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My neck cancer scare

On December 30, 2004 while taking a shower and washing my neck I noticed a large lump about the size of a golf ball.  How it got that big without me noticing it I’ll never know. One reason it that I was shaving in the steam shower with a small mirror and couldn’t see my neck that well.

I’m retired navy and called the Naval Hospital about a half hour later and they got me in that same day.  I was able to get a CT scan that same day also but the scan ricocheted off my dental crowns and was inaccurate.  The doctor referred me to the ear, nose and throat department.

It took about three weeks to get an appointment with Ear, Nose and Throat.  The doctor took one look at my mouth and said I had cancer of the tonsil that had spread to the lymph nodes in my neck. They took a biopsy of the lymph node and it came back positive.  He also ordered referral for oncology, dental, a nationalist and radiology and he ordered a MRI. He recommended radiation and surgery.  He briefed me on the side effects that radiation would cause including losing my saliva glands for the rest of my life. He got in to a lot of detail about it.  He said they couldn’t force the radiation on me but if I were his relative he would strongly recommend it.  The problem with radiation is that it fries your pituitary gland which is responsible for a lot of important hormones so you're constantly going to be fatigued, it fries your saliva glands so you are constantly going to have a really annoying dry mouth and it fries your taste buds so everything is going to taste like cardboard.  I didn't want to live like that.

When I saw dental, I told him that I was going to refuse radiation and if the cancer came back, I’d just let nature do its thing.  The dentist then got into more detail about how they would have to pull all my teeth if I elected radiation and that I could have dental implants afterward but I’d have a lot of trouble with the implants because the radiation damaged or destroyed the jaw bone.  He said that the doctors would have a board meeting to decide what to do with me and that he’d make his recommendation at that board meeting.

I saw oncology and was examined by a female intern first.  She was a real bitch.  When I told her about letting nature do its thing by refusing radiation she basically said I was a goner if I refused it. Then the doctor came in and said that my chance of five year survival was only 30% with surgery and radiation.  I’m still pissed off at the intern and if I make it, I plan to write her a hate letter.  The following article only have me 25% chance.  See:

The board met and approved my surgery.  I met with the surgeon, a lieutenant commander, and he said that if they got in there and found that it was extensive, they might have to remove a lot of my throat but they might be able to take flesh from my chest and transplant it to my throat.  I signed the paperwork approving that.  They said the surgery would take about seven or eight hours and so they scheduled me for the entire day about three weeks later.  The lymph node tumor was in a difficult place to operate on.  He also said that for the tumor to be that big, it had to involve more than one lymph node, which turned out not t be the case.  The tumor was so big that it was pressing against a bone.  They kept gagging me checking to see if it was attached to the bone with their fingers down my throat.  Lucky for me it turn out not to be attached to the bone.

The doctor from radiology called me after the board meeting and tried to sell me on radiation again.  He said that by doing the radiation after the surgery instead of before, if the surgery was successful they might be able to do radiation at a lower dose and save my saliva glands.  I still refused it.

The original surgeons consisted of a young rookie and the most experienced ENT surgeon there.  I could tell that the experienced one new his stuff when I had a long preop session which was uncomfortable because he kept gagging me trying to figure out whether the tumor was attached to the bone.  About five days after that the rookie called me.  He said that another patient who didn't have a terminal cancer problem wanted to swap surgeons.  That patient had the rookie and the department head.  The problem with the department head was just that, he was doing department head stuff and had been away from frequent surgery for a long time.  I didn't like that but figured I was a goner anyway and agreed.  The day of the surgery there was a third surgeon that looked old enough to have Alzheimer's.  They had to page the department head because he was off doing department head stuff so you had to wonder where his thought of mind was.  I thought what else could go wrong but I'll get the the collapsed lung.

The surgery was on 2/8/05.  Debbie, an ex-girlfriend, took me to the hospital the day of the surgery. I had to be there around 7 AM.  I changed to the hospital gown and went to the waiting room with Debbie.  There were about 30 people there including their drivers waiting for surgery.  I thought it was going to be a long wait but I don’t think I even got a chance to find a seat and they called my name.

They hooked up the IV.  I talked with the anesthesiologist and some other surgeon that looked senior to the navy captain who was going to be in on the surgery also.  So I think I had three surgeons.  The navy captain/department head came in.  He didn’t like the idea of taking flesh from my chest.  He said if the cancer was that extensive, they would wake me and discuss my options including radiation and then maybe schedule a second surgery.  I didn’t feel like arguing with him about the radiation at the time.  I was too worried about what kind of disfigurement I’d wake up to.  Click here to see how Roger Ebert appears as a result of his surgery.

The surgery took seven or eight hours like he said.  They scoped me out, whatever that means.  They removed both tonsils.  Then they cut from the back of my ear all the way down to my collar bone and then across to my Adams apple and removed 18 lymph nodes.  When they were done, the lieutenant commander went to the waiting room to talk to Debbie.  He took her into a room and shut the door. He told her that the surgery went well.  Then he said he didn’t know what her relationship with me was and he shouldn't be telling her this but it was really serious and that she needed to talk me into getting radiation.  Debbie told him she would try but I wasn’t someone that let people talk me into anything.  A later biopsy showed that the cancer was confined to the tonsil and just one lymph node.  The lymph node was a stage III.  Stage IV usually means it's inoperable so I must have found it just in time.

I woke up with severe pain in my right chest.  Debbie talked to me for about 10 minutes.  She mentioned the radiation thing but I told her I wasn’t going to do it and that I was really in pain and didn’t feel like talking then.   She never pushed the radiation again.  She mentioned a couple days later that as she was leaving she heard a nurse comment about the huge size of the incision.

I was in severe pain all night.  They gave me morphine but that didn’t seem to do anything.  Vicodin worked better.  I kept complaining about the pain in my chest.  A corpsman brought in a portable EKG machine and completed that.  It didn't show anything abnormal.

The doctor came in the next day.  I told him there was something seriously wrong with my chest, maybe it was a broken rib.  He said it wasn’t very likely but ordered an x-ray.

About two hours after the x-ray, three doctors came in.  They said I had a collapsed lung.  One was a commander and they were training him, which I thought was odd.   I call them the three stooges because of the way they acted. They seemed to be in a real hurry and kept having to go out into the lobby for a conference.

They hit me with a local and talked the trainee into putting a tube into my lung cavity.  They acted like it was a race to get it done.  That was really painful.  They sucked a lot of air out.  Then they left some kind of suction device on and said they’d have to leave it there for 24 hours.  I told them they went too far with that tube and I could feel it pressing against my lung plus there was no way I could tolerate that for 24 hours.  They had another conference and came back and had the trainee pull the tube out a little.  They said they could increase the morphine and if I still couldn’t tolerate it, to have the nurse take it out.

They also gave me oxygen.  I had a suction tube in the left side of my neck to prevent fluid buildup, a suction tube in the right side of my chest to remove air from the lung cavity, my throat was swollen so I could only breathe through my mouth in certain positions and couldn't breathe through my nose at all, I was constantly sweating from a fever, the pain from the collapsed lung wasn't going away even though they removed some air plus I hadn’t slept in two days, which was really getting to me.  The oxygen mask just added to the annoyance so I took it out every time the nurse left. They caught me a couple times and I told them I just took it off for a second.  In the middle of the night a nurse caught me for about the third time without the oxygen and didn’t buy my story anymore.  She offered to replace the oxygen mask with some tubes to my nose. I agreed but didn’t tell her that I couldn’t breathe through my nose anyway.

The next day, the oncoming nurse found out about the oxygen tubes to my nose and new that I couldn’t breathe through my nose and had a fit and put the oxygen mask back on.  I still took it off whenever they weren’t around and got caught and chewed out a couple more times.

I managed to tolerate the tube in my chest for 24 hours.  The three stooges finally took it out but said I had to stay on oxygen so I had to play that game for another two days.

The second day they let me go to the bathroom instead of pissing in the bottle.  I looked in the mirror at the incision for the first time and couldn’t believe how bad it looked.  Like I said it was from the back of my ear to my collar bone and across to my Adams apple.  Plus the way the staples pulled it together it was all red and looked like two huge worms stuck together.  I thought then that my new nickname would be scar face.  Several months later it healed really well and there are barely noticeable lines there now.

I didn’t sleep for about the first three days in the hospital.  They finally found it in their heart to give me one valium and I practically had to beg for that.  That helped and I was able to get to sleep but the only way I could sleep and breathe at the same time was if I was sitting up part way and lying on one side with my head in one specific position.  That continued even when I got out of the hospital for about two weeks.

I ran up a fever of about 103 degrees.  They were talking for a while that they might have to use ice packs to bring my temperature down.  They did the surgery on a Tuesday and I wasn’t released until that Saturday because of the fever.  That Friday night my temperature was still high but  luckily just before the corpsman came in on Saturday morning to take my temperature I had just drank a glass of ice water and my temperature was down just enough that the doctor approved the release.  They said if the fever came back to return to the hospital immediately. It came back when I got home but I wasn’t going back to the hospital again.

When they removed the staples, I told them I was still having a high fever so they gave me another bottle of antibiotics, which I never took.  I already took one bottle plus they had been giving me antibiotics via IV in the hospital and I thought it was overkill.

For two weeks I had to sleep in that weird position and I was soaked with sweat every night from the fever.  I had to change my t-shirt and briefs about two or three times a night to keep dry and cut down on the chills.  I lost about ten pounds in about ten days.  I realize that a pound of fat is about 3,600 calories and you only burn about half that per day so it must have been water loss but even after the fever broke, I maintained that weight for about four months.  The only explanation I have is that maybe as the water weight started coming back, I was continuing to loose weight.

I kept thinking that after all that, if the oncology doctors were correct about refusing radiation, my chance of survival was slim to none.  Maybe 10% if I was lucky.  I wondered that if there was a minimum probability that surgery would solve the problem before they could approve the surgery and whether doctors sometimes had to fudge the numbers to give people a shot at life.  Statistically, the surgery only raised my chances of survival from 0% to 10%.  Put a different way, if you were to play Russian roulette with five bullets, your odds would be 16.7%.  That's 67% better odds.

I started taking every thing in the book for cancer, co-enzyme Q10, calcium d-glucarate, IP-6, green tea, etc.

I had to see the doctor once per month for the first year, then every two months for the second year and every three months for the third year. The doctor I saw was like an assistant doctor. He didn’t do surgery.  I was sweating out those visits big time for the first 15 months.

Ten months after the surgery, the doctor noticed something suspicious on my throat. My heart was beating about 300 beats per second and I thought that was going to be it. He had the original doctor I saw, a surgeon, look at it. They told me to come back in three weeks, so I had to sweat that out over the Christmas holiday season.  It was still there in three weeks.  They checked it every month after that and it didn’t change.  Finally they ordered another MRI and CT scan.

I made an appointment with the assistant doctor to get the MRI and CT results.  Instead of the normal room, they put me in a room that had one of those machines that has a back light to read x-rays.  There was one x-ray clipped on the machine.  I didn't know if that was mine or not.  Then, on top of that, instead of the assistant doctor, the surgeon came in.  I thought they sent him to break the bad news to me and discuss my options, if any.  If they were trying to set things up to scare the crap out of me, they could not have done a  better job.  My heart was going about 300 beats again.  He asked how I was and I said fine and got right to the point and asked if there was a problem with my MRI.  He said he was the doctor in charge of my case and was just checking on me and didn’t even know about the MRI.  Then the assistant doctor came in.  He looked up the MRI and CT in the computer and said the results were fine.  That was probably the turning point of when I stopped sweating out the checkups.

It’s been almost four years now and I’m still cancer free.  The suspicious thing on my throat is still there but it isn’t changing and they aren’t worried about it anymore.  The assistant doctor said sometimes they can pop it but they never did.

I feel guilty about the cancer survival label.  Everything that happened to me is water over the dam.  I consider cancer survivors as the ones still suffering from the side effects of chemo and radiation, disabilities and/or deformities.  I don't have any of that.  I doubt if anyone notices the line on my neck.

Regarding those surgeons that I criticized for being too new or too worried about their other duties or being old enough to have Alzheimer's, those fuckers must have had their shit together in that seven or eight hour surgery to save me with odds like that.  I can't thank them enough.  I wanted to illustrate how bleak it appeared to me at the time.

85% of head and neck cancers are due to smoking.  I’ve never smoked and with all the supplements I take I felt that I should not have gotten the cancer.  Several years ago there was some anti-aging doctor in San Diego that was taking growth hormone that got brain cancer and I thought it was too much of a coincidence so I blamed it on the growth hormone.  Then I was reading that 50% of non-smokers that get head and neck cancer have the HPV virus so maybe that was it.  Now I think that everyone, including men, should have the HPV vaccine.  See:

  • Low Prevalence Of HPV Infection May Be Tied To Poor Prognosis For Blacks With Head And Neck Cancer - Science Daily, 7/29/09 - "Only 4 percent of black patients with squamous cell carcinoma in the study were HPV-positive, compared with 34 percent of white patients. The median overall survival was more than three-fold higher for whites (70.6 months) than for blacks (20.9 months) who were treated with chemotherapy and radiation. Dr. Cullen says the survival rate at five years for HPV-positive patients was about 85 percent, compared to 35 percent for HPV-negative patients. Survival was similar for HPV-negative patients, regardless of race. The study's findings confirm that HPV infection relates specifically to a type of head and neck cancer -- cancer of the oropharynx, which include the tonsils, soft palate and base of the tongue ... Overall, about 25 percent of head and neck cancers are tied to HPV infection"
  • Sharp Increase In HPV-positive Tonsil Cancer Found - Science Daily, 4/2/09 - "Because the tumours produce so few symptoms, patients seek medical care when the disease is relatively advanced, often after the tumours have spread to the lymph glands of the throat, possibly making the prognosis much worse ... More recent studies, however, have demonstrated a link between HPV and tonsil cancer, so that today an HPV infection is also one of the established risk factors ... Since 1970, the cumulative incidence of HPV-positive tonsil cancer has increased from 23 to 93 per cent"
  • ABC News: The Oral Sex Cancer Connection -  ABC News, 10/15/08 - "These are patients that are young. They are in their 30s and 40s. They are nonsmokers, and they don't drink alcohol ex ... There is absolutely a link between oral sex and oral cancer" - Click here for the 7 minute video.  I says that boys may want to get the HPV vaccine.
  • HPV-related oral cancers rise among younger men - baltimoresun.com, 4/14/08 - "They're men in their 40s, and even 30s, whose cancer is brought on by the increasingly common human papillomavirus (HPV) ... researchers now believe that the increase in certain oral cancers can be traced to the spread of the virus through oral sex ... New studies suggest that HPV-related oral cancer cases are on pace to eventually surpass cases of cervical cancer in the United States ... many doctors do not realize that they should be on the lookout for oral cancer in younger patients ... The public is unaware of this"
  • Incidence trends for human papillomavirus-related and -unrelated oral squamous cell carcinomas in the United States - J Clin Oncol. 2008 Feb 1;26(4):612-9 - "oral squamous cell carcinomas (OSCCs) ... Life-table analyses were used to compare 2-year overall survival for HPV-related and HPV-unrelated OSCCs. RESULTS: HPV-related OSCCs were diagnosed at younger ages than HPV-unrelated OSCCs (mean ages at diagnosis, 61.0 and 63.8 years, respectively; P < .001). Incidence increased significantly for HPV-related OSCC from 1973 to 2004 (annual percentage change [APC] = 0.80; P < .001), particularly among white men and at younger ages. By contrast, incidence for HPV-unrelated OSCC was stable through 1982 (APC = 0.82; P = .186) and declined significantly during 1983 to 2004 (APC = -1.85; P < .001). When treated with radiation, improvements in 2-year survival across calendar periods were more pronounced for HPV-related OSCCs (absolute increase in survival from 1973 through 1982 to 1993 through 2004 for localized, regional, and distant stages = 9.9%, 23.1%, and 18.6%, respectively) than HPV-unrelated OSCCs (5.6%, 3.1%, and 9.9%, respectively). During 1993 to 2004, for all stages treated with radiation, patients with HPV-related OSCCs had significantly higher survival rates than those with HPV-unrelated OSCCs"
  • Oral sex-related cancer at 30-year high - New Scientist, 2/28/08 - "The incidence of oral cancer due to a virus transmitted during oral sex has increased steeply over the last 30 years ... The rise was largest among young white males, suggesting this group is more likely to have oral sex at a younger age now than it was 20 years ago ... What is not in doubt, says Gillison, is the need to consider giving boys the HPV vaccine, to protect them from the disease ... These strains are also thought to cause oral cancer, as well as penile and anal cancer"
  • HPV-Related Oral Cancers on the Rise in Men - oncologystat.com, 2/2/08 - "The virus usually associated with cervical cancer has been linked to oral cancer in men, and is responsible for as many cases of the disease as tobacco and alcohol"
  • Human Papillomavirus in Cervical and Head-and-Neck Cancer - Medscape, 12/17/07 - "mounting epidemiological, molecular and clinical evidence indicates that high-risk HPVs (especially HPV.16) account for the development of headand-neck carcinoma in some individuals who do not have the classical risk factors for this disease (i.e. a history of tobacco use and/or alcohol consumption)"
  • Loud and clear on oral cancer - USATODAY.com, 11/25/07 - "The most likely culprit, he says: the same strains of human papillomavirus (HPV) that cause most cases of cervical cancer. A likely mode of transmission is oral sex"
  • Human Papilloma Virus Vaccines May Decrease Chances Of Oral Cancer - Science Daily, 8/30/07 - "oral and oropharyngeal squamous cell carcinoma (OOSCC) have been linked to high-risk HPV strains, the same strains that cause cervical cancer ... It's possible that oral and oropharyngeal cancers could be reduced if vaccination were more widespread; however, additional research is needed"
  • Oral Sex Implicated in Some Throat and Neck Cancers - washingtonpost.com, 8/27/07 - "Human papillomavirus (HPV), which is believed to be responsible for most cervical cancers, may also be at the root of many cancers of the mouth and throat ... Previous research has found that up to 50 percent of nonsmokers with throat and mouth cancers were infected with HPV"