1st UK breast cancer patient to have proton beam therapy

WalesOnline reports Jan Johnson from Gowerton will become the first breast cancer patient to receive proton beam therapy in the UK.

Proton beam therapy is a different type of radiotherapy. It uses a high energy beam of protons rather than high energy X-rays to deliver a dose of radiotherapy for patients with cancer. It is a new treatment, used more in the US than in the UK.

Jan Johnson, who runs Phantom Prestige Car Hire in Swansea, said “I have triple negative breast cancer, I was diagnosed on May 4 this year. I had a mammogram and a biopsy that day, and on the eleventh they told me I had to have a lumpectomy, in which the tumor was successfully removed. The good news was that it hadn’t gone to the lymph nodes or the healthy tissue, or my brain, however this triple negative breast cancer is quite an aggressive one. They want me to have radiotherapy and chemotherapy, but I don’t want that. This proton beam therapy is used a lot in America, and it’s very precise. So after a lot of research I decided this was something I wanted. It would ensure that no other part of me would be damaged, my healthy left breast, my heart or my lungs. We have this equipment in Wales, and it would be a shame not to use it.”

She said she went through her health insurance to ask them to fund it. She said she’d been with the same provider for thirty years and had never had to use it “but when I phoned them up they said they wouldn’t cover this proton beam therapy, because it was experimental treatment. It’s used successfully in America, so it’s not experimental, it’s much more focused and safer, but they refused. That delayed my treatment somewhat, trying to convince them to cover it.”

Proton beam therapy is available to NHS patients in Wales and England for certain conditions although currently patients have to go abroad. The NHS does not fund proton beam therapy for breast cancer as they say there is no evidence that it is any more effective than alternative treatments.

A spokesperson for the NHS England said “The NHS does fund proton beam therapy in this country and internationally where top doctors say it is advantageous, but it is not always clinically appropriate or a better treatment than other options already available on the NHS. Together with the Department of Health and Social Care we are also now funding the development of two new world class proton beam therapy centres in Manchester which will open in 2018 and in London in 2020 to treat an estimated 1,500 cancer patients a year.”

Welsh patients will be able to access the therapy at these two new centres once they are open.

Jan Johnson and her husband have had to pay over £66,600 for the treatment. She said “Obviously we didn’t have that much, so we’ve had to find ways of making it up. They ran tests on me to see the difference between traditional radiotherapy and the proton beam therapy, and there would be damage to my heart and lungs with the radiotherapy, but there was nothing with the proton beam. No damage at all. So on Monday, at twelve o’clock, at the Rutherford Cancer Centre in Newport, I’ll be the first breast cancer patient in the UK to have this treatment. It has been stressful. I never thought this would be happening.

“I’m really excited, and it’s not just about me, I just think if this treatment is available to make people’s lives better, it should be available. There are no side-effects at all, not even burns like with traditional radiotherapy, it’s amazing. I do think in five years time everyone will be treated with the proton beam therapy, I think it’ll be common practise. I just want to change it for everyone coming after me.”

She said a lot of women with breast cancer couldn’t afford to be ill from the chemotherapy. She said “A lot of them have to work or have children, they can’t afford to take time away. I think everyone should be having this. When I was diagnosed, I said I’m bigger than cancer and I’m going to get rid of it and it’s not going to beat me. And I’ve never let it get me down. I’m looking forward now though, getting the treatment and getting it over with, and changing the world for everybody else.”

Earlier this year Simon Hardacre became the first cancer patient in the UK to receive proton beam therapy. He was found to have an aggressive form of prostate cancer and received his treatment at the Rutherford Cancer Centre in Newport in April.

Proton beam therapy uses beams of protons which are speeded up in a particle accelerator. The protons are then fired into cancerous cells, killing them. Once they hit the cell, they stop, which means there is less damage to surrounding tissue than with conventional radiotherapy. The procedure is most effective in areas where the cancer is in a critical part of the body, such as the brain, where damage to surrounding tissues could be particularly harmful.

According to the NHS website, Cancer Research UK estimates that proton beam therapy would only be suitable for one in a hundred people with cancer.

Opinion remains divided on its effectiveness compared with traditional treatments.

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