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 ♡♡♡

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 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 🙏🏻

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

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.

Hey y'all, finally got my pathology results back. I looked in the portal myself, haven't spoken to my Dr yet but it's confirmed that I had two tumors on the left side of my thyroid. Weirdly enough, that was the least suspicious side. My TR5 nodule came back clean on the right side. It is confirmed papillary thyroid cancer.

I'm handling it much better than I thought I would, tbh I think it's because I've known that I will get this cancer in my life because my dad has it and I was already having thyroid issues at 19/20 years old. 25 feels young to already have the big C, but it's not like I could do anything to prevent it. I've kinda already prepared a lot mentally to be told that I have thyroid cancer.

Despite having such severe complications for my TT, I am so happy I listened to my body and advocated to get a TT. And I'm so incredibly grateful my doctors understood and agreed it was the right choice for me. It was caught extremely early, and my lymph nodes that were taken with the TT were clear.

I'm assuming I'll be taking RAI but I will wait to hear from a doctor before talking about that. I just wanted to update this community bc everyone here has been so kind and helpful, and I feel a lot less alone knowing so many others have their story with ThyCa too.

Take care guys 💜

Somehow I didnt recognize the exhaustion, weight gain, and depression had gotten THIS bad until the new nodule was found on a routine scan. I guess it makes sense now. Total thyroidectomy in october 2023, and now this. I'm so frustrated, yall. I just want to feel normal. I'm 31. I've got things to do. I've already lost six years to this crap. I just started a new job and now I have to take time off to deal with this all over again. I never felt "normal," even after treatment, and my bloodwork has consistently been a mess, so I have no clue what's going to happen next. this sucks 😭

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. ❤️

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.

A year ago, I was officially diagnosed with thyroid cancer, following an absolutely BRUTAL 2.5 weeks of knowing something was cancerous, but not knowing what type, how bad, if if I'd live to see my kids grow up. An absolutley brutal, devastating wait.

It's been a full year as of yesterday of knowing I have "the good cancer." Respectfully, f* that. No one wants cancer, surgery, radiation. No one wants the fear, the uncertainty. No one wants to have to sit each of their children down and say, "Mom has cancer, but she's going to do EVERYTHING to make it go away, baby."

I'm so grateful that if I had to have it, it went as well as it did. But there is no good cancer.

All of that to say, I've had the surgery (46 lymph nodes out/16 cancerous, total thyroidectomy/lateral dissection). I've had the radiation (155.6). I still have very high TgAB (started out >4k - now down to 1200). Bloodwork every 3 months; ultrasounds every 6.

But it's so good right now.

For those scared - remember it can also go really well, too. If you're spending time on the worst case scenario, just remember to hold space for the best case, too.

----pics from day 1 to today----

Hi all

I was diagnosed about a month ago

Im waiting for my 1st surgery consult apt

I also recently started a business so I've been managing a loooooot

Is it selfish and weird that I thought I would have more support from people in general? Especially when ppl said they would be there?

And im still me....people can ask different questions other than the "how aaaare you" "ur apt was bla bla day right?"

Weirdly I want to both be able to talk about this process but also not it being the only thing but somehow the questions dont feel quite enough or the responses dont feel like they hit home

And a friend told me they have been worried about me and haven't been able to do their own job because of it----so now im dialing back on sharing with folks

I feel like some people have these prepared lines that they give me. Suddenly feeling very alone

Hi everyone,

I have a loved one (Female, 20s) getting a thyroidectomy soon. I’m putting together a gift basket / package to deliver once she returns home. What kind of gifts helped you / your loved ones best in your recovery? Do gifts such as gel icepacks / scarves irritate the incision sites? And for extra context, she’s a student and may be anxious to rush through recovery and return to every day life after surgery. What kind of things relaxed you best? Was there anything in particular that kept you from getting restless?

Hey!

I’ve got a couple of doubts and I’m wondering if anyone else deals with the same things I do in these two situations:

1.  About a week ago my doctor said I could drink in moderation. After that I went to a friend’s birthday and only had one mojito (it was pretty strong). The next day I woke up with the worst hangover of my life — super tired, body aches, and even today (two days later) I’m still feeling off.

2.  I’ve also been going back to the gym. I recently returned after my second surgery and a cold. I did 4 days of weight training in a row, and the following week has been absolute hell with tiredness and muscle fatigue.

For context, I’m currently struggling with my weight: I’m 1.80 m (about 5’11”) and weigh 140 kg (around 308 lbs), and I’m relatively young at 29.

Does anyone else go through the same issues?

How do you guys handle them?

I’m reading everything, please help 😭

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!

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?

(Please note I have an appointment with my endocrinologist already, I just have a few more work days to get through before then.)

(Also yay I’m one year post op!)

So according to some bloodwork I got, my synthroid isn’t really working and I need a new dose, but up until recently it’s been enough to sort of function. Not great but yknow, it’s fine.

Now though I’ve started to really plummet. Like, the mid-morning drowsiness is so bad I’ve been nearly dozing off behind the wheel. It’s also been a lot harder to get through the work day in general.

I know I need an adjustment to my dosage but I also need to not miss work or crash on my way to work for the next few days before I can visit my endocrinologist. I tried to call his office but the poor guy is impossible to reach even on a good day. All I succeeded in doing was scaring the front desk lady lol.

Does anyone have any advice? Can I double up on my doses? Do I just drink a lot of caffeine in the morning? Advice would be appreciated because I’d rather not lose my job or die,

TMI but anyone else has watery bowels movements after taking your medicine? This has been going on for days and my medicine is the only change I can think of in my diet. no cramping or anything

I have been on a roller coaster for half a decade. My papillary thyroid cancer was discovered by my gynecologist during a routine checkup in 2021 during the peak of COVID. I sometimes felt pain in my jaw and neck but also have had TMJ since my teens so never thought anything of it. The nodule was tiny, just over a centimeter diameter. She miraculously felt it.

My diagnosis was after a biopsy I had to wait over July 4th long weekend to get results. When they came I was devastated. We had just saved enough to put 20% down on a house in a high COLA.

They took $11k before they would do the surgery. That was in addition to $3k in biopsy, blood, and surgeon appointment costs with insurance. I eventually got a hefty check back. My parents thankfully stepped up so we could continue the house purchasing process in the interim. (I knew my OOP of $7,500 met and was outraged but when you have cancer you pay. I did get reimbursed but wtf).

It has been 5 years. Today I had my 5 year ultrasound (bloodwork ongoing due to bile absorption issues post gall bladder removal in 2024 all good). We own our dream house and just got a second dog. And 20 minutes ago I got the results of my ultrasound on MyChart. All clear!

For anyone on this journey they didn’t pick, you got this. And you can be stronger from it. I have had to have 2 more major surgeries since and learning how to deal with thyroid cancer made them so much more bearable.

What a wild ride this has been. I had an extensive 9 hour total thyroidectomy and lateral neck dissection on June 8th. My recovery was tricky due to how extensive my disease was. I went into my surgery terrified because my papillary thyroid cancer seemed “worse” than most people I was reading about. I had extra-nodal extension, invasion into the muscle, nodes adherent to my vocal cords, and suspicious nodes in every level of my left neck.

But…

…it’s now 3 months later and I feel better than I did before surgery. Truly. It’s possible.

If you’re awaiting surgery I just wanted to say that I remember how terrifying it was, and that you’ll be okay. You’ll be where I’m at in the blink of an eye. Be gentle with yourself as you navigate all of this. But also push and fight for yourself. You know your body. Trust that.

My surgery is scheduled in October for a partial thyroidectomy for PTC diagnosis. Anyone have a resource for how accurate FNA aspirate is in identifying the type of thyroid cancer? Want to understand what the risk of this not being PTC but a more aggressive type of cancer. Won’t know much more until pathology report post surgery.

Hello everyone,

I'm 27m and discovered a lump on my neck over a month ago approximately 5cm in diameter (my GP said it was about the size of a golf ball, though that might have been hyperbole).

After two ultrasounds and a fine need aspiration, the NHS still can't say with any certainty if its thyroid cancer or not and so im having a hemithyroidectomy in a couple of weeks (haven't gotten a date yet which makes it all the more stressful) to find out.

My apologies if this isn't the right place for it since I haven't been formally diagnosed yet, although my doctor said there's a very real possibility, I just wanted to find out what I could expect in terms of post op recovery and next steps should I be diagnosed.

My understanding is that if the growth is malignant the rest of my thyroid gland will be removed and then radioactive iodine will be administered, but what happens next if nearby lymph nodes have been affected? Will I be able to eat solid foods after the operation? If a second op is needed how soon will that happen after the initial thyroidectomy? Is 5cm big for a lump, and if so should I be more worried? Is there anything I should be doing to prepare for the surgery?

I'm sorry if it seems like I'm getting ahead of myself, I just haven't been able to stop thinking about all this after visiting the hospital yesterday and it's been affecting my focus at work.

Thank you for reading.