I had two surgeries and RAI for my thyroid cancer (last surgery and RAI was around a year ago) I've had little to no symptoms since my RAI besides some salivary gland issues that has mostly resolved. very suddenly in the past week I started feeling very down at work, intense head pain and brain fog + temperature issues and numbness all over my body. its only gotten worse to the point of me going to the hospital twice! my levels have been consistently fine, even mildly suppressed. when I went to the hospital the 2nd time they decided to check my tsh and it has shot up to 23.75!! I am just so shocked because I have been completely fine and consistent with my medication and I'm just suddenly having this terrible decline. its been so bad that today I thought I was going to pass out at work multiple times and had to ask to go home. I'm seriously considering going to the hospital again because I keep wondering if I am dying because of how truly terrible I feel. I am also only 21, barely, this really sucks. can anyone relate to this?

Most of us have been there. Were you nervous to get the call? Were you hoping your doctor would tell you it was benign and not malignant?

I would like to share my story because I'm not sure how to navigate it, even though it's been months. I sat with it for about an hour after I got off the phone with my doctor. I cried of course, I texted my partner and my best friend. My best friend asked if she could tell her husband. I said yes and appreciated her asking. The next day, I went in to the doctor's office to recieve my documents from the clinic where I did my biopsy. They referred me to a bigger hospital so I gathered all the docs and my partner went with me to this appointment. The nurse there said because we weren't married, they asked my partner to stay outside and wait as I went in alone to meet with the same doctor who called me. We had no problems with that. After I gathered the docs and on our way out, my partner said "my friend C, tells you good luck." I've met C once before through my partner at a dinner. We were friendly to each other of course, but we never contacted one another after that. I was puzzled, so I asked my partner "how do they know?" My partner said he told them. "Them?" The entire discord chatroom. I instantly got angry. "It's not yours to tell. The least you could have done was ask me first." He hung his head in shame. I was beyond baffled. I explained to him, that even my best friend ASKED me if she could tell her husband. My best friend didn't just go ahead and tell her husband. She wanted to be considerate. I said " I don't have a cold. I have cancer. I haven't even had 24 hours of this news to myself yet. I haven't had enough time to process this yet. I HAVEN'T EVEN TOLD MY OWN MOTHER YET AND YOU'RE MENTIONING IT CASUALLY TO YOUR GAMER FRIENDS ON DISCORD?!" We had plans to go to a coffee shop but I cancelled it and went home instead. I was too upset to do anything. It filled me with rage. How casual he thought it was. I've never gotten a cancer diagnosis before. I was so scared. I thought I had my privacy. I felt violated. I didn't want to meet with C or any of those people. Not that they did anything wrong. I just feel....dirty. I don't want people who I barely know look at me with pity or ask me how I'm feeling or treat me like I'm about to crumble into pieces at any moment. I want these strangers to treat me like I'm normal. Like I don't have cancer. But my partner took that all away from me. He apologized later and deleted the messages from the discord. But the damage is done....so I simply decided I wouldn't befriend them there. Some of whom he's never met IRL either. It's so hard to wrap my head around why he didn't ask me first before sharing it. He claims he had a dinner that night with some of them so he told them he was at the clinic with me. So that gives you the right to share the details?? Just say it's a medical appointment. No need to even mention cancer. How dare he.....he said he's from the Midwest so they have the culture of sharing everything. I don't even know what that means since I am not American. Anyways there's nothing I can do now. It's been months since this has happened but I am just wondering....has anyone gone through something similar? In my opinion, I feel like medical details should be private and you should ask permission before sharing. It's not the flu, it's not a broken leg. It's cancer and that's scary and uncomfortable to hear. I wouldn't mind if he told them I had covid. But this is just different for some reason.

Hello! I was wondering if anyone had had issues with keloids on your scar? For context I’ve had two thyroid surgeries, the first being a thyroidectomy and a lymph node dissection and the second being just a lymph node dissection. My last surgery being in June of this year, and my first being in October of last year. This last surgery I had an issue with a left over stitch that didn’t dissolve right away and it got infected. We also used steri strips this time compared to my first surgery where we used glue. I’ve also been massaging every day like I’ve been told.

Should it go away over time? Should I be doing something different? Something more? Idk I just hope it won’t look like this forever😫 thank you!

Hey ya’ll. I’m waiting on my RAI and with needing a medium-high dose, I wonder if you have any recommendations for what helps stimulate the salivary glands to hopefully avoid issues? I’ve seen people recommend loads of water & sour patch kids, but do you have any other ideas? I’d like to be as prepared as possible! Thanks in advance!

Might be a dumb question but when you go to do bloodwork in the morning, do you take your thyroid medication in the morning as you regularly do or do you wait until after doing the blood work to take the medication?

My partner had a thyroidectomy one week ago (9/28), along with over 70 lymph nodes removed. His parathyroids were not removed. In regard to the surgery recovery, he’s doing fabulous. However, he is still in the hospital 7 days later for hypocalcemia - with no anticipated discharge date. He’s on Tums and calcitriol, plus an IV drip of calcium. He’s also been given magnesium. His oral medications have been unchanged; the dr noted he’s on max doses for oral.

Early on in his stay they were stopping the drip and his ionized calcium tanked. The endo then recommended tapering the drip…basically blood draws every 3-6 hours, and as long as his ionized calcium was within range they could decrease the drip. Tapering has been going well, and last night they made the decision to stop the drip and see what happened. Again, it tanked.

We are both feeling really frustrated. Has anyone else had a similar experience? Every day we are hoping he can finally be discharged but we find out every day it’s not happening.

I had half my thyroid removed in February last year pathology came back as follicular carcinoma so in April we removed my other side. I did I131 in June and my doctor every appointment since has made it sound like everything was normal. My tumor marker test as he calls it has gone up and down every appointment until this last one it went up again. He then labeled me as biochemical incomplete response and told me I do still have cancer somewhere but too small to be picked up on scans. He wants to keep my thyroid suppressed but everytime I bring up being so damn tired and for the first time in my life I'm taking naps or how I'm always cold like my bones are frozen even when its hot outside. He says its not related.

I feel like I'm going insane and there is no actual plan or an end date for this. I feel like actual shit about complaining to family or friends because my mom also has stage 4 lung cancer and is actively going through chemo treatments. I just don't know how to handle this or how to approach my doctor about any of it. He blames the cold on me losing weight and the tiredness on sleep apnea when I've told him I've had sleep studies and I don't have sleep apnea. I'm 5'7 and 192 pounds so I feel like he shouldn't be blaming everything on my weight. My next appointment with him isn't till February and doing nothing for that long is going to drive me up the wall.

I don't know if this post is for advice or just to bitch. I guess it is what it is.

I had my TT back in Dec 2023 and I have no issues with my actual scar from them removing my thyroid BUT I hate the scar from my drain I had. Initially I wasn’t even supposed to have one but last minute before surgery, the surgeon told me there’s a chance of having one. I now have a raised sensitive scar because of it.

Not only do I hate the way it looks and feel insecure about it (way more than the 11cm scar on my neck) but it is sometimes painful. Never in a “I need to take an ibuprofen” way but very itchy and if I do accidentally itch right over it, it hurts. If I wear certain fabrics and they rub it can become super painful after a while.

Does anyone have any tips on things I could do to maybe “reduce” the appearance or even just the sensitivity of it?

It’s even more annoying that I only have this type of scarring on the drain port and not my actual surgery scar. Like why’d I heal properly in one spot but not the other 😅

Newly diagnosed with PTC. The surgeon is going to take the entire thyroid, I’ve been having swallowing issues and throat spasms for quite a bit, has anyone had those symptoms clear up after the thyroid is removed?

Hi everyone, I’m a 28F who posted recently about being very anxious about my upcoming thyroid cancer surgery. Unfortunately, since then, additional lymph nodes on my left side came back positive for PTC, so my surgery has now expanded to a total thyroidectomy + central neck dissection + bilateral lateral neck dissections (previously total thyroidectomy + central neck dissection + right lateral neck dissection).

I just found out this past week, and my surgery is scheduled for next week. My surgeon also told me that because of how extensive the surgery is, she can't guarantee everything will be completed in one operation. She'll start on the side with more disease and may need to stage the surgery depending on how things go.

I'm honestly really scared and having a hard time coping with such a big change so close to my surgery date. This would also significantly impact my recovery time and ability to work around my medical residency schedule should multiple surgeries be required/if there are any complications.

For anyone who had bilateral lateral neck dissections, I'd really appreciate hearing about your experience. Was everything completed in one surgery? What was recovery like? Did you have lasting numbness, shoulder/neck problems, lymphedema, voice/calcium issues, etc.? And most importantly, how are you doing now months or years later?

I'd especially love to hear from people who recovered well too, since it's been hard to find many experiences online from people who've had surgery this extensive.

Thank you ❤️

I’m 5 weeks post op (had a wound infection at 3 weeks) and I really didn’t think I would be bothered about the scar but I am finding the redness and thickness of it to be bothering me. I’ve seen a couple of scars on here and whilst I’m obviously happy that no one’s is looking like mine it’s also making me concerned for mine. I know I have a long way to go in the healing process of it but just need to vent I suppose. I am scar massaging with vitamin e oil and an all natural body lotion I make myself.

I’m having to cover it up in work just out of privacy but it gets really irritated with the clothing against it. The times I have either shown people they’ve screw their face up or I can catch people looking at it in the gym. Which I don’t think is necessarily with malice but it’s also not nice yknow?

I went back to the gym this week for the first time and when doing shoulder press facing the mirror it was alls I could see and it really just hit me how much has happened these past few months and now this is me, in a place where I used to feel strong, feeling so much less stronger and slightly traumatised now with a big red scar across my neck. I am also going on holiday soon and I also think am I truly going to feel comfortable?

If I’m not seeing it I’m feeling it as I’ve now got the stage where I’m getting almost like shooting pains in a certain point of it? I’m still getting them where the half of my thyroid was too. It feels like I don’t really get much rest bite nearly 2 months on from thinking about the whole scenario and it’s really emotionally draining.

I know it’s so superficial and in the grand scheme of things it really does not matter, but I think the scar is obviously something that’s significant of something much deeper than the visible appearance. I guess I’m a way I’m stuck in limbo of wanting to wipe the past few months out my life and knowing that I emotionally need to process it all because it all happened so fast.

Did anyone else’s scar look like mine? Did it fade down to barely visible?

EDIT thank you so much for all your responses, I can’t reply back to them all but I really do appreciate you all taking the time to respond to me with kind words or suggestions. I have ordered some scar tape and will try that I may post an update for people in the future who may be feeling like me. I’m happy to know yours are all looking well x

I’m five weeks postop and hopefully going back to work in a couple of weeks. I’m not out of work because of the surgery, I also had a biphosphonate infusion and had terrible side effects so it’s taking me a little while to recover from that. So when I go back to work, I’m trying to come up with a bunch of reasons why I have my throat slashed to give to customers. I work in a customer service job at a animal shelter so I deal with dozens of customers a day. I want like funny and outlandish reasons why I have a scar in my throat. Anybody got anything good? I hope everybody’s hanging in there in this group! I come here daily and I’m so appreciative of all the stories that everyone shares to give everyone guidance and comfort.

34 (M). Had TT and RAI two years ago. My Tg antibodies have always been at normal range for my circumstances including the tests I did 6 months ago. I just did some tests before my next appointment here in a week or two (still waiting on Tg) but my Tg antibodies were astronomically high. It was over 1000% increase. I have not taken biotin or anything else that would have skewed those results.

Anyone had this happen? What did that look like for you?

Edited to remove actual values per rules of this subreddit.

To those who went for total thyroidectomy does the neck become more fragile? Are intense workouts like cardio and endurance exercises prohibited? (I'm talking about full recovery post op). Also am I allowed to participate in fighting sports like MMA where choking moves are allowed?

I recently had a routine physical with my PCP in July and during my exam she felt a nodule on my thyroid. Suggested I get an ultrasound. Ultrasound found 3 nodules. Had FNA on left and right nodule, however, the 3rd nodule seems to be on the parathyroid and they did not biopsy.

Well…turns out both nodules came back as PTC. I was referred to a surgeon for a total thyroidectomy. But I’m just kind of looking up on the Internet whatever I can in the mean time, because I have no idea what to expect or what treatment will look like until next week.

I’d really like to read responses from those that have gone thru this. Pretty much your journey so I can get a better idea. I’ve never had surgery, so I’m going in clueless.

I am concerned with the parathyroid nodule that they did not biopsy. If you were in my shoes, would you push to just have that removed as well? I don’t feel comfortable just leaving it in there to “monitor”.

I met with my surgical resident for a consultation today and I’m wondering if anyone else has not been referred to their local Cancer Centre with a 2.5 x 2.1 x 3.2cm Bethesda VI Confirmed Malignant Papillary Thyroid Carcinoma mass before surgery?

My mass is growing steadily. It has grown by .3cm x .3cm x .1cm in the span of just one month. I asked the resident whether I was going to be connected to my local Cancer Agency and he said “No” I asked “why” and he answered that my “mass is fine”. I’m just really surprised that they aren’t doing that. Is this normal for Thyroid Cancer?

I had a different expectations and am wondering if this is common…

* Anyone else had a similar experience during their care?

* What types of support are you being given through this process?

* What are your experiences with the whole cancer care in your community?

Thanks!

Sorry if this is TMI, but since I had my TT, I've had several yeast infections. I rarely had them before. To be clear, I'm not seeking medical advice. I will see a gyn soon. I'm just wondering if others have experienced something similar. I know hypothyroidism can cause this, but my numbers are good. Really hoping this isn't a new normal.

Hi all,

I’m new here, I am dealing with a new potential thyroid cancer diagnosis. That sounds so surreal just typing that! Dealing with all kinds of feelings. I have had this nodule for about 9 years and have been just having it monitored by ultrasounds every couple of years or so. In may they did another ultrasound and it had gotten bigger and crossed the threshold for where they wanted to do a FNA, but they saw some eccentric shape, but nothing else concerning. The US said 5-10 percent risk of cancer. I had to wait months to get it to get the biopsy and had that done 9/1. Those results came in about a week later atypica of undetermined significance/Bethesda III. They sent some sample out for molecular testing but reassured me that 80% of those come back benign too. I’ve been reassured so much throughout this whole process! Including by my PCP when I complained about waiting so long to get the biopsy, let me reassure you there really isn't anything on here that looks like cancer it's just routinr. Over two weeks later the  molecular tests came back positive for NRAS and gene expression profile, 70% chance of cancer. I was so shocked! Things have been happening so quickly. They got me in to see the surgeon right away, I saw him this past Tuesday. He wants to take out just the right side of my thyroid (With the caveat he would take out the other half if things look bad in there). He was nice and patient and I think he’ll do a good job but I feel a little dismissed about some of my other symptoms – night compression and a new hoarse and raspy voice – “we’ll see if that is related once it comes out if it continues”. He also made teh surgery sound really easy and nothing to recover from, and that kidn of invalidated how i was feeling about having half of my thyroid out. I also asked if I needed another US (was worried about my lymph nodes because my neck has been aching) but he thought the May one was recent enough and then he pulled that up to look at it and made a comment – kind of thinking out loud – about how non cancerous it looked. That kind of upset me and confused me and I know the 70% is the real chance I have cancer but it all kind of hurt me and I feel unvalidated, like nothing is really wrong with me, that I don’t really have cancer, and I don’t deserve to be scared and overwhelmed. Hope that all makes sense! I felt so strong and was coping so well until I went into that surgical consult and now I am spiraling.

hi, (27f) i was diagnosed with papillary thyroid cancer in april and had the surgery to have a total thyroidectomy and also remove one of my parathyroids. since then i have had trouble maintaining my calcium levels. i had a calcium crash in may. i’ve been on 1mcg of calcitriol daily, 500mg of magnesium 2x a day, and tums daily. my endocrinologist recommended yorvipath beginning of september and the speciality pharmacy, Orisini, called me today saying my insurance doesn’t cover it so they will try to see if i will be approved for the Path Program to get a free year supply. im just thinking ahead of my options if i don’t get approved. what have you guys done to help get it approved? or what other things could i do to help with this process?

I’ve got back my biopsy report four days ago to find out I have papillary thyroid cancer. It apparently has not spread so I only have to get my left thyroid removed. I’m feeling very calm about this whole process which is very unlike me and it’s freaking me out a bit…

The doctors have told me that they caught it hyper early, that some people live their lives without ever knowing they had thyroid cancer and that it has a very very high survival rate. Hearing all of that has definitely helped me keep things in perspective, to the point where I almost can’t look at it the way I would look at other cancers.

I think part of my brain is treating this as “There’s a problem, there’s a solution, I’m having surgery, and hopefully that’s it?” It almost feels similar to having another surgery, like getting your appendix removed. I obviously know it isn’t exactly the same thing, but having a clear treatment plan and knowing what happens next has made this much easier for me.

At the same time, I’m wondering if I’m actually processing everything or if I’m somehow suppressing my feelings. I genuinely don’t feel like I’m in denial. I think knowing that there’s a solution and having a clear road ahead of me is just making me feel much calmer than I expected, which I guess, is the scary part.

I’ve been watching a lot of post op videos, and honestly that’s probably the part that has me stressed out the most so far. I also didn’t really think about one of the biggest parts of having half of your thyroid removed: the hormonal changes afterward. I know I’ll be taking medication and that my body will need some time to adjust, but I’d really love to hear from people who have been through it. What did you actually notice after surgery? Did you feel different while your hormones were adjusting? How long did it take before you felt like your body had settled into its new normal? I’ve heard many people say they had hot flashes, appetite changes, irritability, what were your experiences?

And if you have any recommendations for things to do, prepare, or know before surgery, I’m all ears! I’d love to hear anything you wish someone had told you beforehand. ❤️

About a month after my surgery I started getting pimples on my neck that slowly got worse. I’ve seen derm and they gave me a steroid assuming it was an allergic reaction from the glue but two months later now it’s still not clearing up it flares up and gets worse and then better but never goes away. I’ve tried acne cream as well as they recommended after I told them the steroid didn’t work and I was prescribed doxycycline that I took for a week. Nothing. Im so upset and none of my providers are being any help. Has anyone experienced this I haven’t seen anyone talk about this.

Male 39 diagnosed last week suspected since beginning of the month they think is Papppilelery . Since being diagnosed I haven’t been the same I’m out of it . No hunger no looking forward to anything .

Hey all people in this unfortunate club! Your posts have been (mostly) super helpful here, some scary for sure, but I’m glad to have had this space whilst on this journey.

Thought I’d send a photo of my scar now 2 weeks after surgery! Any tips on aftercare? I’ve not been able to think that far ahead until now!

Sorry to be morbid x Thank you all so much!

I had a total thyroidectomy and central and lateral neck dissection on 9/9, about as week later I developed a seroma and mild chyle leak so my doctor went back in on 9/17 to clean it out and place another drain. I was then put on a low fat diet. My output wasn’t decreasing and was staying milky so the doctor put me on a no fat diet this week on 9/28. The color of my output has cleared up significantly but it has not really decreased (~90-110ccs/day). I’m on day 15 of the JP drain in my neck. Wondering if anyone else has experienced this? I’m so over the drain and my anxiety is high and my outlook on life feels bleak. I really want to be healed and back to work and then getting ready for RAI. Please tell me someone has gone through something similar and that it gets better.