Here is the list of questions that Randy and I came up with. I really understand what the treatment cycle is going to be so there aren't a lot of questions here, really. I'll sum up the treatment cycle (assuming of course that all is well and the cancer hasn't spread anywhere outside my lymph nodes, but we're not talking about that, because it's SO unlikely).
First, I will go on drugs that will suppress my thyroid function. The pituitary gland releases TSH (thyroid stimulating hormone) and this hormone tells my thyroid to "kick in". We suppress the TSH because when the thyroid kicks in, essentially it is feeding the cancer by doing what it is supposed to do.
Second, I'll have a complete thyroidectomy, removal of my entire thyroid gland (except my parathyroid which is important to keep but I don't know the anatomy well enough to talk to you about this). The recurrence rate of cancer is high enough if you leave thyroid behind that I want the whole thing out. If we're going to cut, let's make it worthwhile. They will also remove a few of my lymph nodes to see if the cancer has moved there. If it has, it won't really change my treatment - or my prognosis. It's just important to know.
Third, I will have a radioactive iodine treatment. This will kill off any of the remaining thyroid bits that are left behind after the surgery (it's not like lifting out a heart, it's a very spongy bunch of cells) and also kill off cancer left in the lymph nodes as well. This is where my treatment would vary if I had cancer my lymph nodes- it would be an increase in the amount of radiation I had to have. Depending on the amount I need, I may have to stay in the hospital because I'll be giving off radiation for a few days (!!!holyshitballs!!!!).
Last, after I am cancer free, I will be monitored by the endocrinologist for 10 years. Once I reach that time, I am considered 'cured' of cancer. I will be on thyroid replacement drugs for the rest of my life.
Here are our questions, feel free to add yours. The appointment is in about 5 hours!
- What is the timeline for the treatment? How long in between phases?
- Will you be my endo forever? How often are we going to hang out?
- Surgery questions:
- Can the surgery be timed? I'm a busy woman with people who are counting on me. Mid-July would be awesome.
- Who will do the surgery, the endocrinologist or someone else (sometimes the endo is a surgeon)?
- Where will I have surgery, preferably not in Seattle (because of distance from my support system)?
- How long will I be in the hospital?
- How will I feel afterward?
- How long will I be restricted?
- When can I work?
- Radiation questions
- How soon after surgery do we do this?
- Pills or drink?
- Dosage depends on lymphs so what will I experience either way?
- TSH suppression with or without drugs?
- Risk of radiation treatment/risk of not having it
- Increased risk of leukemia- by how much?