Papillary Carcinoma of the Thyroid

It has been my experience that putting the adjective good before the word cancer is in poor taste. It's not that I do not appreciate the extremely successful cure rate with this type of cancer because I do. It has been two years since my initial diagnosis and I'm still here to write about it. The problem for me personally in hearing this cancer described in essence as a "cake walk" is that it really isn't. It has been a great disruption in my life. I am more fully aware now of how the quality of life may sometimes be more important than the quantity. Papillary carcinoma of the thyroid gland is usually very amenable to treatment. The standard treatment is to remove the thyroid gland. Endure a period of becoming hypothyroid while following a restrictive low iodine diet. This is to prepare for the chemical aspect of the treatment. That entails swallowing radioactive iodine and then hermitting yourself away for at least three days in seclusion. For the first three days at least after the radioactive iodine you are as "hot" as a chest x-ray. It is impossible to be near loved ones for any length of time for their own safety. This cancer that is touted as the best kind of cancer, if you're ever going to get cancer is most notably one that requires isolation. In an of itself the period of isolation at a time when you feel extremely unwell due to the radioactive material working internally was one of the loneliest experiences of my life. Depression is almost guaranteed without any thyroid hormone replacement during the period right before the treatment. I make the comparison between having a good cancer and being a little bit pregnant. Cancer is cancer and pregnant is pregnant. It all depends on whose hosting the party.

Non Avid Papillary Carcinoma
If you have an immune system that is on overdrive it may make the radioactive iodine experience null and void. As was the case for me. I have had auto immune like illnesses for many years. I live in a state of having undifferentiated disease. It's not quite Lupus and not quite Scleroderma or Polymyositis. The symptoms of undifferentiated are a unique blend of symptoms unto myself. I have auto antibodies that show my disease is in a limbo state. Over time it is suspected to differentiate into a more clear cut case of one specific disease. For now I experience a hodgepodge of unpredictable symptoms. Most notably fatigue and pain. This underlying condition has caused a complication when treating the papillary cancer. My body created antibodies to thyroglobulin. This is something that the doctor can measure by blood test. Normally if the thyroglobulin levels are high it is a marker that there is still thyroid cancer present. That blood test can no longer be utilized because the results are not reliable in my case. My immune system I believe played a role in creating a non avid thyroid cancer. Non avid means it does not behave like a typical thyroid cancer. It did not take up the iodine and therefore was not eradicated. The papillary carcinoma has been an aggressive type for me.

Neck Resection
So, what happens when you have a thyroid cancer that does not take up the radioactive iodine and you have developed antithyroglobulin antibodies. You get ultrasound and CT scans to check for existing cancer. When more is found you have to have more surgery. I had a neck resection five months after the failed radioactive iodine. Thirty eight lymph nodes were removed from my neck. Only two were positive for existing cancer at that time. I counted my blessing which were, 36 good lymph nodes and went home to heal up. In ten days I developed a large seroma. A seroma is a collection of serous fluid under the skin. It is very similar to having a large fluid filled blister. I had that drained a number of times and wore pressure dressings to keep the swelling at bay. Eventually I healed up fine with some residual numbness at the scar site and upper chest area. Not a horrible complication but very uncomfortable. Four month after the surgery I had a CT scan of lungs and neck. There are some tiny nodules in my lungs that are being watched for changes. Those scans were fine.

You lose 2 you gain 2
Last week I approached my next scheduled four month ultra sound with great confidence. Focusing on the still oft quoted, "good cancer" message I found myself lying on the exam table and feeling calm. The whole scanning process took about a half hour. Customarily I meet with my doctor about an hour after the scan. The system that Mass General in Boston has in place is great. The doctor has the results up on his computer screen when I come in for my visit with him. This time was no different. In a short order I learned that I have two tiny lymph nodes that are "not good". They are also too tiny to operate on at this time. So, we are taking the wait, see and scan approach as there is no other way to deal with it. I will return to have a CT scan in a few months of the neck and the chest at that time. There is still a matter of the tiny lung nodules that have to be watched.

Psychological Soup
It still isn't a devastating outcome when you come right down to it. It is however more of an emotional disturbance to know that I still harbor thyroid cancer two years later. Staying positive is something that I am usually good at. However, I must admit my mind does tend to make psychological soup at times. It can be a recipe for anxiety if I stir the pot too long. A helping of good cancer, with a dash of autoimmune problems, add two scans and two yucky lymph nodes and what have you got! Cancer. For me it isn't "good" or "bad" it just is what it is. It's a cancer that has made itself at home in my body. The treatment is to take it out when it gets big enough for a surgeon to see. It normally doesn't metastasize to far out locations like the brain in most people. But, when I get a headache and I'm stirring that pot I have been known to ponder the possiblity. This cancer hasn't behaved as it should have all along so why would it respect any of the normal boundaries now? Therein lies the most difficult part of having the most treatable cancer. It is disruptive to my life at times. Especially at scan time. I don't feel as though I have the grim reaper looming above me but I do occassionaly catch the glint of a scapel out of the corner of my eye. I'm curious to know how many times a persons neck can be cut open and still leave important nerves intact. As I think this thought I see myself throw it into the pot and rather than pick up that spoon I close the lid on it. For Now.