My mom and I went to my big doctor's appointment today.
For those of you out of the loop a bit - it was my first appointment since finding out I have cancer and the appointment at which we would discuss further actions.
In the nearly 3 weeks since getting my diagnosis by phone call, I have been researching thyroid cancer and in the week since I got copies of my path reports, i've been researching my specific type of thyroid cancer. So I walked in with my notebook of information and my list of 20 or so questions to ask. The doctor started out by telling us his thoughts and assesment on things and then let me ask my questions...
The biggest question I had was "what size was my tumor?" The path report does not mention a size which is slightly odd [but all of this has been] and so he called the pathologist who was miraculously on duty right before the holiday. She said they couldn't define a size really - I could have had cancer first and a cyst grew around it which spread the cells out or the cyst grew first and the cancer cells developed all over the lining. Either way she didn't think if you put all the cancerous cells together that it would be much more than 1/2cm. He asked her if she thought they got it all and what she would do if it was her body they were talking about and she said "I would want the rest of the thyroid out."
He then said to us that yes, with me being 30 and having a very long time for a chance of any remaining cancer cells growing and spreading that he thinks taking the other half out was a good idea but the decision was ultimately up to me. With everything I've read [estimated 80% have cancer in both lobes of the thyroid], I knew going into the appointment that I wanted to do everything to get it all out.
I need 3-6mos to heal from my prior surgery so we are looking at early September for the thyroidectomy completion. Four weeks after that I will have a whole body scan with a small amount of radioactive iodine to check for remaining thyroid cells in my body. And a few weeks after that we are planning on a large dose of radioactive iodine to kill off any remaining thyroid cells. I will have to be in "isolation" for a week because I will be radioactive and will leave traces of radiation on whatever I touch. Isolation means total isolation for 24-48hrs where no one is allowed in the room, then pretty much total isolation for about a week to ten days after that with minimal contact with adults and still no contact with children. Well I have 2 cats and have heard horror stories of pets getting radiation poisoning from their owners so i'm considering a hotel for the week if i can scrounge up the money! After that I will need blood tests and scans periodically to check for recurrence. Starting tomorrow I will be on thyroid hormone medication for the rest of my life to supress recurrence and keep my body functioning.
If all goes well, by Christmas of this year I should be able to say that I'm "cured". [correction: in remission, "cured" means no trace of the disease for 5yrs]
After all that news, mom and I went out for pancakes.
I'd make sure to check with the hotel. I'm not sure if the radiation would transfer to sheets or anything. But maybe let them know. Prays to you.
ReplyDeleteThe radiation does transfer to sheets, etc but usually only the first 3 days. I was going to try to find like a timeshare/condo or extended stay place where they don't clean your room daily and wash the sheets myself in between :) Actually the most contaminated place will be the bathroom so daily cleaning of that is needed too!
ReplyDelete