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Hi! I'm a 34 year old female and I just want to share my story with others who might be trying to decide whether or not to have a total thyroiodectomy after getting a thyroid nodule biopsy and they found "atypical" cells and did not get a definite answer one way or the other if it was cancer. I was unsure of what to do when my endocrinologist suggested I have my whole thyroid removed even they they weren't definitely sure it was cancer (which I initially thought was seriously overreacting). I came to the internet first trying to find others with symptoms and stories of the aftermath and that helped me feel a little more comfortable with my decision. I hope this will help others with their decision. I am not an expert on this in any way.
I had goiter, several nodules, hyperthyroidism, and Hashimotos. My endocrinologist monitored my thyroid with blood tests and ultrasounds evey 6 months to a year for about 6 years which started right before I got pregnant with my first child. I was never put on any medication for it as my levels were never really crazy and I thought I felt ok. (Looking back I did have lots of hyperthyroid symtoms that I thought were a result of being pregnant for 18 out of 26 months and then having two kids under 3- occasional tiredness, irritability, brain fog, weight gain, etc...and then I didn't really notice when this didn't go away even after my son turned 6) Then one ultrasound of my thryroid found a nodule with a calcium deposit on the left side (possible cancer indicator) and I had a fine needle biopsy (FNA). They found "atypical cells: which was neither a definite yes or no that there was cancer. My endocrinologist suggested I remove the whole thyroid gland. I was like whoa, slow down, that means I'll be on medication for the rest of my life and we don't even know if it really is cancer, and why can't we just take out half? Here was her reasoning:
1. I had already been having issues with my thyroid and getting repeated ultrasounds for 6 years (that I knew of-I didn't have health insurance in college), and the nodules were getting a tiny bit bigger (fractions of a cm) every time and would eventually choke me even though it might be 10 years down the line.
2. If it was cancer, it was good to catch it early before it got entangled in something they couldn't get it off of or might damage if they tried, or before it spread to other tissues depending on what type it was.
3. At this point if they got it before it spread I could avoid possible radiation/chemo.
4. Once they got me on the right dosage of Synthroid or some other thyroid meds I would be fine
5. It might help me be able to lose weight easier-I had recently lost a total 40 lbs over a year and a half and it was very slow going.
6. Why remove all instead of just the half with the suspicious nodule? Eventually the other half will need to come out once the nodules get bigger or I develop cancer in that half and why do I want to do surgery twice and might as well get it done while I'm younger and healthier instead of possibly when I'm older and can't recover as quickly.
She could still sense my uncertainty so she suggested I talk to the surgeon who had done hundreds of these surgeries. He told me what he would do was take out the left half and while I was still under he would take it to the pathologist to have it looked at and determine if it was cancerous, and if it was, then he would take out the whole thing. He would also inspect the right half to determine if it was worth saving. I believe there was a warning somewhere about other tissues having to be removed but of course I didn't really pay attention to that at the time.
Ultimately, I decided to have the surgery, which ended up being 3-4 hours long (I was told it would be a couple of hours with probably 2 day stay in the hospital after). Still groggy after the surgery I asked what they took and they ended up removing the whole thyroid and one (out of 4) parathyroid glands - which my surgeon referred to as enlarged and "really nasty". He said my right lobe was too diseased to be worth keeping in there as I would eventually need it out and it could develop cancer. It was enlarged and full of nodes and obviously Hasmiotos. Instead of wasting time then with the pathologist they waited for him to do a complete pathology report after freezing and slicing all of the specimens, which I received about a week after the surgery which would tell me if there was cancer. First couple of days post surgery I was groggy and wasn't very hungry, but didn't have much pain at my incision site, mostly my throat was sore from the tube they put in my throat while I was under. Then the hypocalcemia set in and I started getting some tetany (like when you get tetanus)-my hands were almost frozen into claws, and I couldn't really open them and my face was feeling numb, and my legs would get kind of numb easily. Needless to say, there went the 2 day stay. I was in the hospital for 10 days. My doctor said that the parathyroid that they removed was enlarged and probably pumping out lots of hormone compared to the other 3 which probably shrank a bit and they slowed down their production due to the enlarged one. So when the large one was removed, the other 3 were very sluggish and not producing enough parathyroid hormone to keep up my calcium levels. When they checked my calcuim, I was at a 6.1 and normal was above 9 or something and this was really low and if it continued to get lower my heart could stop. So they started me on an almost continuous calcium drip and Oscal, rocalcitrol, Magnesium Oxide, stool softener (because all of the calcium pills and drip can seriously back you up), and the first of the rest of my lifetime of Synthroid. The synthroid is a very tiny pill that you must take early in the morning on an empty stomach. I would get my blood drawn 3 times a day (6am, 2pm, and 10pm) to monitor my calcium and tons of other stuff. Also, I was told the calcium drip is hard on the veins, so my IV had to be moved to a different spot 6 times because my vein would "blow". 3 to 4 days post surgery I started to get stomach pain and was nauseous and didn't want to eat or see any food. I was told this was due to all the calcium irritating my stomach. Once my calcium levels started to go up and they spread out the number of calcium pills I was taking at at time (4 times a day instead of 3) it got a little better but I still couldn't eat much. One day post surgery I was able to walk around, but I would be so exhausted after and I slept a lot. I finally got my pathology report and they did find paillary carcinoma (thyroid cancer!) in the right side-yeah the side I did not have biopsied. Luckily, it looked like it remained within the margin of the thyroid although it was really close to edge, but it didn't look like it spread. My surgeon suggested I take a radioactive Iodine pill that would kill any thyroid tissue that remained, and he said there are always some small pieces of thyroid tissue that stay stuck to my larnyx, and blood vessels that they just can't get because they might damage that important stuff. He said that would be up to my endocrinologist, though. So finally, I got out of the hospital after 10 days. I was still extrememly lethargic and sleeping a lot, but I was able to eat a little more. About 2.5 weeks post surgery, my energy level started gradually increasing, and I got my appetite back. I am very gradually getting weaned off the calcium pills and have to have a blood test weekly to test my level. I saw my endocrinologist and she actually DID NOT recommend the radioactive iodine pill. She said statistically, I had a lower chance of my thyroid cancer recurring than I did of developing a different kind of cancer from the radioactivity in the iodine pill. She said she'd take her chances with thryoid cancer (very treatable, low mortality rate, especially if caught early) as opposed to developing something like leukemia or some other cancer elsewhere in my body. Of course, they would continue to monitor my thyroid area with 3 to 4 ultrasounds a year for possibly the next couple of years and hopefully if nothing continues to show up, they would gradually reduce it to once a year. If the thyroid cancer pops up again, we can always do the radioactive iodine then. So I am about 3.5 weeks post surgery and my scar is healing nicely (about 5 inches across) and once it fades, it won't hardly be visible. My energy levels are gradually increasing and I am gradually feeling more normal. I'm taking one less calcium pill and I am only taking them 3 times a day now. Overall, I'm glad I had the surgery, especially since they did find the cancer and the diseased parathyroid gland. While post surgery was a little rough and I thought I was miserable at the time, I'm sure having chemo and radiation if the cancer had spread would have made me much more miserable.
If you're facing similar decisions and issues I hope this helps! Good luck and may God Bless you!
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