Thursday, May 24, 2007

complicated per Paul Harvey

I have heard from my endocrinologist for the official interpretation of my last round of tests. Nothing in the world of endocrinology is simple to understand -- so I'll explain this as best I can:

The Short Version:

My cancer is not any worse than it has been in the past several months. In fact, the bad numbers keep getting lower, which is good, but they're not yet low enough. The PET and WBS scans were negative, which means there are not enough cancerous cells lumped together to show up on the scan, but that does not mean they are not there at all. The plan is to wait six months and do this testing again to see what the numbers show (if they are worse, we will do another treatment; if they are better, we'll discuss different options).

The best news is that I'm able to still keep my New Year's resolution: As of now, there's no need for me to have another surgery, which I'm biased to think is damn good news.

The Long Version:

I take Synthroid every day because I no longer have a thyroid gland. It was taken out in my first surgery and I've had two ablation radioactive Iodine doses to fry what was left. Thyroid hormones are important if you want to live, so I now take mine in the form of a pink pill every morning. Normal people have normal levels of thyroid hormone in their blood stream and bodies. Occasionally people can develop problems where this natural level is either too high (hyperthyroidism) or too low (hypothyroidism), and both of these conditions have their own set of symptoms and problems. Sometimes people take Synthroid because their thyroid glands do not work as effectively as normal people -- they take it as a supplementation to their abnormally functioning thyroid gland.

Because I had thyroid cancer, we want to suppress all thyroid funciton that my body would normally make for itself. It's true that we've taken measures to kill all of the thyroid tissue in my body, but that does not mean that it's all gone. (Even during the surgery the surgeon has to cut around major blood vessels, nerves, and another important parts and organs in your neck, which leaves behind thyroid tissue.) Because we want to suppress my thyroid function, I am on a higher dose of Synthroid than normal hypothyroid people. We do this because we don't want any thyroid tissue in my body to think that it needs to work -- we want to suppress it all together, even the healthy tissue, because we'd rather it not play any reindeer games.

The lab we use as a tumor marker, thyroglobulin, will also "pick up" vibes from normally functioning thyroid tissue as well as cancerous thyroid tissue. It's not an exact measure of only cancer cells, but it's the best test we have for now. We use the thyroglobulin results as well as the results of the PET and WBS scans to interpret the status of disease.

My PET and WBS scans were negative, which means there were not enough cancerous cells lumped together to show up on the scans. However, the thyroglobulin was higher than we want it to be.

This is where things get complicated.

The thyroglobulin was not through the roof, which is good. Even though my value, lucky 13, falls within the "normal" limit of thyroglobulin, you have to remember that we're measuring this because of a history of cancer -- we'd rather it be zero, even when I am off of Synthroid (which suppresses thyroid funciton for me - which means that being off of the Synthroid, or suppressing the agent that suppresses my thyroid function, would also yield zero if there was no functioning thyroid tissue in my body). (Try saying that three times fast.)

At this point it is hard to say what the next step should be. Should we go ahead and work towards another ablation radioactive Iodine dose? Even if we're not 100% sure that the thyroglobulin picked up cancerous thyroid tissue versus remaining normal thyroid tissue? This would be my third dose -- the long-term effects of this cancer therapy would start to pose bigger problems for other organs in my body.

When my doctor was going over my results with me she asked me what I wanted to do. I told her that if she told me to strip naked and jump through a ring of fire into a tank of piranha, I'd do it after I rolled around in bacon fat. I told her I trusted her judgement and thought we should do whatever was the most prudent, and the most safe. I admitted that I've been telling her that I wanted to hurry up and have babies not because my clock was ticking but because that's the imaginary benchmark I've set for myself (I've imagined that when they tell me it's safe to conceive, than that means I'm out of the woods, done with this monkey on my back.).

We talked about the potential problems that might come with a third RAI dose, and we decided that we don't have a diffinitive reason to believe that my thyroglobulin is referencing cancerous tissue or normal tissue. Based on this, the plan is to wait six months and do this again (Thyrogen, the medication which encourages thyroid function without having to stop taking Synthroid + scans).

Six months may sound like a long time, but you have to remember that my type of thyroid cancer truly is a horse of a different color. It is typically very slow growing. If in six months we repeat these scans and my thyroglobulin is higher, we will assume it is cancerous tissue and discuss how to kill it. If it is the same or lower, then we'll have another pow-wow and play it by ear. In the meantime I have another appointment in three months for her to feel around, or palpate, my neck to make sure she does not feel anything abnormal.

Although I'm not popping the cork on a bottle of champagne, it's not necessarily bad news. It's just more hurrying up to wait at this point, which only highlights the reality of living with cancer as a chronic illness for us. For the rest of my life I will be followed and evaluated for progression of disease, which is the nature of this beast.

And that, my friends, is the rest of the story. Good day.

2 comments:

ladybugsandbees said...

I am a fellow ThyCa survivor. I was dx'd 7 years ago. I just thought I would let you know that there are other options to treatment. I did RAI 3 times and I believe it was a mistake. It sounds like we have similar stories. I am documenting mine in a blog: http://ds-ladybugsandbees.blogspot.com/ - take a peek if you are interested.

Stephanie

arielle said...

Sorry you have to wait. I know it sucks.