By Aliki Kraterou
A dad who ignored his hearing problems as ‘a cold’ for more than two years was actually battling a super rare nose cancer which was attacking his skull.
Dad-of-three Ben Wilkinson, 42, had suffered with partial deafness he believed was due to frequent colds since 2016 but had always brushed off the symptoms.
But when the shift manager, from Longlevens, Gloucester, eventually underwent an MRI scan after visiting his GP for a mandatory hearing test in September 2017, doctors told him he had a four centimetre tumour at the base of his skull.
Diagnosed with adenocarcinoma, Ben underwent a grueling two and a half hour operation in May to remove part of the tumour but doctors could not remove it all because it is too close to critical nerves.
Ben, who lives with daughters Ella, 16, Lily, 11 and son Eli, five, and wife Bozena, 43, is now devastated the NHS has turned down his application for potentially life-saving proton beam therapy – as without this, there is a 50 percent chance of the cancer returning.
He said: “I had always had problems with my hearing. Every time I got a cold, my right ear got affected but I never thought anything of it.
“I had been to the doctors but as I always had had a cold it was dismissed as mucus from the cold.
“I was referred to an ENT from my GP at my Employers request as I had low results in my annual hearing tests for two years- It always seemed like I had a cold when I had the tests.
“When the MRI scan showed the mass behind my nose was a tumour close to the base of my skull, in that moment I knew it would be something bad.
“I was devastated when doctors told me it was a very rare type of cancer, so rare there was barely even a name for it.
“To make it worse, it was my daughter’s 16th birthday the same day.
“We only told our kids a week ago. I said to my wife that we need to tell them, I didn’t want them to find out any other way.
“We tried to comfort them and told them ‘daddy is going to be ok’.
“The cancer is invading my skull, and the tumour is very close to critical nerves linked to the communication system.
“I don’t want to be deaf – I am only 42, I want the best outcome possible for the rest of my life.
“I am still young, I have a family, and I want to be able to spend time with my kids.”
When Ben went under the knife in May this year, surgeons who went through his right nostril to attempt to remove the mass found it was located close to critical nerves linked to the brain’s communication system and the right carotid artery.
This meant they were not able to remove the whole tumour, so other options of therapy were discussed with Ben’s consultants.
One of the treatments was proton therapy, which, after researching, Ben decided was the best for him as it is specifically intended for the removal of tumours in sensitive areas such as the head or the spine, without damaging any healthy tissues as radiotherapy can do.
So in August, Ben applied to the NHS proton therapy panel for funding after his oncologist told him he fulfilled all requirements for the treatment.
But he says the NHS declined his application on the 17th of October and have since refused to tell him the reason he is unfit for treatment despite many calls and emails.
Ben said: “The only reason that I could see from my rejection letter was that they said it looked like maximal resection had not been achieved, which was one of the listed criteria.
“My surgeon had already confirmed he had taken out as much as he could without killing me.”
Ben and wife Bozena are now fundraising to go to Prague to have proton beam therapy at a cost of £66,500 for 38 cycles over eight to ten weeks and has raised more than £8,000 of their £70,000 target to date.
Without this he will be forced to undergo standard radiotherapy, which can have possible long-term complications such as problems with facial muscles, speech and eyesight.
Ben said: “After my operation, the surgeon told me what I had was called ‘adenocarcinoma’ and he had only seen three similar cases in 20 years.
“My hearing came back at 85 percent as the tumour had been pushing on my eustachian tube, which was what had been causing the hearing loss.
“I am just failing to understand why I am not a good fit for proton beam therapy.
“There are many long term complications with radiotherapy, and I want the best treatment.
“I have found a proton centre in Prague that confirmed I am suitable for the therapy, so I am trying to raise the funds to go.”
An NHS England spokesperson 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 PBT centres in Manchester which will open in 2018 and in London in 2020 to treat an estimated 1,500 cancer patients a year.”
To make a donation: go to https://www.gofundme.com/pt69n-my-husband039s-cancer-treatment