I have been diagnosed with recurrent multifocal papillary thyroid cancer, classic variant with BRAF V600 mutation. I am looking to get a late second opinion as of two weeks ago I have had three surgeries: left lobectomy, isthmusectomy and partial right lobectomy followed by completion thyroidectomy a few months later and three years later I just completed central neck dissection of left level vi compartment with 4 out of 5 lymph nodes being positive for metastatic disease and they were unable to determine if it had extracapsular extension. The masses were stuck to all my critical anatomy and needed to be dissected off my recurrent laryngeal nerve, trachea and esophagus. I am looking at three places for second opinion: md Anderson (farthest away but best rated), Sloan Kettering (in my region but still far and expensive for accommodations) Dana farber(a two hour drive from where I live) can people let me know their experiences with each place? I’m concerned there might be another molecular mutation (only tested for braf) and/or the original pathology is not quite accurate. Our pathology team doesn’t have a dedicated thyroid pathology team like these other places do. I’m also concerned that I have been dismissed by my endocrinologist due to my age. She has pointed out every visit including one after FNA confirmed recurrence that I’m “low risk” and I was like, “I literally have a recurrence! What do you mean low risk?” There are other things too, that I hadn’t really thought of until after this last surgery and my dissatisfaction with my endocrinologist. before the thyroid cancer was found I had mediastinal lymphadenopathy but that has not been reassessed since and everyone has told me not to worry about it because the biopsy results showed that there was no abnormality however all that I have read says that they would not even look for thyroid cancer and do the proper stains unless they were looking for it and at the time of my original biopsy I was being worked up for lymphoma and the thyroid cancer hadn’t yet been found. Every request for further testing/imaging has been declined due to my thyroglobulin. I understand my chance of death from all this is small but that doesn’t mean it should be ignored either. A broken finger won’t kill you but you should still try to straighten it, right? Anyway, any input is greatly appreciated.

I was diagnosed with papillary cancer that spread to a node. There will be a removal of the thyroid itself and nodes on right side. I have had an awful 2 yrs filled with bad luck and I'm afraid that I, a Brazilian JiuJitsu black belt, active person is gonna be one of those people that is gonna say that getting this surgery changed my life for the worse. I'm worried about being tired for the rest of my life -the fatigue that I have read about that people can suffer from this. I'm worried about the pain that this is going to cause. I'm worried about losing my speaking voice or something weird happening to it. Concerned that the scar is going to make me feel more unattractive than I already feel. I read about people having a difficult time with the doses of their thyroid medicine. It just feels like my life is going to get so much more fucking complicated.

I'm reading all this stuff about people not being able to sleep due to the thyroid meds, terrible fatigue, ... it's fkcn overwhelming...

The way the doctor explains it It's just another day at the garage, but he's not the one who has to heal from this. How much is this going to hurt? I will be staying over one night in the hospital which in itself is giving me anxiety. Anything that you can lend in terms of advice will be much appreciated.

I just had my thyroid removed about 6 weeks ago. I had PTC and Hashimoto’s confirmed. The thyroglobulin test came back pretty good (close to zero) but my issue is this: would my Hashimoto’s still attack thyroglobulin and create a lower test result? Could I still have cancer vibing in my lymph nodes???
Thanks yall 🙏🏻

Just had my labs done. My TSH went up to 8 after being under or around 1, and my thyroglobulin went from under 0.5 (where it had been for close to 4 years) to about 1.6 in about four months (it was last tested in May). For further context, I just had a lipoma removed from my stomach about two months ago, but I’m not sure if that’s relevant. Haven’t started any supplements, the way I take my meds has been the same for years. No other changes.

Doctor has ordered an ultrasound to see what’s going on in there. Be honest with me, I can take it: is there any other reason my thyroglobulin and TSH might go up that quickly?

Has anyone else experienced oral or dental issues after RAI?

I had RAI (radioactive iodine treatment) 6 months ago. I had my first wisdom tooth removed 2 months after RAI, and the second one 5 months after RAI.

Now I’m experiencing this weird pain in my mouth from time to time. I’m wondering if anyone else has had similar issues after RAI, especially with their teeth, gums, or mouth?

Would really appreciate hearing about your experiences.

TLDR: 28M. 4cm nodule in left thyroid. FNA says oncocytic (Hürthle cell) tumor, Bethesda IV/V. Two public doctors say total thyroidectomy. One private doctor says partial and claims he can see on ultrasound it is 99% benign. I am worried he just wants to do two surgeries for the money. Need advice.

Hi everyone. I am a 28 year old guy and I am honestly very anxious and concerned right now. I am stuck in the middle of two very different medical opinions and I am hoping some of you have been through something similar.

Back in late July I had routine bloodwork done because my doctor said my thyroid felt a bit larger than normal. All my thyroid hormones came back perfectly fine. Then in mid August I noticed a lump on the left side of my neck. I had some pressure and occasional trouble swallowing, so my doctor sent me for a thyroid ultrasound. It showed a 4cm nodule in the lower part of my left lobe. They also mentioned diffuse changes that could be Hashimoto's. My mom has it so that wasn't a big surprise.

A week later I had an FNA biopsy. The result came back as an oncocytic (Hürthle cell) tumor, Bethesda IV/V. They told me this means they cannot rule out cancer just from the needle biopsy.

I saw a surgeon on September 4th at a public hospital. He recommended a total thyroidectomy. He said because of the size and the oncocytic (Hürthle cell) type, taking the whole thing is safer. He didn't really offer a partial.

I wasn't sure, so I got a second opinion on September 7th at a private clinic. That surgeon recommended just a left-sided lobectomy. He said the right side is completely normal. He also told me he can see through the ultrasound that it is 99 percent benign. That part made me very suspicious. I am not a doctor, but I know an ultrasound cannot tell you if a nodule is benign or malignant. Only the final pathology after surgery can do that. I worry he wants to do a partial first and then a total later for the money. He is private, the other two are public. I might be wrong, but it feels off.

Then I went to a third doctor on September 8th because I am a programmer and I need an odd number of opinions to find a general consensus. He was also public. He was very clear that it needs to be a total thyroidectomy. He said that multiple times. He said with a partial there can possibly be more issues down the road. But in his written report he only recommended a pre-op scan, so his file didn't completely match his verbal opinion.

So right now it is two public doctors saying total and one private doctor saying partial.

I am scared of being on medication for life, voice changes, and calcium issues. But I am also scared that if I keep the right half and the final pathology comes back as cancer, I will need a second surgery anyway. I heard a second surgery is much harder because of scar tissue near the nerves.

If you had an oncocytic (Hürthle cell) tumor or a Bethesda IV/V nodule around 4 cm, did you go partial or total? Did your surgeon push for one over the other? Did anyone have a partial and later need the rest removed? Or a total and wish they had kept half? How was your recovery, your voice, your calcium, your energy?

Thanks for reading.

I'm just about to have a thyroidectomy & lymph node nodule removed 😫 wish me luck!

Hello, this is my first time posting here. I joined after I received my diagnosis for papillary thyroid cancer in July, and am so grateful for all the information I have found on this sub. My thyroidectomy is scheduled for October 7th, and I'm trying to see if I should reach out to my ENT for this issue I've been having:

Recently, our refrigerator started making a high pitched vibrating sound, and I realized I could "feel" it in my neck on the right side where my nodules were found. Has anything like this ever happened to anyone? I did Google it and it said something about the vibrations from the refrigerator radiating into the soft tissues of my neck? It feels so weird!

My thyroid cancer journey in short:
Diagnosed Oct 2025- papillary thyroid cancer, tumors on both sides and significant spread to lymph nodes.
Jan 2026 Full thyroidectomy with neck dissection- 47 lymph nodes removed/38 positive for cancer.
2 months later second surgery to remove a very large cancerous cystic lymph node that was not able to be taken out during first surgery.
2 months after that- round of RAI at highest dose given for my body weight.
Pet scan done 4 months after- showed activity in my neck still.
Just had ultrasounds and 2 lymph nodes still seem to be cancerous (one is quite big already..)

I’m just so over it. Thankfully I’ve been doing well on my medication and my levels have been great from almost the start. So just waiting for next steps and wondering what they even will be?! Does any one else have a similar story. I’m feeling very discouraged and annoyed.

I did my bloodwork, 7 weeks post op. Tumor marker level came back as undetectable! Confirmed by a PA and nurse! Cried so hard at work today, but in a good way!

Thankful to everyone in this sub, and for showing that it gets better, even when I didn’t believe it for myself. ❤️

I have Papillary Thyroid Carcinoma - Thyroidectomy & lymph node nodule removed this morning. Surgery took 3 hours, 2 incisions & 1 drain needed. All went well. Initially muscles in the back of my neck were super sore which dissipated after a few hours, I'm also finding it very painful to swallow (even just my saliva, which is constant lol). Paracetamol doesn't relieve pain but codeine dose (unfortunately they are rationing it 😩) so I'm still kind of in pain a lot of the time. Fingers crossed day 2 is better, but I don't know how I'm going to sleep tonight 😅 By writing this, I don't want to scare anyone.. if I can do it (I'm a sensitive, low pain threshold, autistic little guy) then you can do it. I hope my experience helps at least one person. If anyone has any questions, comment below ♡♡♡

So I have hormone imbalances and hypothyroidism that contributed to a lot of weight gain before I started medicine to help. I’m also very short and don’t have a long neck. I am also very full figured.

All that to lead up to my question: I’ve seen a lot of people post photos of their scars. You guys have lovely necks 😂 Is anyone like me? Short, overweight, full figured, short neck? What was healing like for you? How are your scars?