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Living with Breast Cancer – A Patient's Perspective
Sep 03, 2020
Covid-19 will be forever etched on the minds of the world for many years to come. For me not only will I remember this year for the pandemic, but because I was diagnosed with HER2+ breast cancer in March.
Being diagnosed with cancer is life changing. You never think it will happen to you even though 1 in 21, 2 of us will have a cancer diagnosis at some point during our lives, and for 1 in 8 3, 4 that diagnosis will be breast cancer.
In January 2020 my left breast felt itchy, so I scratched it. But as I scratched, I felt a hardening. I decided to monitor over the coming weeks.
By late February the hardening was a little more obvious to the touch, so I made an appointment to see my GP on 9 March, expecting to be told it was nothing to worry about. Instead my GP referred me to my local breast clinic given my age and symptoms.
On 18 March I went to the breast clinic expecting to have a mammogram and the all-clear. But the mammogram revealed a lump, so I also had an ultrasound and biopsy. The consultant was honest with me, explaining the lump was likely to be cancerous and the biopsy would validate her diagnosis.
I was stunned. Shocked. I sat in my car and cried all the way home.
My biopsy results on 24 March gave me the news I had been fearing; I had HER2+ ER/PR- breast cancer with a 2.5cm tumour. And this was the good news. The bad news was that hospital services, including chemotherapy, were being suspended because of Covid-19. The surgeon explained that ordinarily I would have chemotherapy followed by a lumpectomy and radiotherapy, but this would not be possible. Instead he needed to defer to his multi-disciplinary team for collective guidance.
The gravity of having cancer amidst a pandemic was starting to sink in. I cried a lot. Why me? I felt angry and resentful that Covid-19 was potentially affecting my treatment.
On 26 March I met with the surgeon again. He explained the only option was to have a mastectomy to ensure complete removal of the tumour, as having chemotherapy was not safe given the escalating situation with Covid-19. Surgery would allow time for recovery, time to understand more about the effects of the pandemic, with chemotherapy to follow at a later date. I could see the surgeon’s decision weighed heavily but I knew options were limited. I had surgery on 31 March, so there was very little time to think about the journey ahead. Perhaps this was a blessing. I was one of the last patients to have surgery before the wards temporarily closed.
I started 12 cycles of weekly chemotherapy in May. Side effects are mostly mild with minimal hair loss due to scalp cooling. The fatigue is harder to manage and accept; I’ve gone from running half marathons to breathlessness just walking. But I know these symptoms are temporary and I trust that my medical team are doing the very best they can for my long-term health.
Having cancer is a life changing event. It alters you as a person and it forces you to evaluate everything you thought you knew and everything you thought you would be. It enables you to make connections with people you would never ordinarily meet or trust if it wasn’t for cancer.
Talking to others and sharing experiences is so important. I have an active Instagram page specifically for my cancer and I have downloaded and joined Belong: Beating Cancer Together, an app-based community which has enabled me to make friends with others living with my type of breast cancer. Having cancer is emotionally draining but I have found solace and inspiration from people I’ve met; support from people who know exactly how you feel cannot be underestimated.
The Belong Life app is designed specifically with the patient in mind. Communities within this app exist for all types of cancer and these have provided me with the opportunity to join discussions based on my type of cancer, location (I follow a UK-based community thread), types of side-effects, as well as being able to ask questions of oncologists, imaging experts and surgeons. I found the Belong app so easy to use and by setting alerts for the aspects of cancer I am most interested in, I can interact with others on specific topics quickly and easily. During my chemotherapy treatment I used the app most days, mainly to read threads and occasionally to post. I found it very comforting to know I was not alone. Within the oncology thread I also asked a couple of questions and was amazed at how quickly I received a reply.
Belong Life is free, and the app is available to download directly onto your smartphone or tablet. Once you’ve set up your profile you can connect with others quickly and easily and receive alerts when someone interacts with a post you’ve created or commented on. I would thoroughly recommend the app.
Apps like Belong Life are a lifeline. It’s not just about what Belong Life can do for me, but what I can also do to support others through the app who are just beginning to navigate through their cancer journey.
For more information on virtual patient communities like Belong: Beating Cancer Together, visit IQVIA.com/OPE
References:
1. https://www.cancerresearchuk.org/health-professional/cancer-statistics/risk
3. https://breastcancernow.org/about-us/media/facts-statistics
4. https://www.breastcancer.org/symptoms/understand_bc/statistics