A mother-of-two, who has been given 12 months to live, says she feels “let down” by the NHS.
Darina Gray, 30, from Bedford, discovered a lump in her left breast after having her second child in 2019 and underwent a double mastectomy to remove the tumour.
“I decided not to breastfeed because I’d really struggled with my firstborn,” she said. “So I let my milk dry out and once it had completely dried out, I noticed a lump in my left breast.”
Darina made a GP appointment and was referred to Bedford Hospital. She was diagnosed with stage one, grade three invasive ductal carcinoma – a cancer that begins in the lining of the breast and spreads to other tissues in the breast.
She was given the all-clear in December 2019, but two years later the cancer returned, spreading to her liver, spine, lymph nodes and bones.
However, in 2021 Darina started to suffer from constant headaches and back pain, which she later discovered to be symptoms of secondary breast cancer.
“I’d bent down to put my son’s coat away and felt a stinging pain in my left side, right where I was originally diagnosed with breast cancer,” she said. “I looked down and saw little dimples in the skin and I knew it wasn’t right.”
Darina said she struggled to find an appointment during the holiday period.
She contacted the breast care team at Bedford Hospital but was unable to get an appointment until the end of the month so travelled to a private clinic in Milton Keynes for biopsies and a CT scan.
“My oncologist told me about a treatment called Enhertu that isn’t yet approved in the UK but has been approved in the US.” It is under review for use in the UK for Darina’s type of cancer.
The treatment will set Darina back around £10,000 per round, which she will need once every three weeks.
Last week, Darina’s cousin started an online campaign to raise money. Darina said: “Unbelievably, within three days we raised £40,000, which meant I was able to go in for my first round of Enhertu at The Royal Marsden.
“It felt so weird paying £10,000 at reception for it but I feel incredibly grateful too.”
Darina is hoping she can continue to receive the treatment while she waits for it to be made available for her type of cancer on the NHS.
She is raising money for treatment unavailable on the NHS so she can extend her life and watch her children grow up, after she says she feels “let down” by the NHS.
Darina, who lives with her husband Jonny, 32, a contract manager, and their two children, Marley, five, and Cobi, four, said: “I do feel let down by the NHS. I couldn’t get an appointment with my breast care team and had to go private to be diagnosed and now I’m fundraising to get treatment.
“The treatment I’m seeking isn’t currently available on the NHS for my type of cancer, and while there is talk of it being made available in the coming months, I can’t wait that long.”
She added: “My cancer is incurable and without immediate, targeted treatment I’ve been given 12 months to live. I have so much to live for and I’m not ready to go yet.”
She says that the prospect of getting access to the drug makes her feel “optimistic”.
A spokesperson at Bedfordshire Hospitals NHS Foundation Trust said: “As we need to protect patient confidentiality at all times, we do not comment on individual cases – however we are really sorry to hear of this.
“Patients treated for breast cancer receive annual follow-up appointments for five years, have direct access to breast care nurses and are fast-tracked for appointments without having to go back to the GP.
“Like all NHS trusts we are currently experiencing high levels of cancer referrals and are working extremely hard to see and treat patients in a timely matter.”
The National Institute for Health and Care Excellence recently began its evaluation of Enhertu for treating HER2-low metastatic or unresectable breast cancer after chemotherapy.
The first committee meeting to consider Enhertu for this indication is scheduled for September 5, with final recommendations due in November.
Additional reporting from PA.
