Squamus Cell Carcinoma - Tonsil

My Story
Doug K.
It all began with a slight bump on the left side of my neck, in March of 2001. I had mentioned it to my general practice physician on a visit for my recurrent bronchitis, and he had dismissed it as being related to my chest infection. When, about a month later, it had not disappeared, I returned. After a quick recheck, he referred me to the otolaryngologist at the practice in the next office. Examination yielded no further clues as to the nature of the bump. A thin needle biopsy at the hospital followed. One thing I remember was the deep sense of foreboding I had as the doctor conducted the biopsy, as if everything I knew was going to change. About a week later, the thunderclap announcement: “It’s malignant—we’ll do an operation where we will take out your left jugular vein, your left stern-cleito-mastoid muscle, and a lot of lymph nodes.” This was delivered with a sense of happy anticipation of a really complicated operation that would be good practice. Stunned, I decided immediately that she was not coming anywhere near me with a knife. I managed to call my wife, and croaked something to the effect that the news was not good. Amazingly, in hindsight, I went back to work for the rest of the afternoon. This was a Tuesday; in early May of 2001 (I did not keep a diary, so I’m working from memory here.)
The one time I cried about the situation was that afternoon when I got home. The weight of all the unknowns—how bad was this, what effect would it have on my family, my career prospects if I survived in a limited state, all combined to crash in on me, and I caved in to them when my wife, came out to the garage when she heard me drive in. I can’t remember when or exactly what I told my four kids, aged four to thirteen, about my situation….I eventually pulled myself together…
The best antidote to fear is action—I had an appointment with a radiation oncologist that Friday and focused on that. Somehow I managed to get through the rest of the week at work. Actually, I enjoyed being there, and managed to forget, at least temporarily, the black buzzard circling over my cubicle. I told no one at work, not knowing that much myself.
The radiation oncologist, after examining me, actually gave me some hope. He said that the lump in my neck was a secondary metastasis from an unknown primary site. Now that sounds bad, of course, but his manner was reassuring in that he had seen and treated cases like mine before. True, most of them were in their fifties (I was forty-five at the time) and, as he put it, tended to have “a lot of mileage on them” with their typical habits of smoking and drinking. It was odd, he said, that I had gotten the cancer, though I never smoked and only drank beer or wine very occasionally. The downside of getting radiation, he explained, was the fact that your salivary glands would get blasted, and no longer produce saliva. You would, he explained, just have to keep a bottle of water handy at all times. This sounded as bad as the operation my otolaryngologist had proposed, but nevertheless, it was progress. There was a way forward. The challenge was how to best chart a course through all the options coming up for consideration.
As my wife and I discussed, it became clear that I had to find a new otolaryngologist (also know as an ENT for ear, nose and throat), one that was not committed to carving me up like a Thanksgiving turkey. Let me add here a note that I would pass on to anyone facing a battle with cancer—you have to be your own advocate. You cannot meekly accept whatever the first medical provider tells you. You’ve got to fight against the paralysis of will that may overtake you and study, search, talk, get as many sources as you can…OK, sermon over…where and how was I to begin?
One partial answer was offered by my sister, who had been reporting on the medical field for years. She located a practice that appeared to specialize in head and neck cancer, and we set up an appointment. In the meantime, it was on to more tests that had been ordered by my current ENT. The first was the customary CAT scan of the head, neck and chest. There is a concern in cases like mine, that the cancer has metastasis zed to the lungs, in which case, as the radiation oncologist put it, get your affairs in order, you’re going to die, it’s just a matter of when. After the CAT scan, I was scheduled for a Positron Emission Tomography (PET) scan. This is a test in which you are injected with a radioactive tracer to see where the areas of high biological activity are located. It took several weeks to arrange the appointments and have the tests.
Armed with the scan results, we went to see Dr. Mesick. He was, like the radiation oncologist, very reassuring in that he had a lot of experience with this sort of thing; more experience, it was evident, than my previous ENT had had. It felt good to see him throw the scans up on the X-ray backlight apparatus, and discuss my condition and prospects together with his colleagues with what I felt was a certain professional élan. The good news from the PET scan was that it only showed high activity in the area that we already knew about, the lump on the left side of my neck. Similarly, the CAT scan showed that there were no additional suspicious lumps. We discussed the next steps after he had examined me. Of prime importance was the need to discover the primary site, in order to be able to direct the radiation as precisely as possible. If not discovered, the radiation would be directed at the entire throat area, which would kill my salivary glands, which would have all sorts of negative consequences.
So, it was on to the operation that would determine how the rest of my life would go—after another week or so delay. Dr. M. sampled various areas in my mouth and throat using a topical anesthetic, carefully mapping each sample to the location from where he had taken it. Another visit, after a week to examine the tissues. Good news—he had located the primary site. It was where my tonsils had been removed in my fourth year, the left side, to be exact. It had been invisible; in fact, Dr. M. opined that he might well have removed it while performing the sample. This was great—now we could focus the radiation precisely where it needed to go. Talking with Dr. M., we agreed that the next step would be a course of radiation therapy, but which doctor, and where? The radiation oncologist we had seen previously was down in Fairfax, a long way away, and in any event, he had seemed somewhat cavalier about the issue of maintaining my salivary glands. My sweet wife provided the next answer—a radiation oncologist located right near our home in Sterling, about five minutes away. We set up an appointment with Dr. A at the local cancer center.
Yes, announced Dr. A after he had examined me, looked at the various reports and studies, he thought he could save my salivary glands, due to the state-of-the-art equipment the center had just obtained. It would take eight weeks of five treatments a week, and would I want to talk to Dr. Mr, the medical oncologist, about chemotherapy? This was something I had not known about or considered, but in talking with Dr. Mr, he told me that there were a number of things he could do for me. First, the “cocktail” of two fairly mild chemo drugs would make the cancer cells more susceptible to getting zapped, and would help, possibly, clean up any stray cells that had floated to other parts of my body to lodge and start growing. Second, he could give me Amifostine to help guard my salivary glands against the inevitable damage they would sustain in spite of all Dr. A’s efforts to spare them. What would be side effects, I asked. Dr. Mr said that I could expect decreased appetite, possibly hair loss, and some weakness. This sounded fairly mild, and when you are in the thick of the battle, you tend to want to apply every weapon at hand to beat this thing that threatens your existence. So we added the chemotherapy to the treatment plan.
We got started later that week. Dr. A needed X-rays, which he took, and asked for the CAT scans so he could start to calculate the beam angles. Once they figured all that out, Dr. A explained, they needed some way to keep your head in absolutely the same place every time. In order to do this, a brace was fashioned for me out of plastic strips with snaps that would be connected to a stand on the treatment table. A few more days of fine-tuning and figuring on the part of Dr. A and his head technician, and I was ready to start. I planned to continue working as long as I could, so I scheduled the treatments in the late morning. First stop was Dr. Mr's office. The injection of Amifostine was trivial, with no effects that I could tell. The chemo mixture was fed in via a drip over the course of an hour or so—I can’t recall feeling any effects that first treatment. On to the radiation! I was ushered into a low-lit room with a massive radiation machine squatting in the middle, waiting for me. The technicians cheerfully strapped me in—just my head, so theoretically, I could have, I suppose, ripped off the head restraint, and run from the room, if I was so inclined. The actual radiation only took about 15 minutes. Just a slight tingling on the skin, some very mild warmth, as the massive business end of the beam “gun” moved through its programmed positions.
And so I started a routine that lasted for about three weeks. My first treatment was on June 28th. I would go to work in the morning, after eating a light lunch, leave for Dr. A's office about 11:00, get treated, and come on back to work. Over this period, my appetite steadily decreased. The first thing to go utterly was coffee. I had been a two-cup-a-day man, but soon I just did not have the stomach for it, starting a couple of days into treatment. I started eating less and less—can’t explain how it happened, but I just did not want to eat. Another aspect that decreased my desire for food was the vomiting, which led me to request leave from work when I had to bolt from a meeting that was just starting up in order to “hurl.” My weight, of course, steadily dropped from my pre-treatment weight of 204 (at my lowest I would hit 155.) It was not a pleasant-looking weight loss either—I became a scarecrow-like caricature of my former self. My wife insisted that we go to a nutritionist, but I knew it would do no good. The one thing that worked to get calories into me was a technique I developed of chugging the chocolate Ensure, which we bought by the case.
The end of the treatment approached. I would spend most days resting and reading, mostly the Bible and various inspirational literary pieces. As before, I had no sense of God’s nearness, but several Scriptures became startlingly clear to me: Psalms 119:67 “Before I was afflicted, I went astray: but now have I kept thy word.” Was this part of God’s affliction to help me stay on the straight and narrow path? I did not delve too deeply into this, but determined that if this was the course He had mapped out for me, I would walk it. Several times we had visitors from church, which I greatly appreciated—the pastor and an elder who served Communion to me. A group of guys from my church circle came also. I could tell everyone had that male aversion to being in the presence of serious illness, but they came anyway. There was, for a time, a tide of dinners brought by our church friends, such that the kids would groan at the thought of yet another casserole.
At any rate, my last treatment drew near. I had a rather scary incident at Dr. Mr’s office when my body developed a sudden allergic reaction to the chemo mixture. My heart started racing, goose-bumps and a prickly electric feeling all over, shallow rapid breathing—the nurses came running, stopped the drip and gave me a walloping dose of Benadryl. I calmed down after a few minutes and after assuring me that they would take it slowly, the nurses restarted the drip successfully.
I had been expecting my hair to start falling out, but this did not happen; however, a small, semi-circular patch of hair on the left side of my head, in reaction to the radiation went bald (it has since mostly grown back.) Another effect worth noting was that, due to the Amifostine, my saliva production went crazy, and I tended to need to spit quite often. The burns in my mouth from the radiation started to really hurt, and to ease the pain, I developed the habit of putting straight Lidocaine on the burned area. My voice, again due to the radiation, grew very weak and reedy. I developed white spots on the inside of my mouth, due to the radiation and chemo combination.
Finally the last week of treatment—I was crushed to hear Dr. A say that, because I had missed a treatment or two, I had to have a couple of “make-up” radiation treatments. At this point my mouth sores were raging, but being the good patient that I am, I submitted to the two extra sessions.
Finally no more treatments! Many patients simply cannot take the full course for one reason or another, but I had been able to do it. I rested at home. Dr. Mr had told me to keep a close eye on my temperature, and that if it went up, I was to notify him immediately. A few days after the last treatment, my temperature spiked. My wife was at out shopping with the kids, and I panicked—what I thought was going to happen in a couple of hours, I could not tell you now, but I knew I wanted to get to the hospital as quickly as possible. I called Dr. Mr, who told me that he would meet me at the hospital to admit me if needed. As Chris was out, and I did not trust myself to drive, I called a neighbor, who kindly drove me to Loudoun Hospital Center. Dr. Mr examined me and wrote orders for my admission with a diagnosis of pneumonia. So began a difficult ten days. I was put on an IV drip of some powerful antibiotics, along with pain killer that I could activate with a button-click. What made things even more difficult was the fact that, before I had been diagnosed, we had put down a contract with a builder for a new house, and our current house was not selling. I would lie in that hospital bed and just break into a cold sweat worrying about it.
Ten days in the hospital, and then it was back home. Dr. Mr had ordered a home visit nursing to help me with the IV which was still in my arm and attached to a stand on rollers which I could push around. I felt like a ghost wandering around upstairs hanging on to that roller stand. In addition to the nurse visits, we would have people coming through looking at the house, which was still on the market. It was a tad awkward at times, with me skinny and birdlike with my IV stand, coming down to let people in if my wife was not home,
The last hurdle to cross, as least in my mind, was the fact that the lump in my neck was still there, although somewhat smaller. I wanted that out, one way or another. My wife and I felt that Dr. M would carve me up pretty badly in order to do that. Dr. A in fact urged me not to do anything, assuring me that the cancer cells were history. I wish I had listened, but at least he convinced me that we needed to find a doctor that would not do the full radical neck dissection that my first ENT had wanted to do. Once again, my sister came in and offered some help. She located one the premier surgical oncologists in the area specializing in head and neck cancer. We set up an appointment and went in to consult with him to determine if I needed the surgery. After the usual examination and looking at my CAT scans, he told us that it was basically up to me. Asking him if there was any way we could tell if the cancer was still active, he said, no, the only way was to go in and take it out. I asked about getting a thin needle biopsy, whereupon he replied that this could be done. Then, grasping at straws (I guess I really wanted that operation), I asked if there was any chance of getting a false positive. When he said that this was possible, I said that I wanted to get the remaining tumor, but could he just go in and get the tumor out and skip all the lymph node dissection? I thought I had sent this message, but did not probe him to find out exactly what the operation would entail. I wish I had, because the effects of the surgery would be far greater than I had anticipated.
The surgery was set to the first week in October, 2001. In the meantime, we had moved to our new home in Leesburg, which was a real trial with me still very weak. A full six weeks after end of treatment, and I was still vomiting sometimes after eating, although my appetite was returning and I was generally OK with soups and such.
I went in for the surgery on October 8. It lasted about three hours, and in contrast to what I thought would be a small scar of perhaps two inches turned out to be cut from my throat to behind my left ear, with a voluminous amount of tissue removed. In addition, two plastic tubes were inserted in my neck with suction bulbs to help drain out the fluid which would tend to accumulate after the operation. The tumor had wrapped itself around my left jugular vein; the surgeon therefore had to remove the vein. He was skillful, thankfully, enough to save the descending scapular nerve which controls the trapezius muscle of the shoulder. Had that been cut, I would have had what is known as “slope-shoulder” and not been able to raise my left arm. I was in the hospital two nights, and discharged home. I was not a pretty sight, with two tubes in my neck which would remain for another week. I had to pump the bulbs every once in a while to get the fluid out and dump it—very messy. At my return visit to see the surgeon, he told me the good news: all clear with the tissue that had been removed. That meant that I had not required the surgery from the standpoint of removing the tumor to get rid of any active cancer cells. Still, it meant that I had apparently gotten through to the end of it.
After four more weeks of recovery I went back to work, which my primary care could not believe when I told him later. My neck was a mess, and one could tell I had had a serious operation; when looking at me head-on, it was clear that the left side of my neck angled in from the shoulder, and that there had been a lot of tissue removed. Still, at this point I was grateful that I had been able to navigate through the various minefields of the treatment options and that I had done everything I could to beat this thing. It was not until later that I started to become very self-conscious of my appearance. In those early months back at work, I would, in spite of my best efforts, fall asleep at my desk or at lectures, but was only caught by a co-worker once.
About six months after the end of treatment, I started noticing that, in spite of the fact that my appetite had returned and I was overall getting stronger, I just was not able to do much work in the yard or around the house. A trip in to see my primary care physician and a blood check showed that my thyroid had apparently been affected by the radiation and was only putting out half of the half the required hormone. This was fixed with Levothyroxin, a pretty common drug used to treat low thyroid conditions (I’m on this for the rest of my life.) One other thing that helped my appearance somewhat was using Moderma cream on the scar to help shrink it.
A few years went by and I continued to recover, but as I recovered, I wanted more and more to not have that deformed appearance to my neck. I checked into the various things that could be done. There were several options. One, the most radical, was called a free-flap transfer that involved taking a piece of my stomach fat and dissecting down through the stomach muscle to get the blood vessels, and placing the result in my neck deficit. This involved three days in the hospital and also re-cutting through the scar tissue from the original incision. This seemed to be too much to take on, and my wife was against this option. The option I settled on was fat injection, where fat is taken from your middle, and injected into the site. I had this done in January of 2006, with a follow-up operation in May to help fill in the low spots.
And so this brings us to the present. The difficulties I am presently dealing with are, of course, the appearance issues, although greatly decreased after the fat injection, and some muscle tension issues in my neck due to the residual weakness of the muscles on my left neck and shoulder area. More than five years since the end of treatment, my ENT doctor said, in his words, “I think we have a cure.” The whole episode is fading into the past both in my memory and that of my family’s. My reasons for writing down my story are to get a record of my experience before it fades away even more, and that it may in some way help others who are faced with a similar challenge. If I may sum up the lessons I would like to pass on, they would be as follows:
1. As I said before, be your own advocate. Do not worry about hurting anyone’s feelings if you do not take their advice. This is your life, not theirs.
2. Know your enemy. Study up on the nature of the disease you may have and the various treatments (and side-effects) available.
3. Communicate with your medical providers. Make sure you tell them your wishes, and take pains to understand exactly what they plan to do.
4. Keep your spirit fed. Obviously, I’m a Christian, and as such would urge all to read the Bible and seek God in your time of need.
With my best wishes,
Doug K.