It was September 2023 and I was at home when I read that a drug with the potential to extend my life by six months had been rejected by NHS England.
It feels like people with secondary breast cancer aren’t seen as valuable enough to merit the cost, like a lifeline was taken.
I was diagnosed with secondary breast cancer in May 2022. The cancer had spread to my lungs, liver, abdominal lymph node, and pelvic bone, and a new grade 2 breast cancer was growing on my skin.
It’s treatable, but not curable.
I received the news over a phone call and was told I had three years left.
Breast Cancer Now #MoreTimeToLive
Help Breast Cancer Now fix the system for deciding which drugs are made available on the NHS in England. Visit action.breastcancernow.org
Hearing my diagnosis was devastating – not least because I’m a single mother to my 18-year-old daughter.
My primary breast cancer diagnosis was in December 2020. I had been referred after experiencing pain in my chest.
Because of Covid, there were delays, but after a mammogram and tests, I was finally diagnosed on 7th December 2020 with stage 2 breast cancer and told that I needed surgery straight away.
However, after a week I received a call to say that they were unable to book me into any hospitals, and had no idea how long it would take.
I was incredibly lucky that my mum called a private hospital and managed to get me a cancellation appointment. I was booked in for the 7th of January.
I was the last patient they would see before handing over to Covid patients.
I asked for a mastectomy and whatever it would take. I was recommended a lumpectomy, followed by 10 rounds of radiotherapy instead of the 20 rounds originally planned, due to Covid-induced backlog.
This made me incredibly nervous. Due to a clinical error they hadn’t processed my tumour to see whether I needed chemo, which was only discovered after I kept chasing them, having not heard anything for weeks post op.
They initially said there was a 50/50 chance of chemo, but decided my cancer probably wouldn’t respond to it.
I was put on Tamoxifen – a medicine that blocks cancer cells from using oestrogen to grow – and told to ‘go live my life’.
But I never felt well after that.
I lost weight, had constant chest pain and was rushed to hospital several times as a result.
I asked for a PET scan – which scans inside the body, often to check for cancer – repeatedly, but was refused.
I was finally given a CT in Jan 2022 and waited 6 weeks for results. I was told it was clear. However, a few weeks later I was called and told that someone in the cardiovascular department noticed some abnormalities on the lining of my lungs.
They said I had to come in for a PET scan, but assured me there was nothing to be worried about.
The PET picked up all the cancer. I then paid for the original CT to be re-read, where they said it did in fact show all of the cancer, destroying my trust in my local hospital.
What made it even worse was learning how few treatment options exist.
So when my oncologist told me in 2022 about Enhertu, I felt hopeful. But all that hope soon disappeared.
Despite being approved in Scotland – and 25 countries in Europe – women like me in England, Wales and Northern Ireland have been denied access to treatment that could extend our lives.
It’s utterly devastating.
How to check for signs of breast cancer
CoppaFeel! offers these simple steps on how to check your own chest for signs of cancer.
Look
- Look at your boobs, pecs or chest.
- Look at the area from your armpit, across and beneath your boobs, pecs or chest, and up to your collarbone.
Be aware of any changes in size, outline or shape and changes in skin such as puckering or dimpling.
Feel
- Feel each of your boobs, pecs or chest.
- Feel the area from your armpit, across and beneath your boobs, pecs or chest, and up to your collarbone.
Be aware of any changes in skin such as puckering or dimpling, or any lumps, bumps or skin thickening which are different from the opposite side.
Notice your nipples
- Look at each of your nipples.
Be aware of any nipple discharge that’s not milky, any bleeding from the nipple, any rash or crusting on or around your nipple area that doesn’t heal easily and any change in the position of your nipple
My daughter was 13 when I was diagnosed with primary breast cancer, and 15 when I was told I had incurable secondary breast cancer.
Every milestone she reaches is huge. I want to see her go to university, travel the world, build a career, get married, and have children.
I want to live my life too. There are still so many places I want to see.
Access to new, life-extending drugs means everything to me. So, I couldn’t sit back.
I joined Breast Cancer Now’s ‘Enhertu Emergency’ campaign. I shared a letter about the human impact of the decision with Wes Streeting and spoke to MPs about the treatment at the charity’s event in parliament
It felt empowering to show that this would not go unchallenged.
I was also one of 31 women who went topless outside Parliament last year, representing the number of lives that are lost to secondary breast cancer each day in the UK
We had been body painted by Sophie Tea Art beforehand – it was a real show of strength, support and solidarity.
When you’re living with secondary breast cancer, you imagine you’ll be wrapped up in care and support, not insurmountable red tape, and forced to advocate for your own survival.
Since the rejection of Enhertu, I’ve been supporting Breast Cancer Now’s new #MoreTimeToLive campaign, which is calling on the government to urgently change the system for deciding which drugs are made available on the NHS in England.
I shouldn’t have to spend the precious time I have left campaigning. I should be making memories with my daughter and my mum who deserve as much time with me as possible.
I’m also campaigning for the thousands of women who are desperately fighting for precious time with the people they love.
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