Michael Douglas: 31 Days in the Life of a Throat Cancer Patient

Cancer patient describes losing taste, raw throat and permanent jaw damage.

September 2, 2010, 5:24 PM

Sept. 3, 2010— -- Scott, a 66-year-old high-tech consultant from Silicon Valley, thought the small lump he detected under his jaw line while shaving about two years ago was caused by allergies.

Doctors eventually discovered the small growth on the back of his tongue was throat cancer. The growth was in the same location as that of 65-year-old actor Michael Douglas..

Scott didn't want his last name used and at first was hesitant to talk about his grueling cancer treatment, which just ended Aug. 23.

"I have a clear sense that some of my customers are suspect of being around people with illness and would bolt if they thought I was fighting cancer," he said.

Six weeks of radiation -- 31 days to be exact -- have left Scott with what he describes as a "wooden neck," no taste buds and a sore throat that makes swallowing anything firmer than an avocado a living hell. But he hoped his story might shed light on what lies ahead for Douglas and perhaps help prepare other throat cancer survivors.

"Tongue and throat cancers are very tricky," he said. "They have a very high rate of cure if caught early, however the after-effects of the treatment are quite long-lasting and rather extensive."

Douglas went public with his prognosis just this week in an appearance on "Late Night with David Letterman": stage 4 throat cancer with an 80 percent survival rate.

Scott's prognosis is better than the actor's -- over 90 percent-- but Douglas will endure the same radiation regimen, followed by chemotherapy.

"I have worked eight hours a day through the six weeks of radiation treatments," said Scott. "So it can be done without bringing your life to a standstill."

Head and neck cancers account for approximately 3 to 5 percent of all cancers in the United States, according to the National Cancer Institute.. There were 12,660 new cases of pharyngeal cancers in 2010, the kind both Douglas and Scott have; 2,410 of those people die annually.

Risk factors include tobacco and alcohol use, which may be related to Douglas' cancer, and the human papilloma virus (HPV), which is the cause of Scott's disease.

At first, doctors agreed with Scott that the lump he found might be due to allergies. After a course of medicine and antibiotics, Scott's lymph node swelling went away. But when it came back, his ear nose and throat specialist noted, "That really shouldn't be there."

For six weeks, specialists stuck him with biopsy needles, took x-rays and MRIs, and determined he had stage 3 cancer, but they didn't know where.

"The doctor was finally able to feel it with his finger and it was about the size of a pea," said Scott. "It wasn't even visible with a picture and the camera."

Oncologists have three options for treating throat cancer: surgery, radiation and chemotherapy, "but they all have bad consequences," said Scott.

Throat Cancer Surgery Can Damage Voice

Surgery was almost immediately ruled out because of the potential damage it can cause to speech or the swallowing mechanism.

"I really didn't see this coming at all," said Scott, a divorced father and grandfather who had never been sick. "I felt stuck."

But he embarked on an education process, going online to do research and eventually choosing treatment at the University of California, San Francisco Comprehensive Cancer Center, instead of a local hospital.

There, and at other major cancer centers, a whole team of specialists -- oncologists, radiologists and even nutritionists -- recommend treatment by committee.

The first positive piece of news came when a young radiologist told Scott HPV throat cancer has a 95 percent cure rate. "Wow," he thought. "We had confidence in her immediately."

The team recommended radiation, then chemotherapy, but Scott feared he would be "overmedicated," and also worried about chemotherapy's side effects, including possible permanent hearing loss.

When doctors tested his hearing, they realized that a rocket blast Scott had survived while serving in the military in Vietnam had left him more vulnerable to deafness.

So Scott decided the cure would be worse than the illness and declined chemotherapy, which doctors said would only add 2 to 3 percent to his already good survival chances.

"If it doesn't work out, I can still go back and have chemo," he said.

Even the radiation alone was punishing. By the fifth or sixth week, 60 percent of patients are forced to rely on feeding tubes because the throat is too painful to swallow, according to Scott.

"You get to point where you lose 10-15 percent of your body weight," he said.

That wasn't the case with Scott, but the six-foot-tall man lost 11 pounds in treatment, weighing in at 149 today.

"I look like a scarecrow and my trousers are a little roomy right now," he said.

Every day, Monday to Friday, at 4:30, Scott arrived at the hospital for his treatments.

"They put you in this plastic mesh thing that is form-fitted from the neck to the tips of your shoulders and they actually screw you down to the table," he said. "It's so tight, when you get off there are waffle marks on your face."

The hardest part is sitting in the waiting room and watching patients who are further along in the treatment regimen.

"You see all these other people with throat and neck cancer and you can tell right away they are scorched from the radiation," said Scott. "It's not like a sunburn, but a dark, red color … and you think, 'Oh, sh**t.' And I was only at week 1."

The radiation blast itself is painless, but the side-effects are not.

Lasting side-effects include jaw and dental problems, according to Scott, because radiation permanently disrupts blood flow to the face.

"I cannot have any more extractions of my teeth and there is a potential for the jaw to break," he said. "And there is the whole problem of healing because there is no blood circulation."

He will never be able to spend time in the sun again without covering up, and will forever be at increased risk for skin cancer.

Scott also lost the saliva glands on the right side of his face and, as a result, has permanent "dry mouth," though the glands on his left side are "working overtime," occasionally making him dribble.

Throat Cancer Can be Beat

One of the harshest side effects -- though it is temporary -- has been a raw throat.

"You can't eat anything with the slightest bit of acid," he said. "Swallowing a tomato or drinking orange juice sets my throat on fire."

Most of his diet is liquid and the blender, he says, "is my best friend."

Scott pulverizes clam chowder, but it takes him 40 minutes to swallow it down a throat that feels as narrow as a pea.

Canker sores fill his mouth, and Scott's sense of taste is also distorted.

Lettuce is horrid and chocolate goes down like wax, he laughed. "But mushroom soup tastes just like mushroom soup."

"Some guys say that the reason doctors call for six weeks of radiation is they determined the body can't take it anymore," said Scott. "I was close to that myself."

Part of the reason that Scott says he was able to survive treatment was that he continued to work, never missing a day, though he admits to sneaking in an occasional nap.

Adding to Scott's misery are the medical bills, which have been piling up.

Medicare and supplemental insurance only cover part of his treatment. One PET scan bill alone was for $6,000.

"I got a letter the other day basically saying I had a $100,000 lifetime limit and I was spending it pretty quickly," he said. "That's how people lose their houses."

But the good news is that Scott's doctors tell him that if the cancer doesn't come back in two years, it likely never will.

From the start, like Douglas, he has been optimistic. "I can beat this," said Scott.

Scott is confident, but unnerved by the little things that have changed his life.

"I even lost a little hair around the back and it looks like a really bad haircut," he said. "But my chin is as smooth as a baby's butt right now. There'll be no more beards. I've got shaving down to 30 seconds."

But it has been a sense of vulnerability that has been the biggest emotional challenge.

"I have to admit, I feel a little like damaged goods and that is kind of a bummer," said Scott. "When you date someone, you have to disclose those things like cancer early on and that could be where a lot of people walk away."

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