Gillian was diagnosed with secondary breast cancer in January 2020. She tells us about the difficulties she faced getting diagnosed and what her life is like now.
I thought I could live the rest of my life cancer-free
Although I would always be at high risk for recurrence, I thought I would be able to live the rest of my life cancer-free.
Around three months after finishing treatment and being back at work, I started experiencing an ache in my neck and shoulders. I presumed it was just the stress of going back to a desk job.
Over the next four months, I went to my GP regularly with complaints about the pain. I was referred for physiotherapy. I remember sobbing at appointments with the GP and the physio because I couldn’t seem to get them to understand that my pain levels were increasing and my whole back was beginning to seize up on a daily basis. I couldn’t sleep. I could barely walk.
I was dismissive of my own pain
Despite the back problems and the escalating pain, it never once occurred to me that I should insist on asking for a scan or get someone to investigate any potential return of cancer. I was dismissive of my own pain.
It didn't helped that healthcare professionals frequently suggested to me that my aches and pains were likely a result of my body going through cancer treatment.
It was December 2019 by the time I was referred to a senior physiotherapist who suggested I have an MRI scan on my spine. I had the scan two weeks before Christmas and in January 2020 I received a call from my GP asking if I could come into the surgery as soon as possible. The physio had told the GP I needed to go to hospital immediately.
Once admitted into hospital, I was told I had to wear a neck brace. That was when I began to feel frightened. I was told I had secondary breast cancer, which was affecting my spine. Consequently, one of the vertebra in my neck had completely collapsed and was slightly pressing on my spinal cord. The worry was if the bone collapsed or moved any further, it would push right onto my spinal cord.
I had a two-week hospital stay and emergency surgery to remove the collapsed vertebra in my neck, which was replaced with metalwork. I noticed immediate pain relief – my back felt pain-free at last. I was so happy to be rid of the pain!
I felt like I’d been pushed off a cliff with no parachute
My old oncology team came to see me. I was reassured there was no indication the cancer had spread anywhere else. My hair had only just grown back to the length of a buzz cut, so I was very grateful to be told that I wouldn’t be having chemo again any time soon.
Despite the prognosis, there was no psychological or emotional support. I was sent home on my not-so-merry way, with no idea what to do next. I felt like I’d just been pushed off a cliff with no parachute.
So, that’s how my January 2020 started! Then Covid came along and the whole world suddenly learned what it was like to have to face your own mortality, your own fragile state of health.
The rest of the year passed in a strange blur. I had some more scares where it looked like the cancer was spreading despite my medication, so my treatment was switched. It was a waiting game in between each three-monthly scan period to see how the cancer was responding.
If you’ve had primary breast cancer, don’t ignore your body
When I reflect back over the past two years, I think about how, if someone had just taken my pain complaints more seriously, or if I’d reminded healthcare professionals about my high risk of cancer recurrence and pushed for a scan sooner, I wouldn’t have had the traumatic, shock secondary diagnosis in the way I did.
Being seen sooner wouldn’t have changed the diagnosis or the treatment, but I might not have needed emergency surgery. I spoke to a number of other people with secondary cancer and heard similar stories to mine. There is a silent pandemic going on. People who are at risk of secondary breast cancer are not being listened to, not getting the investigations or diagnoses that they should be.
If you’ve had primary breast cancer, don’t ignore your body. Don’t be afraid to get symptoms checked out. If you are suffering with pain, don’t dismiss it. Remind your GP/healthcare professional you’ve had cancer in the past and push to get yourself properly checked out.
Don’t let fear stop you from taking action because the consequences could be worse in the long run, and don’t be afraid to challenge health services either. It’s your body and you know it best.
Last year changed me in so many ways
Despite this traumatic journey, the strange world of lockdown helped me re-evaluate my life. I adopted a much more philosophical and spiritual approach to everything.
Unexpectedly, I started to feel so much better, both emotionally and physically. Once things had settled on my new medication, I began a full-time, work from home job. I took up online piano lessons. I started walking every day. I laughed as much as possible. I wrote my will and spoke to my partner, family and friends about death and what I wanted to happen if the disease got worse and I died sooner than I wanted to.
I felt like an enormous burden had been lifted, I was more carefree than I’d ever been.
In December 2020, I had some news I never thought I’d hear: ‘Your scan results show no visible signs of cancer’. Although it doesn’t mean I’m cured, it means my medication is working.
The cancer might still pop up in a few months’ time, or it might not. I don’t worry about it anymore. I accept things are what they are and I don’t waste time ruminating on the past or future.
I’m too busy living the life I should have lived before two rounds of cancer made me realise it.
We are sharing the voices of women with secondary breast cancer as part of our Unsurvivors campaign which highlights that 11,500 people still die from breast cancer every year in the UK. We’re demanding urgent change so that everyone with secondary breast cancer can live well for as long as possible. Until we're seen. Until we're heard.
If you have any questions or concerns about secondary breast cancer, you can call the Helpline on 0808 800 6000.
To find out more about the signs and symptoms of secondary breast cancer, visit our information pages.