I am not gathering encouraging information when I read. I have heard so many times "so and so had thyroid cancer 30 years ago, and they are fine!". This is most likely papillary cancer, which happens at an early age and is easily cured with radioactive iodine. This is not the outcome for Hurthle cell cancer. RAI is less than 10% effective with Hurthle cells. There is no other treatment that works reliably. It is regarded as incurable--if it has spread. That is a big, unknown "if".
There is no method to be 100% sure if it has spread. The most common method is to look for the presense of thyroglobulin in the bloodstream, a protein produced by thyroid cells. If there is thyroglobulin in your bloods, there are thyroid cells in your body. The problem is, if there is no thyroglubin, it might mean that there just aren't enough thyroid cells in the body to produce enough thyroglobulin to be detected. If these undetected thyroid cells remain in the body, and are malignant, they will eventually grow and spread, and cause additional problems. From the studies done, most Hurthle cell carcinoma that has spread will recur. There is currently no way to stop it.
Right now, I don't know if I have any cancer in my body. It could be that zero cancer cells spread through my body--that 100% were removed from my body. I really won't know for many months, until the RAI treatment is done and the search for stray cancer cells is done after that.
But it scares the hell out of my that their might be cancer that professionals are saying they probably can't stop from growing.
We can spend billions on sending space shuttles and space stations in space, with overwhelmingly valueless results. We can waste billions on other federal and state programs that many, in the end, produce no value, but we can't put more money into research to save millions of lives for illnesses that everyone predicts can be stopped. The US can't build the best cars. We can't build the best electronics. We can't even make the best clothes. What we can do is create medical care and medical cures, but we don't realize this is our biggest and best industry. For me, it is beyond frustrating--it is literally life and death. From what I am reading, there is a good chance I will die.
There are two risk categories for Hurthle cell cancer:
1. Below age 45
2. Tumor smaller than 4 cm (about the width of 4 dimes)
3. No distant metastases (no cancer spread outside the thyroid)
1. Above 45 (that's me)
2. Tumor above 4cm (that's me)
3. Distant metasteses (unknown at this time)
In the high risk group, the mortality rate of Hurthle cell cancer is 50-65% in 5 years, with the median being 38 months of life. How many months of that 38 have I already lived, if my cancer has spread?
All I can think about is compressing my life into 4-5 years. I have not lived the other 30-40 years that I thought I would live. How can I work and build my business, if I have to be focused on my health all the time? How can I live a 30 year life in 5 years, if I am focused on building a business or my health? I can't concentrate.
Everyone takes for granted that when they get up each morning, they can set goals for the day, the help them make accomplishments for the month, that bring progress for the year, and then for thier life. They plan vacations. They plan to save. They plan for their children to go to college. They plan to see their children get married and to have their own children. They plan to retire. They plan to travel. They plan to die at an old age. When I get up each morning, all I can think about is fighting my illness and not being told that I have 6 months to live. Your whole outlook on life changes. Nothing is long term. It is just survival for the day or month, hopefully for a year or more.