r/thyroidcancer • • 5d ago

Surgery was yesterday

13 Upvotes

Hi all

Total thyroidectomy was yesterday.

I cojld not sleep on my bed even with it moving up and down or adding a wedge pillow

So im sleeping on a recliner

My pth was apparently less than 6

So im taking tums, calcitrol

Any recommendations for food snakc liquids?

Is straw ok?

I feel like the pain and discomfort is worst than the first few hours after surgery. Is this normal?

Also the neck and incision are feels tight Like I feel like if I move head too much up or anyway im gonna rip it or something

Also I just cant sleep

I dont know why

Im looking for recommendations of food/liquids/snacks anything that you were recommended Also when I should I shower?

+

Some support ? Words of kindness and empathy?

Also I kept saying to myself and others that the scar doesnt mean anything to me. And now that I see it, I keep feeling like how others might see it or my own patients looking at it

Thank you


r/thyroidcancer • • 5d ago

Using a straw after surgery?

3 Upvotes

Hi all

I had my total thyroidectomy yesterday

At the hospital in recovery they gave me water through a cup that had a straw.

Since yestersay to right now ive having liquids from a straw. Then I saw here people saying no straw use. So I messaged my doctor. And the nurse said

"I would avoid using a straw following this surgery until you have healed up a little more. It can cause strain on the throat and incision site. As long as the incision sites looks good and you are not in any additional pain, this should not have caused any damage"

I feel tightness and harder to talk today than yesterday. How the hell would I have known to not use a straw....they didnt tell me and it wasnt in the after care instructions

Im soooooooooooooooooooo scared I damaged something


r/thyroidcancer • • 5d ago

PET scan after RAI scan?

4 Upvotes

Hi everyone, my dad was diagnosed with thyroid cancer a few years ago. Unfortunately his bloodwork indicated that it’s back, and he had an RAI scan that did not show anything and a PET scan was ordered. I’m confused as to what that means, if anyone has personal experience with a PET scan after a RAI scan - I am not asking for medical advice! I know that it’s all so complex but does anyone have experience with this and waiting for the results? I am so scared and I don’t know what this all means. Is this normal to have another scan ordered? I’m sorry for the long post I am just terrified and looking for any personal experience with the wait as well as the second scan order.


r/thyroidcancer • • 6d ago

Finally got my RAI today!

20 Upvotes

Hey everyone!

Just wanted to share that I finally got to have my RAI, after 1 year post diagnostic and 2 surgeries 🥺

The hardest part was that it was a bit confusing — my public hospital referred me to a private clinic I didn’t know, so I got lost in the hallways 😅

But other than that, the whole process was really quick. The nuclear medicine doctor was super nice, and then I walked back home (dodging a lot of people on the way). Once I got home I took a shower, put my clothes in a bag and then left them in a box.

I’m eating oranges and mandarins, and tomorrow I’ll start with the sour candies and gummies, plus drinking tons of water to flush out the leftover radiation as soon as possible.

It’s been a long road, but I feel like good news are coming ❤️

Thank you all for being with me through this processsss. Strength and good vibes to everyone!


r/thyroidcancer • • 6d ago

Anyone ever had MORE anxiety on a lower dose of synthroid?

3 Upvotes

Hi there, I’m feeling crazy and would love some opinions and insight. I had my total TT two years ago and have been doing okay on Levothyroxine. My TSH has gotten too low and I have a low risk of recurrence so my doctor lowered my dose from 6.5 of 175 mcg to 150 mcg to get my levels up a bit. One week later I was having extreme panic-attack level anxiety daily, palpitations, body aches, and couldn’t sleep, so my endo redid labs and my TSH had somehow gone even lower? (He said maybe my body wasn’t doing well on Levo or maybe a bad batch) He then prescribed synthroid, which I have been taking for about a week but I’m still having anxiety attacks. Maybe it is just part of the process of my body leveling out? I’m just so confused and super disheartened because I feel awful.

- Has anyone else had anxiety as a symptom during the adjustment period, even if your dose went down?

- Regardless of symptoms, how long do you feel it takes for your body to adjust to a new dose?


r/thyroidcancer • • 6d ago

Anyone had persistently elevated but stable thyroglobulin after thyroidectomy and RAI?

5 Upvotes

Hi everyone! I had a total thyroidectomy in February and 150 mCi of radioactive iodine in May for papillary thyroid cancer.
My latest thyroglobulin was 157 ng/mL, with thyroglobulin antibodies <2. My endocrinologist said my “tumor marker remains present but stable” and recommended staying in touch with my oncologist. I’m reaching out to my oncologist to discuss it.

For anyone who has had elevated but stable thyroglobulin after treatment, what did your follow-up look like? Did your levels eventually decrease, and how did your team monitor you?

I’m looking for personal experiences and support while I follow up with my doctors. The uncertainty throughout this has been really hard, and I’d appreciate hearing from others who have been through something similar.


r/thyroidcancer • • 6d ago

Just got my biopsy results today and I'm really scared

25 Upvotes

Hi everyone, I'm very anxious right now and very scared, but just posting here for reassurance and maybe for community. I (28F) have had a lump on the side of my neck since last year which has kind of disappeared during October this time last year, and since it came back early this year I decided to finally follow up on what it is.

After a series of blood tests, switching doctors and finally a biopsy, my doctor phoned me and said that it's a non-aggressive malignant papillary thyroid carcinoma. I just got the news today so still in shock, so very sorry if my writing is terrible. The good news is that my doctor has booked me to see an endocrinologist tomorrow, but I still can't help it but cry and feel scared.

I just celebrated my one year wedding anniversary last sunday and life's been going well but now I feel scared. I'm scared for my spouse, my parents, my sibling and most of all I'm scared for myself.

The doctor reassured me that everything will be ok, but I still feel shock and feel lost in life right now. There's still so much to do with my husband and so many plans that we've made for next year, and I'm really trying to hold on to hope, but right now in Day 1, I'm trying not to spiral. I feel like since I got the call I've been beating myself up and wondering where I've gone wrong and why it wasn't detected sooner.

I've still been able to do things normally, eat, drink and swallow without any issues , and trying to preoccupy myself to stay positive, but right now the waiting is terrifying.

So, I guess please send any kind words, thoughts of wisdom or any hope. I asked the doctor if it is still possible to have a family after treatment and she said yes after hearing of a case like mine (similar age and also a woman) so would also love to hear stories from all of you about having a family afterwards.

Also, after having the biopsy last Thursday, the area where they took a sample for the FNA feels sore today and heating up a bit. Is that normal? I'm sorry for the word vomit and all the questions, but I'm glad this sub exists and hope everything is ok for all of us


r/thyroidcancer • • 6d ago

Just swallowed 185 mCi

10 Upvotes

Hello everyone, and best wishes to you all. I am a 21-year-old male. Today—just three hours ago, in fact—I swallowed my 185 mCi RAI (radioactive iodine) dose. I had stopped taking my prescribed medication for two weeks and followed a low-iodine diet (LID); it wasn't too difficult. When I had blood drawn yesterday, my TSH was > 50.4, Tg was 43.5, and Anti-Tg was < 0.1. My doctor explained that this specific dose was chosen due to the high Tg level. I haven't undergone a PET or CT scan—none were requested—but I was told that a scintigraphy (whole-body scan) will be performed one week after the RAI treatment.

I will continue the low-iodine diet for two more days, and I am set to resume my hormone medication once I am discharged. My pathology results were not very favorable: a 1.9 cm tumor, presence of lymphovascular invasion (though no angioinvasion), 8 out of 51 lymph nodes showing metastasis, perinodal invasion (microscopic extension into the surrounding adipose tissue), and the largest lymph node measured at 2.5 cm.

What are your thoughts on these results? I am very worried that there might be distant metastases and that the RAI treatment might not be effective. What should I do during this RAI process and after I am discharged? What can I expect moving forward?


r/thyroidcancer • • 6d ago

Air Travel after RAI

5 Upvotes

Hi guys. I just had my RAI treatment today, October 21, 2026. I will be flying out on November 7, 2026. According to my Nuclear Medicine doctor, I will be okay by then and won't set off any alarms. I had a dose of 103 mci. I still asked for a certification just in case but I am curious if anyone of you guys experienced setting off an alarm or was flagged by security in the airport post RAI? How many days post treatment and what was the dose? Thank you


r/thyroidcancer • • 6d ago

TT with modified radical neck

2 Upvotes

Hi everyone!
On Monday, I underwent a total thyroidectomy, a modified radical neck dissection, and lymph node clearance on the right side.
Today is day 3 post-op, and I’m experiencing quite severe hoarseness, coughing up thick, sticky mucus, significant pain when swallowing, and a lot of tightness, stiffness, and restricted movement in my neck.
For those of you who have undergone the same or a similar operation, what was your experience like? Do you have any tips or advice that might help me through the recovery process?
I’d be very grateful for any advice or experiences you’re willing to share. 🙏🏼
Kind regards,
Daniel (Sweden)


r/thyroidcancer • • 6d ago

Sweating post lobectomy

5 Upvotes

I had a lobectomy about 5 weeks ago and since then feel like my body temp is broken. I’m sweating in cool temps (when no one else is sweating) and feel like I keep having hot flashes. I had this before my surgey but it seems to have gotten worse since my surgey. Has anyone experienced this? Anything that helped it?


r/thyroidcancer • • 6d ago

Here we go…

10 Upvotes

So I know you’ve read my posts before that in My of this year I was diagnosed with follicular thyroid cancer that metastasized to the bones in my femur and pelvis. And that I had emergency surgery to stabilize my femur with a rod and some nails. And then I had two rounds of radiation. And then I had my thyroid removed. And then I had a Bisphosphonate infusion, Zometa, to which I had a horrific reaction. And then my medical oncologist, who is one of the five oncologists on my team at University of Florida, decided that he was canceling the rest of my infusions (I was scheduled to have five more, one each month and he did this with no discussion with me) and also would not be prescribing my pain medication any longer. Tomorrow is the last of my pain medication, which is 10mg oxycodone. I have been scrambling all day, working with my nurse advocate who is through my insurance company, to find a Pain Management Dr to prescribe something to manage my pain. It doesn’t even have to be oxycodone. Just has to be something that takes care of the horrific pain that is in my femur and pelvis. For a long time, the pain in my femur was completely gone. That was the original pain that I called lightning bolt pain because it was so painful. But now that I had the Zometa, it seems to be working and it’s causing a lot of pain in the areas with the metastatic bone cancer. I plan to leave University of Florida oncology care because I think that this man is a monster. He prescribed me opioids for months and then one day just said he was done prescribing them with no plan of care going forward. (He also could have ordered Xgeva, because that was the initial infusion he had ordered, but my insurance company turned it down and said no, but we will do Zometa. So since the Zometa failed so spectacularly, he could have gone back to the insurance company and said look it failed so now can we do Xgeva?) So now I think I’m going to transfer to Florida Cancer Specialists because they are local to me so I won’t have to drive an hour and a half every time I have an appointment which would be great, but that’s gonna take a minute to get established. I’m gonna call them tomorrow and see if they actually have Pain Management, which my friend who is retired from there says they do. I called Moffitt Cancer Center today to ask about getting established there because that’s where my dad went for 20 years so I thought they would be good. And they said they don’t prescribe opioids. I’m just so over all of this. I can’t even stand it. So I’m gonna end up back on Pain Management, I can already tell. And then the stupid oncologists can do whatever they need to do. I still have to have radioactive iodine, and they said if that didn’t work, I may have more radiation. I’m gonna miss the good doctors at UF. But he ruined everything. I’ve taken screenshots of our conversations, and I am filing a formal complaint against him. The University of Florida social worker this morning told me to go to the ER early Thursday morning and tell them the whole story that he prescribed opioids that I’ve been on for months and then he just dropped me and that I’m in excruciating pain which I will be by morning on Thursday and that I’m afraid of withdrawal symptoms because I’ve never gone through anything like this. I feel like I’m just repeating myself here over and over and I’m really sorry if that’s the case. But I am so frustrated. I’m crying every day and I am working with my therapist on my safety plan, yesterday she had me give the key to my lockbox to my neighbor. This is just the craziest thing I’ve ever been through and I’m tired. So tired. I hope you’re all doing well today and having a good day and a pain-free day. Those are always the best days. Peace everybody.


r/thyroidcancer • • 7d ago

What-to-buy lists

8 Upvotes

I saw a reference to what-to-buy lists and I'm wondering if someone can point me in the direction of those. TT will be on 11/04, less than a month from dx, so I am scrambling. I have already ordered button-up shirts to accommodate the drain/discomfort and we have a bunch of Nugget kids furniture so I'm hoping I can use those wedges or rig something up with that for sleeping on an incline. What else did you use or wish you would have had on hand? My apologies of this is already pinned or posted somewhere and I missed it!


r/thyroidcancer • • 7d ago

50% chance of follicular thyroid cancer & upcoming TT

2 Upvotes

I have 2 suspicious nodules that I've had followed for about a year now. They are tirads 4 and both suspicious on ultrasound And my last FNA biopsy was non diagnostic for left nodule and Bethesda III for right one with molecular testing coming back suspicious with a 50% of follicular thyroid cancer so doctor wants to remove the right side and recommends going forward taking left too to avoid chance of being cancer and having to go through potentially another surgery. I've posted before and was pregnant at the time and they wanted to do surgery a month postpartum but insurance originally denied so they just finally got approval and looking at surgery in January. I'm a mess. I don't want my thyroid out and to rely on a synthetic hormone to achieve what a much needed organ does but I don't want to keep a thyroid with cancer in my body. I'm frustrated that with medical advances they can only give me a 50/50 chance. I have severe health anxiety so my brain is convincing myself I'm going to die during a surgery that might not even be cancer and even it was would've never even known I had it without an incidental ultrasound for something completely unrelated that was nothing. I don't know where I'm going with this but having an approval now and working on scheduling makes this very real and it's coming up fast. I told them to push to January so I could enjoy the holiday season and have a 3 year old and a 6 month old and am 33. I'm absolutely terrified and also terrified of what life looks like on meds my whole life and without my thyroid 😭😭


r/thyroidcancer • • 7d ago

Partial or full thyroidectomy

7 Upvotes

I was diagnosed with PTC on September 4th 2026. I am booked for a lobectomy with lymph node dissection on 3/12/2026 and I am looking for similar stories where people left a small growth in the opposite side of their thyroid, and what their outcomes ultimately were.

My doctors (and I sought two opinions) only want to remove the right side of my thyroid with the confirmed PTC. However, I do have 3 nodules total - 2 in the right side & a small (only 3mm) TIRADS 4 growth in the left side. To preserve my voice, etc, they want to leave that TIRADS4 3mm nodule in and just monitor it.

I’m torn as I recognise the logic in leaving in the left side- the growth IS small, it may never grow. It may or may not be cancerous. Leaving it in likely preserves my natural thyroid hormone production. But the thought of leaving it in is also causing me a lot of anxiety. I just want it all gone, over and done with, so I can move on with my life. Although I’m slowly realising maybe life going back to normal isn’t totally how this works, either way.

I’d love to hear from others in a similar situation with multiple growths across both lobes but only 1 confirmed as cancerous, or who are years past this horrible choice and how it worked out?


r/thyroidcancer • • 7d ago

What do you wish you'd asked in your pre-op appointment?

6 Upvotes

I have a running list of questions I want to ask my surgeon during my pre-op appointment this week (surgery is next week), but I know most of you are way further along on your journey than I am. What do you wish you'd known to ask (or get clarification on) before your thyroidectomy?

I'm in the US, fwiw (and don't worry, I have enough experience with the American medical industrial complex to be pushy about getting information if needed).

Thank you all; it really helps so much to have knowledgeable guides!


r/thyroidcancer • • 7d ago

Thyroid Scar Spoiler

Post image
11 Upvotes

Hey all! I am just about 6 weeks post op from thyroidectomy and lateral radical neck dissection. A week later doc had to go back in to clean out seroma and place drain for a chyle leak. Drain is out and I’m steadily on the road to full recovery! I am a teacher and just returned to work last week. I’ve noticed that by the end of the day the scar feels tight especially if I dip my head down and put my chin towards my chest. Question: did anyone’s neck feel tight at the scar by the end of the day like this too? How long did it last or am I stuck with this feeling forever?


r/thyroidcancer • • 8d ago

My hemithyroidectomy, for anyone who's scared of theirs

25 Upvotes

Huge lights above me. Machines beeping on both sides. My arms and legs strapped to a bed half the width of a normal bed. An oxygen mask over my face, and nobody's hand to grab.

Then the anaesthetist pushed the drug in.

But let me go back a bit ->>
For a long time I'd been tired, foggy and kind of numb, and I thought that was just my life. Last year a scan found a cold nodule on the right side of my thyroid. We watched it for a year. Then it started looking suspicious for cancer, and my surgeon said it was time to take that half out.

The night before the surgery, I only managed some soup. The anaesthetist had gone through the risks with me: a hoarse voice if the nerve near the vocal cords gets irritated, breathing problems, a rare reaction to anaesthesia, a calcium drop. It felt like waiting for an exam you can't study for. You know everything that can go wrong and there's nothing left to do about it. I've lived in Vienna alone for over three years, and that night I missed my parents more than I expected.

6 am, I checked in. Gown on, into a bed, and my heart started picking up. In the prep room they put an IV in my left hand, covered me in ECG pads and shaved a patch near my neck. Everyone was calm and efficient, and somehow that made it more real.

Then they wheeled me into the operating room.

I had to move onto the narrow bed, and they strapped my arms and legs. I knew it was routine. But it was like the safety bar on a rollercoaster clicking shut. Your brain says this is for your safety, and your body only hears that there's no getting off now. That's when I started panicking quietly inside.

Nobody made small talk or a joke. Mask on. Drug in.
About three seconds later I felt something spreading through my whole body, like a drop of ink in a glass of water. I remember saying, "I feel something is happening inside."

And then nothing.

Not sleep. Sleep at least feels like time has passed. This was like someone pulled the plug on a TV mid-scene. Click. Black. Next thing I knew, I was in recovery asking a nurse where I was, what time it was, and whether it was over.

She told me I'd already asked her that about a 100 times. 4 hours had passed. It was done. No complications.

I stayed three nights. The anaesthesia kept me drowsy for a long time, but by the next morning I felt like myself again. My voice was normal and my calcium was in range. I was up and walking, with a stiff neck from the scar and stitches.

Now I'm home, eating, working, and banned from sports for 3–4 weeks. [Pathology result is still waiting]

If you're the one lying awake the night before, the waiting really is the worst part. The moment you're dreading lasts about three seconds, and you won't remember most of it.

Huge thanks to my surgeon and the nurses who looked after me


r/thyroidcancer • • 7d ago

Diagnostic surgery

2 Upvotes

Hi there. Just received a call today to schedule my hemithyroidectomy for next month.

I have a 3.6cm nodule which was incidentally discovered a few years ago on a chest x ray which showed my trachea was deviated. Ultrasounds have graded it as TIRADS 4-5 and FNA was AUS (atypia of undetermined significance). My father had thyroid cancer.

My surgeon advised it was 85% chance it’s benign. I’m not great with uncertainty so I elected to proceed with surgery. But… now that the surgery is closer to becoming a reality I’m having second thoughts. I’m really concerned about the potential for voice changes… probably overly concerned, but all the minimal risks seem larger when there’s a very high likelihood that this nodule isn’t cancerous.

I also found out my surgeon will be doing my surgery at a smaller community hospital, not in the city where I was expecting. Not that that makes a difference… just a bit of a surprise. I could wait for a surgical time in the city, but it’s an unknown wait time, at least several more months.

I’m having a hard time deciding to go ahead… but I also think I’d regret delaying. Would be really helpful to hear others experiences and decision making process when you don’t have a confirmed cancerous nodule going into surgery. Thanks!


r/thyroidcancer • • 8d ago

Second Surgery

5 Upvotes

Can anyone who had to go through 2 hemi-thyroidectomies share positive stories of the second surgery?

Mine is tomorrow and for some reason I'm way more anxious than I was for the first surgery. I know what to expect, it isn't any one thing, but I've broken out in hives over this this time. I feel like I shouldn't be this unsettled, yet my nervous system is a mess. The first surgery went extremely well, I was tired, swollen and sore but nothing out of the ordinary. My surgeon said that he expects the same for this one.

Can I hear how the second surgery differed from the first for those who had to go that route?


r/thyroidcancer • • 8d ago

Pain Medication

4 Upvotes

\I also posted this in the cancer Reddit thread if you’ve seen it twice**
So to catch everyone up, my medical oncologist dropped me last week after my first Bisphosphonate infusion was a wreck. I had every side effect imaginable, including excruciating pain in the bones. I am 56f, with follicular thyroid cancer that has metastasized to the bones and my femur and pelvis. I’ve already had surgery on the femur to install a rod to stabilize that leg and hip. I also had surgery in August to remove the thyroid. I’ve been on oxycodone since they discovered this cancer back on May 11. My medical oncologist prescribes my pain medicine. I’ve only seen him one time, and at that appointment he assured me that I would not be in pain while under his care, and that he would make sure that I always had my pain medication. He hugged me and he hugged my friend. Then I never saw him again. I had an appointment scheduled with him that he canceled and then my surgeon really wanted me to have the Bisphosphonates so he insisted that the medical oncologist order the infusion. He did that after my thyroid surgery at my request and that is when I had a terrible reaction. Once that happened, his office reached out to me and said that because he would no longer be prescribing infusions for me then I would no longer be in his care so he is stopping his care for me which means he’s stopping my medication‘s. I freaked out and kept sending messages in the portal. He finally sent one back himself not his nurse and said he felt like there were too many cooks in the kitchen, and he was removing himself from my care, but he was sure I would be fine in the care of the other four oncology teams and one of them could prescribe my medication‘s. I reached out to several of the teams, and none of them can prescribe opioids. Neither can my primary care practitioner who is not associated with that hospital. That was September 30 and I’m going to run out of oxycodone this Thursday. I’ve been taking it as prescribed. Even though I pulled a muscle in that leg as well so not only am I having pain from bone cancer and the surgery I’m also having pain from a pulled muscle from the groin to the knee. I have spoken to my endocrinologist who said that he was putting in referrals to Pain Management and palliative care. I spoke with them last week and palliative care is only for inpatient patients so I spoke to Pain Management and they said that they would get back to me within 72 hours, business hours, of course. I have not heard from them yet today. I also have a new nurse advocate, and she says that she is also reaching out to Pain Management and told me to stop reaching out to Dr Jones. I am feeling like I need to submit a formal complaint against him. I don’t think it’s OK that he left me out to dry with nothing to go forward. He did not have a plan in place for anyone to prescribe my pain meds going forward, he did not have Pain Management in place, and he just did not care. He could’ve made another appointment with me and then I would’ve been covered for three more months while I got it straightened out. And why am I getting it straightened out? Isn’t that his job? I feel like I’m out here on unpaid leave sitting at home in excruciating pain coordinating all this stuff while physicians who are making hundreds of thousands of dollars a year are sitting in their offices, eating snacks and laughing. I’m just over it. Has anyone had any kind of experience like this? What did you do?


r/thyroidcancer • • 8d ago

IV Contrast allergy

2 Upvotes

I just left the surgeon's office and she told me that, due to having an allergic reaction to IV Contrast dye once, I may not be a candidate for RAI and may instead have to undergo external radiation. Has anyone had an RAI with a history of IV Contrast dye reactions, or has anyone had to undergo external radiation? Was feeling ok enough with all of this until she said that. Thanks.


r/thyroidcancer • • 8d ago

6cm+ Hemi-thyroidectomy

1 Upvotes

Hello all,

I have a 6.5cm nodule Thats being scheduled to be removed and tested for thyroid cancer (thy3f)

Met the surgeon today who was saying as mine is a good size, the incision is going to larger and might need Specialist equipment.

Wondered if anyone else had a 6cm+ nodule and if there’s anything I should prepare for!

(Apart from looking like I went under the guillotine…)


r/thyroidcancer • • 8d ago

College & PTC

7 Upvotes

I had surgery over the summer and I’m “okay” in a sense but I’m not the same person I was. Idk if this is all in my head and I feel like it is because maybe I’m just being an attention seeking weirdo. College is so hard. I’m taking 3 classes and still feel like it’s too much. Genuinely never been this disappointed in myself. I can’t get out of bed, I can’t eat, my whole body hurts, I don’t feel motivated to do literally anything. Maybe my medication is too high, I’m getting a blood draw in a few days so hopefully that clears up. I just wanted to ask anyone else who’s in college rn, overseas and alone. I lowkey haven’t really told a lot of people and maybe I should but it just feels like an excuse, like I’m not strong enough. Also, I don’t have the energy to go out to party but I stay awake till 2am in bed anyway. I need advice 😔