 9 biopsies. The scans showed 3 lumps and swelling in my lymph nodes. I had to go to all these appointments and investigations alone due to Covid, I was told there and then it was cancer. It was hard to be alone receiving the news. After more scans it was discovered that the cancer had already spread from my breast to my spine which meant a diagnosis of secondary/metastatic breast cancer. Because I had never had primary breast cancer it made my diagnosis De Novo. I then had to come home to tell my family this life changing news. Telling my children aged 12 and 18 was incredibly hard, painful and distressing.
Initially my oncology team said no to surgery as generally those who are De Novo don’t have surgery. So, I started chemo, but within 6 months my treatment plan was changed to include a mastectomy. The chemo worked well on my breast and lymph nodes but not in my spine, so a spinal biopsy was carried out. This came back inconclusive so it was agreed that it would continue to be treated as metastatic cancer. I also have Fibromyalgia and herniated discs and degenerative disease in my spine that I was diagnosed with some years ago.
I had a single mastectomy and 27 lymph nodes removed 24 of which were cancerous. This was followed by radio therapy. 10 sessions on my spine and 15 on my chest, underarm and neck area.
My cancer is hormonal positive so is classed as triple positive.
My cancer is currently stable and has been since diagnosis, but the side effects of treatments and medications have taken their toll on my body. 1 year after my surgeries I was struggling with muscle weakness, extreme fatigue, unsteady on my feet and breathlessness and feeling really poorly. It was found that the radio therapy had affected my thyroid and so I now have an under-active thyroid for which I have to take medication. It was also found that my heart function was greatly reduced as a consequence of my Herceptin treatment (Phesgo) which resulted in a 7 month break from treatment and being put on heart medication.
I have my heart checked every 3 months and my body scanned every 3 months.
My medications and treatments have also caused me to go into a rapid menopause which has also caused significant quality of life affecting symptoms.
I have daily medication in the form of tablets, injection treatment every 3 weeks, a bone strengthening injection every 6 weeks and a hormone blocking injection into my tummy every 3 months I also have osteoarthritis as a result of medication which impacts my mobility significantly. It’s a lot!! And feels never ending but it’s keeping me stable so for that I am grateful.
Working for the NHS, In a community team, I have been able to keep working which was important to me. I’ve got an amazingly supportive manager and team of colleagues who really look after me and even organised a charity walk to raise money to allow us as a family to make memories together.
I live in a Welsh rural community and my oncologist is 2 hours away so m y 3 monthly appointments are via telephone. My radiotherapy treatment was a four hour round trip for 25 days which was exhausting. It does mean that supportive services aren’t always close by.
For me the biggest impact was the emotional toll on myself as well as my friends & family. I’m naturally an upbeat person but when newly diagnosed I was a real wobbly mess.
My parents and siblings all live in England and with covid restrictions it was 18 months before I could see my family face to face and hug them.
Luckily, I have amazing friends who are always there for me, with, messages, shopping, cooking, cleaning, drives out and fun trips out and lots of love.
My boys and family have struggled to cope with processing it all, especially combined with covid times. I am open and honest with everyone. As a family we are sarcastic and we have a dry sense of humour about things. We tend to focus on the here and now rather than what may come further down the line for us as a family.
In Pembrokeshire we have breast cancer specialist nurses but not one that is secondary breast cancer specific, however my GP, oncologist and chemo unit staff are very supportive.
Finding resources and information was really hard – I don’t have a local McMillan’s other than telephone contact or a Maggie’s service in the county.
I feel there is a need for more SBC specialist nurses and have spoken to my local oncology team about this. Despite it being the first thing that you are told not to do – I googled everything because I simply had no prior experience of breast cancer or knowledge. It’s assumed as a secondary breast cancer patient that you’ve had primary, but I didn’t.
The information my GP and nursing team provided was very primary focused, I didn’t recognise myself or my own symptoms in a lot of the information I received. When I went online I found Breast Cancer Now and McMillan – but still nothing solely focused on SBC.
I am a regular user of Facebook and social media so searched groups to join, from there I was introduced to a Welsh online support group which now also has a West Wales group, Stage Four Deserves More and Make 2nds Count.
From connecting with women within the secondary breast cancer community on Facebook.
I had just started my treatment in April 2021, when I found the group of Facebook and had been lurking around getting knowledge, advice and support. It was mentioned that they were running two retreats. So, I applied and got a place! I was very surprised but delighted.
I travelled all the way up to Scotland in the August for the retreat, not knowing really what to expect and was met by a team of charity volunteers and a group of women who all have secondary breast cancer. The bond with these women was instant and life changing, and we were able to share experiences, knowledge and to laugh, so much laughter was had. We were united by our cancer.
Most other attendees were further down the line in their cancer journey and treatment than me. I was really struggling with coping with it all following the heavy treatment as well as still processing my terminal diagnosis. Meeting these women, hearing their stories seeing the good times they’ve had since diagnosis gave me real hope that you can LIVE with this disease. Have a good quality of life, still have adventures and be ‘me’ again I was just so inspired.
We all kept in touch and still do regularly but sadly have lost 7 ladies from our group. Each loss hits hard, knowing them and sharing our deepest darkest fears with each other knowing that one day this will be our fate too. I would never have met or been involved with these women in ‘normal life’ our paths would never of crossed but the love felt amongst us is strong. I was so fortunate to have met them and have them in my life. Make 2nds Count made that happen.
I’ve also benefitted from so many of the other services that M2C provides, from the Little Lifts boxes, the Facebook Community Support Group for asking others questions and sharing knowledge, and of course the Tea & A Chat online support, Well-being Week workshops and the Book Club.
Anxiety hit me hard and that was something I hadn’t really experienced before, I’m coping better now but it’s there, especially when you’re waiting for scan results and test results.
The endless appointments can be a lot, but for me it’s important that I am seen as more than my diagnosis. I don’t want my whole world to be about cancer. I want people to remember I’m still Mandy!
Being positive is important to me and as a rule who I am, negativity is not healthy and, in my opinion, will make things worse.
I have also learnt to accept help when offered. Something I’m not very good at. I’m fiercely independent and stubborn but slowly learning to let people support me when I need it.
I’ve mainly learned to be grateful for the little things, to others they may seem little but now they are really the big things. Waking up each day is a blessing, living by the sea, having a lovely home, working, being surrounded by amazing friends and family. Quality time with my two boys and being able to travel again– this last year alone I have been to Morocco, Egypt, Krakow and Disney. Quality of life is important to me and having new experiences with my special people is everything.
I am resilient, strong and determined but it’s ok to not be ok, to have wobbles, as long as you don’t wallow for too long in them.
You not alone, there are others who can support you, help you and understand what you are going through. Reach out for support. Take time to process the diagnosis and don’t brush it under the carpet, get support for your mental health. Ask questions, be vocal in your appointments.
Things do improve – it is hard and harsh to start with, but it does get better. You will find yourself again. The side effects and symptoms ease and you’ll be able to not be overwhelmed by it all in time.
Take a notebook and write everything down, keep a calendar for appointments. Be your own advocate and have the right people around you. Go to professional sites when seeking advice and information.
Join the Make 2nds Count community.
Surround yourself with good people, positive vibes and fresh air.
Spend time in nature, do things that you love and keep your body and mind as fit and healthy as you can.
Always be kind to yourself.
Note - West Wales Group – funded by Moondance and McMillan, has shared info about M2C but doesn’t want to step on toes. Will discuss with her contact there.
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