A father-of-three, who was left baffled when a lump like a "little finger under the skin" turned out to be a form of skin cancer, is cycling 1,000 miles to fund the kind of research that saved his life.
Tom Payne, 55 from Chalfont St Peter, felt an unusual lump in his groin in November 2018. There was nothing visible on the surface of the skin but when it did not go away, Tom decided to get it checked by his GP.
“The doctor examined me and said it felt like a reactive lymph node that could be due to an infection or an injury and wanted to see if it settled down,” said Tom, who lives with wife Louise and children Nicole, 23, Callum, 22 and Jamie, 20.
Two months passed by and concerned that the lump was still there, Tom returned to his GP.
“In January 2019 I was sent for an ultra-sound scan and the consultant at Stoke Mandeville Hospital said we ought to take a biopsy. As soon as they opened the skin they could see immediately that there was something wrong and said, ‘We need to take the lump out.’”
Tests revealed the ‘little finger’ Tom had been feeling was in fact where the lymph nodes in his groin had been invaded by malignant melanoma - a type of skin cancer.
In a rare case, the consultant discovered it had spread from somewhere else in the body but could not locate the original source of the cancer.
Unaware of the diagnosis, Tom, an IT consultant, continued to work while he waited for the biopsy results. He said: “I had caught the train to London to see a client. I had just arrived when my wife called to say, ‘the consultant wants to speak to you - today.’
“It’s the only time in my life that someone had said to me, ‘you need to come in now’. It was unambiguous that this was something that really needed to be looked at. I immediately got the train back and headed straight there.
“I remember it was Tuesday 19th February when the consultant told me: ‘You’ve been diagnosed with metastatic malignant melanoma.’
“The rest is all a bit of a blur. You don’t expect to hear that and then when you do hear it you don’t really know what it is. I thought I simply had a lump in my groin. I remember thinking, ‘It’s not sore, it didn’t hurt. Why here?’ So, you have to try to work out what it is, as a disease.
“I was offered support from a specialist cancer nurse and the first time I called her for information about my diagnosis, I remember her saying: ‘It’s so good - this used to be death sentence.’ Then she talked me through how treatable melanoma now is thanks to research.”
Tom decided not to tell his children about the lumps he had found until he knew what he was facing. When he shared the news he had been given, Callum was at university, Jamie was about to take his mock A-Levels and Nicole was studying abroad.
Nicole said: “Because I was in Malaysia, they didn’t tell me anything about finding a lump until they knew more. But then Dad called to say: ‘I’ve got this diagnosis’ which was so weird to hear when you’re thousands of miles away.”
Scans showed the melanoma had thankfully not reached any organs which meant his cancer was graded at Stage 3C. But because two of Tom’s lymph nodes were affected, in April that year, Tom had a type of surgery called a lymphadenectomy, to remove 11 more. Tests revealed four of those had also been infected by the melanoma.
“It was good that the cancer had not spread wildly but the recovery from the removal of the lymph nodes was one of the toughest parts for me. I have a scar five to six inches long,” said Tom.
In the two months it took to get over the surgery, Tom also contracted cellulitis in his wound and at a time when he was feeling his worst, he received a much-needed surprise.
“I decided to come home to see mum and dad, but I didn’t tell them I was coming,” said Nicole. “My brother picked me up from the airport and brought me home and it was just a great mood boost. I remember dad was just walking around with all these lines and bags coming out of him. They really needed a morale boost so I stayed for two weeks.”
By May, Tom was ready to begin the next step in his treatment. Thanks to research, an immunotherapy drug, Pembrolizumab, had recently been approved by NICE (National Institute for Clinical Excellence) as an effective treatment for patients with melanoma. It works by stimulating the immune system to recognise and kill cancer cells.
“If there’s a medical expert that says that’s what I ought to do, that’s what I ought to do. So, I had my immunotherapy treatment once every three weeks for a year. I used to drive to my appointments but once I was fit enough, I cycled to my treatment. I kept thinking ‘I’m not going to let this beat me.’”
Two and a half years after Tom’s initial diagnosis, regular checks have revealed there is no evidence of cancer in his body. He’s acutely aware of how previous research has contributed to the success of his own cancer treatment and will be hopping on his bike once again, to make sure others are helped in the same way.
Tom, joined by his family, is cycling 1,000 miles from Lands End to John ‘O Groats as part of Cancer Research UK’s Cycle 300 challenge. The event encourages people to raise sponsorship by cycling 300 miles throughout September but the Payne family is collectively looking to ride more than thirteen times the required distance.
Tom, Louise, Nicole and Callum set off on September 1, with Jamie driving the support vehicle alongside. It is set to take two weeks to complete and Tom considers the adventure they are sharing together all the more valuable after such an unpredictable diagnosis.
“I’m just so happy that this ride is even possible,” he said. “It is really emotional and it is so hard to put into words what it means."
Although Tom was treated for skin cancer, the family has chosen for their donations to go towards research into pancreatic cancer after a close friend was recently diagnosed with the disease. At present, he faces a much more uncertain outcome.
“For me, the key thing was that immunotherapy is relatively successful for melanoma and if we can find a treatment like that for pancreatic cancer, we can really change how it’s treated and the outlook for people.
“I’ve learnt that we can all make a difference, every penny we raise and every little bit we do makes a difference. Fundamentally it made the difference of life to me and I want to do the same for other people - funding the research that can help them.”
The Payne Family is hoping to raise a minimum of £3,000 and their page currently stands at £1,200. Donations can be made at: fundraise.cancerresearchuk.org/page/paynes-lejog-1000-mile-challenge
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