A triple father who had his ear problems as a cold for more than two years was eventually diagnosed with a rare nasal cancer that "invades the skull."
Ben Wilkinson, 42, of Longlevens, Gloucester, lost his right ear hearing in 2016 due to his frequent colds.
It was not until his GP recommended an MRI scan in September of last year after a routine hearing test that doctors found that the shift leader had a 4 cm tumor behind his nose at the skull base.
Mr. Wilkinson was diagnosed with adenocarcinoma, and in May a two-and-a-half-hour operation was performed to remove the tumor.
However, since the mass is near critical nerves, only part of it could be removed.
Mr. Wilkinson was told he could have radiotherapy to reduce growth. However, this can damage the healthy surrounding tissue so that patients can no longer swallow, see or hear.
The NHS has rejected its application for more accurate proton beam therapy, although doctors have a 50 percent chance that their cancer will return without them.
Ben Wilkinson rejected his hearing loss for more than two years as a cold. Only when his family doctor recommended an MRI scan after a hearing test, he was diagnosed with a rare cancer behind his nose. It is imaged after surgery to remove part of the growth
Although he was diagnosed in September, Mr. Wilkinson told his children last week that he is ill. From left to right, his stepdaughter Ella (16), wife Bozena (43), daughter Lily (11) and son Eli (5) can be seen. His tumor is too close to his critical nerves to be completely removed
An MRI scan showed that there is a tumor at the skull base behind his nose. This pushed a tube into Mr. Wilkinson's middle ear, which affected his hearing. An operation to remove part of the tumor increased his hearing by 85 percent, but the mass will come back at 50 percent
Of his first symptoms, Mr. Wilkinson said, "I've always had problems with my hearing. Every time I had a cold, my right ear was affected, but I never thought of it.
"I had been to the doctors, but since I always had a cold, it was rejected as a slime from the cold.
"At the request of my employer, I was referred to an ENT doctor from my family doctor because I had poor results in my annual hearing tests for two years. It always seemed like I had a cold when I had the tests. "
Mr. Wilkinson then underwent an MRI scan showing his tumor.
"I was devastated when the doctors said it was a very rare cancer, so rare that there was hardly a name for it," he said.
"To make matters worse, my daughter's sixteenth birthday was born on the same day.
"We told our children only a week ago. I said to my wife that we have to tell them I did not want them to find another way.
"We tried to comfort her and told her," Daddy is fine. "
Despite a brave face, radiotherapy for cancer treatment could numb Mr. Wilkinson while he kills death.
"The cancer invades my skull and the tumor is very close to critical nerves connected to the communication system.
"I am still young, I have a family and I would like to spend time with my children."
Mr. Wilkinson (pictured with Eli) was told that the cancer "invades his skull." Although radiotherapy can treat the tumor, it often damages healthy tissue so patients can not see or hear. "I'm still young, I want to spend time with my children," he said
After a surgical procedure to remove some of the growth, the doctors told Mr. Wilkinson that he had adenocarcinoma that his surgeon had seen three times in 20 years. Mr. Wilkinson applied for proton beam therapy targeting the tumor at the NHS, but was denied
In May of this year, Mr. Wilkinson went under the knife while surgeons went through his right nostril to remove the mass.
They found, however, that they were near critical nerves connected to the brain's communication system and the right carotid artery that carries blood to the head and neck.
"After surgery, the surgeon told me what I called" adenocarcinoma, "and he'd only seen three similar cases in 20 years," Wilkinson said.
"My hearing came back 85 percent because the tumor was pushed on my Eustachian tube, which caused the hearing loss."
WHAT IS ADENOCARCINOMA?
Adenocarcinoma is a cancer that attacks the mucous secretion glands throughout the body.
It can occur anywhere, but is most common in:
- The lung adenocarcinoma is the most common form of non-small cell lung carcinoma, accounting for 80 percent of lung cancers
- Prostate adenocarcinoma accounts for 99 percent of all prostate cancers
- Esophageal adenocarcinoma is the most common type
- Colorectal adenocarcinoma accounts for 95 percent of colon and rectal cancers
The treatment depends on where the cancer grows in the body.
It may involve surgery to remove the cancerous tissue.
Radiation and chemotherapy can also be used in combination with surgery.
Source: Cancer treatment centers of America
The tumor could not be removed. The doctors discussed Mr. Wilkinson's other options, one of which was proton beam therapy.
According to his own research, Mr. Wilkinson discovered that this treatment is specifically designed to remove tumors in sensitive areas, such as the head or spine, without harming healthy tissue, unlike radiotherapy.
In August, Mr Wilkinson applied to the NHS Proton Therapy Panel for funding after his oncologist told him that he met all the conditions for the treatment.
He claims, however, that the NHS rejected his application on October 17 and refused to tell him why, despite many phone calls and e-mails.
"The only reason I could see from my refusal letter was that they said the maximum resection was not achieved, which was one of the listed criteria," Wilkinson said.
"My surgeon had already confirmed that he had taken out as much as possible without killing me."
Mr. Wilkinson and his wife, Bozena, 43, are currently donating funds to go to Prague to receive proton beam therapy for a price of £ 66,500 for 38 cycles over eight to ten weeks.
They have raised more than £ 8,000 from their £ 70,000 goal to date.
Without this treatment, Mr. Wilkinson will have to undergo normal radiotherapy that can affect facial muscles, speech, and vision.
"I just do not understand why I'm not well suited for proton beam therapy," he said.
"There are many long-term complications in radiotherapy, and I want the best treatment."
A NHS England spokesperson said: "The NHS is funding proton radiation therapy in this country and internationally, where top-level physicians consider it beneficial, but it is not always clinically appropriate or better than other options already available in the NHS.
"Together with the Ministry of Health and Welfare, we are now financing the development of two new world-class PBT centers in Manchester, to be opened in London in 2018 and 2020 to treat an estimated 1,500 cancer patients each year."