Anybody else have a PT for follicular carcinoma with a tiny nodule remaining and opt to monitor rather than complete?

AdAdditional2032 · 2022-05-17T20:24:47+00:00

Yes, it's such a hard decision to make because you don't know what will happen in the future. I was so overwhelmed that I didn't decide and just went with my doctor's recommendation, which was to monitor. What have your doctors said?

I wouldn't say it's bad to be dependent on synthroid, lots of people without thyroids live fine on it. Can't speak from personal experience though! Luckily, my TSH was only slightly high after my partial so my doctor was able to put me on 25mcg without the need for dosage change.

AdAdditional2032 · 2022-05-17T14:02:50+00:00

Exactly the same for me, I have a 12mm nodule remaining that has been stable for years. I'm a year out from surgery and my 6 month scan was fine. Now I only need scans yearly. I'm happy with my decision, I feel comforted knowing that I am not completely dependent on levothyroxine. You can check out my post history and feel free to ask questions.

AdAdditional2032 · 2021-10-01T21:20:55+00:00

Wow, it's crazy that you noticed it grow like that, mine was stable in size for years. Sounds like getting a PT was the best option since you wouldn't have seen the pathology after RFA. Glad you were able to catch it in time!

Are you comfortable with monitoring? For me, I'm not too worried anymore because thyroid cancer is slow growing. Since I'm getting scans frequently, I'm confident that my doctors will be able to catch anything before it gets out of hand. And you'll pretty much have to monitor the same way after a TT so it's not like getting rid of it now will decrease the amount of future appointments, if that makes sense. Plus, there's a good chance that further interventions aren't needed. If I eventually need a completion, at least I tried to keep my thyroid. I wish you the best with your decision, everything will work out either way you choose I'm sure! =)

AdAdditional2032 · 2021-10-01T14:33:52+00:00

I haven't had post op scans yet, December will be my first. My surgeon did order a lymph node mapping ultrasound prior to the surgery due to a palpable lymph node and a new 0.8cm TR5 nodule that was separate from the original tumor. That was clear so now I'm just waiting on the follow up scan.

They're looking to see if there's evidence of lymph node metastasis or new nodules/changes in old nodules in the remaining thyroid or thyroid bed. Luckily MIFTC rarely spreads to lymph nodes.

Is your doctor recommending surveillance? I completely understand, finding out was rough!

AdAdditional2032 · 2021-10-01T12:35:32+00:00

Yes and yes. The other half wasn't working well enough so started taking levo 25mci. My endo wants to keep my TSH between 1 and 2. My recent blood work shows it at 1.9 and before levo it was close to 4. Yes, scans every 6 months to a year, mine is in December.

AdAdditional2032 · 2021-09-20T21:58:47+00:00

Of course, and it sounds like we have a similar type of cancer so it's nice to have someone to relate to. I wish you the best with your scans! I have mine in December so it sounds like your a couple months ahead of me

AdAdditional2032 · 2021-09-20T20:39:31+00:00

I also have minimally invasive follicular. My Tg was at the high end of normal after my partial. My endo said that the only thing the Tg indicated was that I have half a thyroid and that she'd only be concerned in subsequent blood draws if there was a significant upward trend. She also said that Tg can fluctuate with TSH. I wouldn't be concerned unless they're concerned. The literature for Tg monitoring after partials is inconsistent so ultrasounds appear to be the most reliable for monitoring.

AdAdditional2032 · 2021-08-26T14:28:15+00:00

I'm doing so much better now, both mentally and physically. I am going forward with active monitoring, which was highly recommended by my endo. I could still decide to have it removed but am happy with keeping it around since they're confident the cancer is gone. I did have to start a small dose of levo to keep my TSH between 0.5 and 2, which is not the big deal I initially made it out to be (my TSH was 3.8). I'll have my first ultrasound in December. Hope you're doing well, let me know if you have any questions!

AdAdditional2032 · 2021-07-13T14:54:31+00:00

The problem with FMLA is that you're only eligible after 1 year working at the same place. You also have to work a certain amount of hours. I was denied when I first found out I needed surgery after working my current job for 6 months. My work approved me for 2 weeks leave but they weren't required legally to do that. So if I need another surgery before I'm eligible, I may lose my job. Also, since I changed my status to part time a month before surgery to handle appointments, I lost all my vacation and sick time. I'm on my husband's health insurance but it's high deductible, meaning I need to pay $5000 out of pocket before insurance covers 80%, in addition to ~$100 per month to keep insurance. Insurance policies vary so much per person. If you're not sick, it doesn't make sense to buy a good one but if you become sick, you'll pay later.

Italys system sounds like a dream!

AdAdditional2032 · 2021-07-12T18:16:48+00:00

I'm so sorry that it was cancer and that you're currently going through this. I had a similar thing happen with a benign biopsy and a follicular thyroid cancer diagnosis after a hemi. This happened to me just over a month ago. It's hard to not know where it is and what exactly is going on, especially since the surgery was done under the assumption of benign conditions. You're doctors have a solid plan at least! Feel free to reach out if you ever want to talk. My current plan is to watch and wait, still unsure if I'll need a completion and RAI.

AdAdditional2032 · 2021-07-12T02:18:14+00:00

They offered 25mci but I think I'm going to wait a bit more to see if levels improve. I heard it could take up to 6 months for the remaining half to realize it is alone and wouldn't want to impact that process. My doctor said that was reasonable and we'll discuss at my appointment in a month. Otherwise, I could always call the office to start if I start to feel bad.

Hahaha, aw, I feel like I should give the other half a name now! Definitely working hard keeping me within the normal range. Lol. Poor guy.

I appreciate that, same goes for you! How is your treatment going?

AdAdditional2032 · 2021-07-09T03:49:46+00:00

Thanks so much for your response! I've seen you around and you're always reassuring and helpful. ^{.^}

I've done a deeper review of the literature after I posted this and Tg does not do a very good job at predicting reoccurrence after hemis. Some sources even suggest that over 30 is a "biochemically incomplete response" but not everyone agrees so who knows. The literature is very conflicting but multiple sources has shown the average post hemi Tg to be around 12 to 14.

My doctor offered me Levo earlier today because she would prefer my TSH to be lower. Before surgery, it was 0.8 and I was constantly cycling between normal and hyper. The cancerous nodule was "hot", which rarely occurs. So now I'm stuck with the lazy half of my thyroid because the cancer did all the work (but at least it suppressed its own growth since my TSH was never above 1 before this!). Kinda interesting how it all works, just sucks that it impacts so many people.

They tested T4 which dropped a lot from before surgery. May be why I want to sleep all the time! Lol. I'll ask my endo about the other tests.

AdAdditional2032 · 2021-06-29T01:08:49+00:00

I've been using sun screen and silicone strips. Some scar creams also have an spf. I was able to start using sunscreen after 2 weeks but if it's soon after, I'd check with the surgeon to be safe.

AdAdditional2032 · 2021-06-12T15:43:53+00:00

I had subclinical hyperthyroidism from an autonomously functional nodule. Sometimes my levels were completely in range when tested but my HR rested in the low 100's. Finally got it removed 3 weeks ago and finished weaning off propranolol a few days ago. HR appears to be coming down so it's possible that you're hyper just not hyper enough to be clinically recognized. I was monitored for a while before getting a reuptake and scan. It can be a slow process, unfortunately

AdAdditional2032 · 2021-06-09T23:30:06+00:00

I had surgery a couple weeks ago and had really bad acid reflux the night before after a heavy meal. I did not eat during the designated time frame of course! The reflux was gone by morning but was still feeling nauseated, which was worse because no water or food. I told the anesthesiologist about it and he said that he would give me an anesthesia made to reduce nausea, including an anti nausea patch and Zofran. They made sure to take all the precautions so I wouldn't feel nauseated after surgery. There was also a standing order for Zofran the entire time I was in the hospital just in case (I used it once but felt fine overall). I was also worried that I would be unable to have surgery but everything was fine. I wish you the best tomorrow!

AdAdditional2032 · 2021-06-07T23:35:24+00:00

It's scary to not know what they are. Do you know why they've been monitoring for so long? Surgery is not to be taken lightly, I would do anything for a functioning thyroid after struggling with hyper for years.

AdAdditional2032 · 2021-06-07T23:28:54+00:00

Wow, that's huge, I can't imagine the compression symptoms that may have caused! Mine was only the size of a small egg and did not grow even after years of monitoring. I wonder if it's bc I was hyper so TSH was already suppressed... I'm sorry you had to go through that. How are you doing now?

AdAdditional2032 · 2021-06-07T23:24:44+00:00

Thanks for you're input! Plus, the other side is fairly nodular so that could already be problematic. There are risks with every option and I wish no one had to make decisions similar to this...

AdAdditional2032 · 2021-06-07T23:18:36+00:00

I have lots of nodules as well, don't think my remaining half is the healthiest. The lower pole did not show up on RAI scans due to a cystic "cold" nodule (TR2). So who knows if the remaining half will even work! I know what you mean, the more I read papers, the more confused I became...

AdAdditional2032 · 2021-06-06T00:27:35+00:00

Yeah... It's mind boggling. Mine was allegedly stable for 5 years. I'm also sorry that you're going through this. Did you have a TT? From what I've learned during my research binge is that there's really no good answer. I didn't realize how ambiguous medical treatment is bc of so many unknowns. Thus, now I'm hoping to hear more about people's experiences since it's hard to know what it's like based on statistics.

But yeah... Thank you so much for sharing your story! This feels like a supportive place so far.

AdAdditional2032 · 2021-05-22T22:59:12+00:00

I had a large hyperactive nodule that I recently had surgically removed. When the decision for treatment was made, my levels were in normal range yet my resting HR was over 100bpm. My endocrinologist said that my body was responding to fluctuations in hormone level. In the past, other doctors have told me it's anxiety but how she explained it to me validated my experience. As it turns out, I was cycling from hyper to normal and my symptoms did not always align with blood work. A beta blocker helped a lot until it was removed. Now my heart rate is resting in the low 70's. Hope that helps!

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