Giving hope to those affected
by secondary breast cancer
Research. Support. Education.
Giving hope to those affected
by secondary breast cancer
"I'm Sammy Burrow. I’m 56 and live in the Holmfirth area with my husband and our dog and, occasionally, our two grown-up children. I taught children with SEND but I took early retirement due to my condition.
I was diagnosed with SBC in September 2023. Due to having previously had primary breast cancer 13 years before, my GP referred me for tests to eliminate that as a cause for another medical issue. After various scans it became apparent that I had signs of cancer again. I then had a biopsy which was a very delicate procedure due to the most accessible lesion being in a precarious position. I had to keep very still! The result showed that the original cancer had returned and spread to my peritoneum, some bones and near one ovary.
Previously, in 2010 I had been diagnosed with primary lobular breast cancer for which I had a mastectomy, 12 weeks of chemotherapy, and ancillary surgery to remove some lymph nodes, followed by adjuvant hormonal treatment for 10 years. This treatment triggered an early crash menopause. It was a very challenging time to endure all the treatment and the menopause with two young children and a job to go back to but I knew that the treatment would eventually finish. SBC is different to this as it is currently incurable and treatment is continuous. I also had full breast reconstruction which included a second preventative mastectomy as advised by my consultant.
My SBC diagnosis was a complete shock. I had endured a long treatment for the primary cancer which I had hoped would prevent a re-occurrence. No spread had been detected in scans I had when they found my primary cancer apart from in the lymph nodes. I didn’t appear to have any obvious signs of SBC and anything I did experience could be linked to other things like low iron or changes in my body that were caused by previous breast cancer treatment. But I did notice I looked pale and I tired more easily.
I am currently on my first line of treatment which is an endocrine and hormonal therapy along with a regular intravenous bone protector. In the beginning I was put on the highest dosage of endocrine therapy and at first this was a shock to my body causing many side effects including a very low white blood cell and neutrophil count. This meant that I kept having to pause treatment to give my blood cells a chance to recover. After a few attempts at this my Oncologist lowered my dosage and my body was able to tolerate it so that I could have my treatment regularly.
I experience various symptoms but I feel lucky that I can mostly tolerate these and that, most importantly, the treatment is currently working to keep the cancer at bay. So far, I have been stable for nearly 2 years. It is good to know that there are other potential treatments out there and trials for new drugs/combinations of drugs that could be suitable for me if and when the cancer changes.
One of the most debilitating physical side-effects for me is fatigue which is more than just feeling tired - my whole body aches, feels sapped of energy and feels hyper-sensitive, like having very bad flu. Fatigue can come on suddenly and can affect my thinking. It can be hard to achieve even small daily activities and I have learned to alter my life into a sort of “effort then rest” rhythm. I find that exercise can help with fatigue which can seem counter-intuitive at first and you have to learn to exercise gently and when it feels right.
SBC has had a significant impact on my life and affected those around me. It is very hard for anyone to hear that they have something life-limiting that cannot currently be cured. For myself, I try my best to live with the cancer rather than against it, accepting a new rhythm but not allowing it to dictate everything I do and think. I try to allow myself to acknowledge feelings of fear and sadness, but remind myself that I don’t want to spend much of my time worrying about what is happening in my body and about the uncertainty of the future. Instead I try to focus on life around me, noticing it and spending time doing the things and being with the people I care about. I try, as best as I can, to avoid putting my body in a state of worry and stress as I believe this doesn’t help to keep the cancer at bay.
I am learning to forgive myself for not doing spectacular, big bucket-list things all the time. I feel grateful for being able to share my life with people who matter to me and doing things I care about. Retiring has helped with all this, but I have to admit I do get bored and I am still learning to lead a more relaxed life at the same time as finding new interests I can comfortably access. Working out who you are and what you want to do when you retire and your kids have grown up can be a journey in itself, adding cancer treatment into the mix can make you feel a little lost.
Organisations like Make 2nds Count have genuinely helped me with this. I found Make 2nds Count through another support group, Maggies West Yorkshire. I found out about the retreats they run and that they were doing their first Patient Summit in 2024. I attended this on line and gained so much knowledge about the disease, its treatment, the latest research and ways to live with it. I was so impressed with the Summit and inspired by the charity that I decided to become more involved. I did an abseil to raise money then applied to be an ambassador for the charity. I also attended the wonderful M2C Patient Summit in Liverpool this year and I have accessed their Trials Service so that I am aware of cancer trials I can apply for if I need to.
With the Huddersfield Tea and Chat group, I want to set up a support group in my local area of Kirklees as there are quite a few of us here (3 big hospitals!) and the only support groups specifically for SBC are quite far for us to travel. When I attended my first support group meeting it gave me so much hope and knowledge, it helped me to better understand my new journey. It also provided me with a fabulous group of people who really understand and with whom I can laugh and cry. These groups can be a great source of information and advice too. I would like to provide a similar safe space for people in Kirklees to help them to live with their SBC."
The Huddersfield Tea & Chat starts on 10 September. Find out more: https://make2ndscount.co.uk/support/community/tea-and-chat/tea-and-chat-huddersfield
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