It was a long ten days from hearing I have cancer to my surgeon visit where I would learn more about the diagnosis, the next steps, and what it meant. A very long ten days. And my husband had to fly to San Francisco the week of my surgeon visit. The days leading up to the appointment I was alone with my thoughts at night (and in the car, the shower, when my kids had moments of peacefulness without petty fights….) and he couldn’t be there with me to learn the next steps. Luckily, my father was able to come with me so I wouldn’t be alone trying to take in what my diagnosis meant and all the information we needed to proceed.
At the appointment I learned my prognosis is very good. Based on my age, sex, and the size of the nodule there was no reason to believe my lifespan would be affected and probability of recurrence is low. I did get the rug pulled out from under me though. I would need a total thyroidectomy (TT). At the ENT appointment it had sounded like I would only need a partial removal.
The thyroid is a gland shaped like a butterfly or bowtie if you will. The isthmus is the center which connects the two lobes. The cancerous node was on the isthmus, so a partial removal was a no go. My surgeon said 20% of the time partial removals end up needing a second surgery for a total removal. Might as well remove it all he happily told me. (I have seen the 20% stat several times, but can’t find it now to site. Next time I see it I’ll link it in this post!)
With a partial removal there was the chance of the leftover thyroid taking over the job of the entire thyroid. You can live without the thyroid, but, a total removal means you will depend on medication the rest of your life. I found out at my endocrinologist appointment 90-95% of patients are able to adjust their medication dosage within the first 3-9 months, thereby maintaining a quality of life at (or very close to) what it was before the thyroid was removed.
This was very positive news to hear since what you see online seems to be the majority of people, when in fact, it’s coming from 5-10% of people who haven’t adjusted to the medication. Makes sense. If you’re doing fine, it would make you seem kind of douchey if you were constantly saying how great you were in a support group where most people are struggling.
We cancelled our summer vacation so Rich could use the time during my doctor appointments and recovery instead. We hadn’t told the kids so it wasn’t a big deal for them. We still had to tell the kids about the surgery and that mom was sick. They took it well. The news was mostly over their head but talking honestly about it was the right thing to do and helped prepare them for after the surgery.
Before surgery we also had an initial appointment with my endocrinologist. Our endocrinologist specializes in thyroid cancer, but often times their focus is diabetes so confirm that they have experience with thyroid cancer. There was also an ultrasound and CT scan of my neck to confirm the size of the nodes, there were 3 total, and check the lymph nodes. My scans came back with the sizes of the nodes and no lymph nodes that were visibly cause for concern.
A lot of information to take in, in two weeks. And we didn’t have all the answers before the surgery either. Every case is different, so it’s best to stay off the forums and Facebook groups as much as possible. To know what happened the four weeks after my surgery, I also wrote about that here. And if you have questions ask in the comments! I’m not a doctor and can only tell you about my experience, but maybe I can give a little bit of behind the scenes that the doctors seem to sort of gloss over.