Thyroid Cancer: My Experience
In the Fall of 2003 I was diagnosed with Thyroid (Papillary) Cancer. This event had a profound impact on my life and on the lives of my family. Cancer is a word that spreads fear and creates psychological trauma not only with the patient but also with their loved ones. I found that managing the emotions of my family to be a far greater challenge than the actual treatment and survival of this disease.
Before I talk informally about my experience I want to add a comment about Papillary Thyroid Cancer so you can know a bit more about it and get a flavor of they type of clinical language I was reading at the time:
"Papillary tumors are the most common of all thyroid cancers (>70%). Papillary carcinoma typically arises as an irregular, solid or cystic mass that arises from otherwise normal thyroid tissue. This cancer has a high cure rate with ten year survival rates for all patients with papillary thyroid cancer estimated at 80-90%. Cervical metastasis (spread to lymph nodes in the neck) are present in 50% of small tumors and in over 75% of the larger thyroid cancers. The presence of lymph node metastasis in these cervical areas causes a higher recurrence rate but not a higher mortality rate. Distant metastasis (spread) is uncommon, but lung and bone are the most common sites. Tumors that invade or extend beyond the thyroid capsule have a worsened prognosis because of a high local recurrence rate."
(The above quote can be found anywhere on the internet. The link I had previously posted is considered against the rules by Hubpages so I took it down.)
The most important thing to me with this particular diagnosis is the high survival rate. If you can read the material carefully, listen to your doctor and stay rational you can function normally throughout the process. You must not assume the word cancer means a death sentence. This is critical in my view. It is my feeling that a positive attitude works wonders. I can never prove this but I felt strong once I had the information I needed. This is a highly treatable form of cancer (I was told this was the one you want if you are ever diagnosed with cancer) and once I calmed down I believed it. The problem was that my family continued to suffer as if I had been diagnosed with pancreatic cancer. I don't blame them for their fears but I had no place in my life at the time for this. My attitude became, "Ya'll can cry but I have to manage my life."
On a Friday night in September 2003 I was looking at myself in the mirror prior to taking a shower. I had just finished jogging. Suddenly I noticed something on my neck. It was a lump, located just above my collarbone slightly to the right of center. I kept staring at it and stretching my neck around and finally admitted to myself that it was indeed a growth. I knew it was different. I can't describe adequately the chill that went into my body. I had a seven-year old son and my wife was pregnant with our second child (due in December of that year). So this was most unwelcome as you can imagine. My in-laws were visiting so I grabbed one of them and showed him the lump. He tried to downplay it but I could tell what he was thinking. Finally I told my wife and the others. Since it was not an emergency I decided to wait until Monday to go to have it checked out. So I had the weekend to stew. And of course there it was: THE INTERNET. So of course I started my research. I Googled "lump in neck" and here came the possibilities: Leukemia, Hodgkins Disease, Lymphoma etc etc etc. I became obsessed with reading all about each one. I stayed up all night. Finally my wife tried to tell me that it would be alright and that I was just scaring myself which was obviously true. I tell you this because this is what happens and you might experience the same thing. The fears are normal. But that internet can sure give you more than you want to know.
On Monday I went to my family doctor and he quickly decided to send me to an ENT doctor that he knew. I went to their office that same day. He looked at my lump and immediately set me up for a CT Scan and some blood work. I remember calling my wife and telling her "Well, the good news is they are taking it seriously. The bad news is they are taking it seriously." Two days later he did an office procedure called a needle biopsy. He said this procedure (stick a needle in the lump to sample some tissue; you are awake during this procedure) could tell you if you had cancer but it could not rule it out. In other words it could come back benign (which it did) but it could still miss the diagnosis. So I guess it was a short-cut method.
Because of this it was then decided to check me into the hospital for surgery to remove the lump (which I now knew was a swollen lymph node) for analysis and to take a look at the thyroid itself (the ENT surgeon had apparently narrowed it down in his mind to thyroid cancer). This surgery laid me up for a couple of days and required that I wear a catheter (tube sticking in my upper chest to drain blood into a disgusting reservoir which I had pinned to my shirt; my son kept asking, "What's wrong with you Daddy" when he saw that thing). After the procedure he told my family (waiting in the lobby) that it looked good. A few days later my mom and brother took me to have the catheter removed but it turned out he had the diagnosis. It was cancer. As he spoke I went into a bit of an out of body experience. I was watching his sober comments about the next step and I was thinking, "This guy is still talking. Surely this is a joke." But it wasn't. It was real. Finally I snapped back to reality and asked a few questions. The main thing was that my mom was sitting out there. I called my wife to give her the news which she took fairly well. Here is the interesting part: the ENT told me I should only tell my wife that I had cancer. I should tell everyone else it was just a malfunctioning thyroid. I was going, "Your kidding!" He said that he felt I would be cured and that there was no reason to alarm my family. He said they will take it as a death sentence and become highly emotional. At this point I started to question his judgment. It turns out he was a prophet.
So I had to do some fast thinking. I had to walk out into that lobby and tell my mom/brother that they didn't have any results back yet. I was still thinking about the doctors instructions. Apparently my face was white as a sheet according to my mom but I told them they still didn't know about the diagnosis. My mom and brother remained subdued but went with the story. At least the catheter had been removed so my story (lie?) was plausible. I finally told everybody later because I just decided that the truth would be better because I didn't want to manage the cancer and the lie.
The reaction to the news was kind of like the Vietnam Memorial. Low and slow at first but then over time the crescendo as they began welling up about the possibilities of my death. My parents were divorced but it brought them together for a time. Not romantically but they came to my home more than once along with my brother to talk and reminisce and strategize. At first this was wonderful but later I was tired of the dread. I don't want to belabor the point because there is much emotion left over between my family and my wife. Conflicts built up over the "how can I help" versus "this is how I want to help" type situation. Everyone deals with stress differently and my reaction was to tighten up and live my life. My son was concerned and I had a career to manage plus my wife was pregnant as I mentioned. Because of this I put up an emotional barrier around myself and prevented my mother from hugging me (figuratively and literally) as she desired. It became a very trying time and took YEARS to overcome. I can't stress this enough. I only say this to provide you with the idea of the possibilities. Cancer comes with family politics and if you have any problems (as all families do) then cancer can either bring you together or tear you apart. The main thing is the patient! That was me! I felt I had to manage things that I didn't want to manage (everyone's feelings) and I became resentful of this fact.
So now what we have is fear and the next step. The recommendation was a total thyroidectomy which means the entire thyroid is to be surgically removed along with any affected or as they said, suspicious lymph nodes. The word metastasize became part of my life. I decided to get two more opinions. One in Austin where I live and then I went to MD Anderson in Houston which is a world-class hospital. Both opinions were the same. Take the thyroid out. Apparently there is some controversy in the medical community about total versus a partial thyroidectomy. The most aggressive treatment is the total. I decided to go with that. I wanted it out and I wanted it out RIGHT NOW! I was a great patient by the way. I listened very carefully and did exactly what they said. So within six weeks or so from the night I found the lump I had the surgery to remove the thyroid. I was very calm about it. My Dad even went so far as to say I was in denial. They were hurt by my distance and unwillingness to openly embrace their fears. But I believed I would survive and that I was in the best of hands. The head of the entire ENT department (Dr. Gary Clayman, a great man) would perform the surgery. I decided on MD Anderson because Dr. Clayman had the most experience. I interviewed three surgeons and it was obvious that he was the man for the job.
The surgery went flawlessly and I was there a couple of days. Everything went well other than some nausea and a comical episode of throwing up in the hallway in a trash can (the orderly frantically found one for me) due to the anesthesia. I was discharged and given some instructions. The next step was to have radiation treatment. This involved taking a shot (literaly) of radiation combined with iodine. This radiation would kill and clean-up any remaining thyroid tissue in my neck. But why the iodine? Well it turns out that iodine goes to a thyroid like a bug goes to a light. The word is absorbs. So the iodine transports the radiation right to the thyroid tissue. Anything left over is released by the body (you piss it out in laymans terms). But first I would have to go on a diet. They needed my body to be depleted of iodine so the new iodine would not be blocked. Iodine is not bad for you, it just has to be managed in this special situation. Anyway the diet was diabolical: no dairy products, no bread, no eating out and only a deck of card size portion of meat each day. I had to keep this up for three weeks! The prohibited items had either iodine in them or as in the case of dairy products, iodine is used in the solvents to clean dairy processing equipment. You learn all kinds of useless information when you go through something new.
Anyway, I did my diet (over Thanksgiving no less! Ugh!) and checked back into MD Anderson. I took my shot and then spent two days in solitary (with a tv and total control of the remote!) eating, drinking and going to the bathroom. They would come in with a Geiger Counter and a 36 inch ruler to check my radiation levels. If it was too high it was back in the room and "keep drinking!" Finally I was released....
So now I have no thyroid. Because of this I must take one thyroid hormone (Synthroid) pill every morning which I do without fail. I have had annual follow-ups (ultrasound of my neck and blood work). I'm happy to say I am considered to be cured and am in the survivor's clinic. It was a hell of an experience.
For me I don't really consider myself to be a cancer survivor because I did not have to experience chemotherapy. My experience with the treatment was manageable. But it was the mental anguish that was the real story. I hope that what I have written here is helpful to anyone with this diagnosis. The bottom-line is get to the doctor right away, get tough and deal with it. One thing I do wish to add; I read about relapse rates and the thing about statistics is that everyone is thrown into the same pot. If a person waited a year for treatment (versus six weeks as it was in my case) and relapses, then it would appear that the relapse rate is 50% if you narrowed the scope to the two of us. That is the type of stat that can scare you. Just be calm and understand all the variables. There are all kinds of reasons for relapses including the time it took to discover the cancer, how long you wait to get treated, the skill of the surgeon etc. Just go for it quickly and try to get the best help you can find even if you have to travel. It's your life.
I hope this helps.