man what a year it’s been… the fight doesn’t stop
fuck cancer

I had a PT end of Aug that came back follicular carcinoma widely invasive. I had my other half removed 2 days ago that went out for testing.

Wondering what to expect in terms of RAI. I was told there’s a chance I won’t need it but we can’t be certain until I get the results. If they come back clean I’m under the impression there’s still a chance I’ll need RAI to be safe. Also wondering what follow up scans look like and all that with follicular cancer as the spread is very different from what I hear.

Just looking for personal experiences to wrap my ahead around what to expect! Thanks

I got my pathology report back and I just had my appointment with my ENT surgeon.

1. The cancer was on both sides of my thyroid. We had initially thought it was only on the left side.

2. The cancer was encapsulated within the thyroid.

3. He removed six lymph nodes and none of them had cancer.

4. He told me that they will probably recommend radioactive iodine.

This wasn't the news I wanted because I have a 3-year-old and we want to try to have another baby soon. I'm pretty upset about the possibility of needing radioactive iodine. I thought I would be safe from needing it because it was encapsulated within the thyroid and had not moved to any lymph nodes. I have an appointment with my endocrinologist on November 10th and he will be able to give me more info than. What do you guys do when you have young children and you have to have radioactive iodine? I'm a 34 -year-old female and I'm worried this is going to mess up my fertility as well. I'm trying to look at the positives but I'm still really sad.

Has anyone had luck getting life insurance after thyroid cancer? I'm a 43 year old guy with 4 kids under 6 years old, and I'm getting life insurance quotes of $3500+ per year for term life. Fortunately, I have group life through my work, but it isn't as much as I would like in terms of coverage.

I just had my surgery yesterday, the doctor said they removed half of my thyroid and lymph nodes didn’t seemed suspicious i had another nodule on my other lobe but the doctor said since it was too small but embedded inside the thyroid so he didn’t wanted to remove it. Now i have ten days to wait for pathology results and after that we will keep monitoring the other nodule to see if i’ll need another treatment or surgery.I feel like my main mission is to stay stress free.I had terrible anxiety for my work my family and even for simple things,but when i got the diagnosis literally nothing mattered so i don’t know if i am cancer free yet but i am sure stress free.

First 10 hour after surgery i think it is the worst the nausea from anesthesia the constant requirement to keep the head straight position and pain in the neck and throat on top of that i had my period! But the painkillers did double work it was like two birds with one stone. Knowing all these hard times are temporary and keep reminding this to myself helped me a lot. So if anyone reading this and feeling at lost, just know it is all temporary,good things and bad things they will come and they will go so just try to enjoy even the simplest and smallest moments of your life. 💛

30F PTC with hemithyroidectomy a year ago. Went in for my first annual ultrasound and “complex” lymph nodes noted, so they’re recommending a FNA 🫠

Is it like this every ultrasound until an eventual completion surgery and RAI? The frequent testing is unnerving, just trying to set some realistic expectations

After TT, dealing with Constipation with normal TSH and T4. Anyone has same issue? It’s very frustrating

Hi everyone, hope you’re doing well.

I had surgery for PTC about a year ago, two nodules, one on each side - total thyroidectomy.

Months after it they found a suspicious lymph node on US and decided since I’m intermediate risk I should have RAI.

My tg is finally dropping along with my TSH - started with 12 and 16 respectively, down to 1 and 4.4 now - still far from where I should be.

There are delays with the Iodine delivery in my country and because of which my RAI was rescheduled from October to December, basically a year after my surgery.

I’m just being fearful of those delays and if its gonna cost me my health so I’m just looking for opinions (not medical advice) on if such delays affect the outcomes and effectiveness of those treatments. My oncologist said she doesnt believe its gonna affect it too much, but still, in the position we are all in you can’t really gamble.

I’m in the UK and I’ve been in this feed for about 18 months since I found out I had a nodule on the right side of my thyroid. I had to lose weight before surgery but got there and had a hemithyroidectomy on the 18th of September.

My results have come back and it was tall cell papillary cancer, they’re going to take the rest of my thyroid out and then do radioactive iodine treatment.

I’m wondering what people’s experience has been of having a second surgery so close to the first (my completion surgery is on the 6th of November) and what the radiation treatment was like?

I have the wonderful benefit of being able to hire a nurse advocate through my insurance company. I hired one way back in May when they initially found tumors on my femur and pelvis in the ER and admitted me; they then did surgery on my femur to install a rod and some hardware to basically stabilize my hip and leg because metastatic cancer had eaten away at a lot of the femur and pelvis. Turns out I had follicular thyroid cancer that had metastasized to those areas. So while I’m going through all of that I came across a benefit that said I could hire this advocate and that advocate would then help me. Make sure that I’m covering all my bases and not missing anything and making things easier for me. Fast-forward to now, five months later. I can count on one hand the times she has helped me. She almost always was only available after 5 o’clock like right after five she would answer any text I had sent her. (so I feel like this was her second job which I can appreciate but come on do it well please). She never actually gave me any proof that she had ever spoken to any of my doctors, nurses, or teams. And after my second surgery, where I had my thyroid removed in August, I was asking for specific services for her to coordinate my Pain Management because my medical oncologist resigned my case and left me with no plan going forward. Now we’re in October and she still has not done one thing that I can see that she has done. I asked her a few weeks ago if she could find me a new advocate as it didn’t seem like we were a good fit. She told me that she was undergoing some health problems herself and she was very sorry so I let it go and said I was sorry that she was going through that. She promised everything would get better. Then the next time I needed something her Wi-Fi was out and her communication with spotty. So I let that go. Finally yesterday I just said look it’s just not a good fit. Can you get me a new advocate please?? I have my first meeting with my new advocate on Friday but by now I have already coordinated all of my own care. I did a video on TikTok this morning where I described coordinating care for myself for all of these medical professionals who are making hundreds of thousands of dollars a year and I’m at home on unpaid leave making sure everyone’s ducks are in a row. American Healthcare really really really sucks. I hope everyone is having a wonderful Wednesday! Sending healing vibes and love and light to everybody in this community! 💜🩵

Entire thyroid is being evicted in late December - Merry Christmas to meeeee! Really hoping I won’t need RAI, though the odds aren’t in my favor per my biopsy, but we’ll cross that bridge later and I’ll be back for more advice then 😅

After meeting with the ENT/surgeon doing my thyroidectomy, I do feel more at ease - she’s SO awesome. But, we’ve been so busy lately it’s been easier to ‘ignore’ it and not end up in a mental spiral 🤘

I started a new job last month, we have 3 kids under 5, it’s all just…a lot to process still. I also have hashimotos so my thyroid being gone is likely going to make things better for me but I know it’s just not that simple either.

Open to all advice, recovery pro tips, personal experiences, someone else’s experiences and/or any ‘must haves’ for the procedure and recovery.

Thanks ✨

I got my TT + CND in april

RAI in june & and 175 thyroxine started

I lost weight rapidly after this in 3 months 5 kg down ( tho i had started a clean diet + workout for the first time in my life)

Got crazy hairfall but good skin

Now about 6 weeks back my thyroxine changed to 150Mcg

I'm having some bad symptoms

- MOST IMPORTANT ONE IS body heat

I'm not sweating but my body always feels it's on fire i can't stay with AC and in night even in AC my body feels like burning as hell that i woke up and got into cold shower immediately last night around 3am

Apart from this I'm having crazy acnes maybe because of body heat

Insomnia

Crazy appetite increase

Breathing problem ( i had this when i was doing LID but after starting 175 i was feeling better but it came again now)

Feeling lethargic all day

Tho i have stopped working nowadays but my diet is still clean

Skin is getting darker

Tho hairfall has completely stopped

Took my pill 9:30 Monday morning and they said 2 days then return to normal diet. I’m a classic over thinker and I’m also starving right now in combination of being SICK of low iodine meal prep so I’m like I wonder if they meant 2 days as in Thursday or two days like 48 hours?
**not literally asking if I should eat a normal meal btw**

Just bored in isolation making conversation wondering when everyone ate normally for the first time after their pilling and what was the first thing you had??

I’m an avid coffee with cream and sugar drinker to the point drinking it black isn’t worth it to me and I haven’t had a cup in weeks. I cannot wait until tomorrow even though it’s probably about to tear my stomach up lol

Early September I was at a Dr app for my father and the NP noticed a bulge on the left side of my neck.

Within a week I was having an ultrasound that resulted in the discovery of a 3.4 cm nodule rated at a TR5. A week later I was having a core needle biopsy. Results were inconclusive, with the recommendation of a hemithyroidectomy to send it off for further testing. Apparently they cannot tell if it’s benign or follicular thyroid carcinoma.

Today at my endocrinologist appointment he gave me two options. Do another biopsy but this time a FNA, or just get the surgery to remove it. The catch is I would have to wait until January to have this second biopsy and am told if it comes back inconclusive again that I would need to have the nodule and half my thyroid removed.

I’m leaning towards just having it removed because but I would like to hear others opinions and or experiences. I’m scared and I don’t feel like my situation is being taken seriously enough.

I’m looking at a possible recurrence. 15 years ago TT followed by RAI and WBS. Bi-annual bloodwork and annual ultrasound. NED until 6 months ago; my levels went from negligible to 3.4, six weeks later 6.2 so Endo increased my synthroid. Two weeks ago my level is just over 9! I’m stopping all multivitamins and will repeat bloods in 3 weeks. For something that’s supposed to be slow moving, this was a substantial jump.
I also have Crohn’s and the only thing that has changed with that is a change in my biologic drug so I’m going to reach out to my GI and see if they’ve seen any instances where my new drug can increase thyroglobulin levels.
I’m sure how to react at this point. Nov. 3 I hear back on my blood results

I had my original surgery on September 22 to remove my left lobe of my thyroid and a huge nodule.

There was a second operation on October 2nd to remove a build up of fluid. They had to make a smaller incision along the original one to place a drain.

The drain was removed on the 7th.

The whole area that was cut is still so sensitive, with the drain spot still few raw.

Today I took my dog for a walk vigorous walk for the first time since I had any surgery.

It was warm and I got all sweaty. Now my entire incision is on fire from the sweat.

The incision looks like a black line drawn across my neck.

I’m seeing a physician assistant tomorrow and will be bringing it up, but really how long is it supposed to last?

The surgeon made it sound like I’d be all healed up by now 😕

I was diagnosed with thyroid papillary carcinoma, Bethesda VI on 9/25/2026, met with the endocrinologist 10/7/2026, will have another scan on 10/28/2926. My endo doesn’t schedule surgery until results are back from the second scan and right now she’s scheduling end of January 2027.

I know this is slow growing, blah, blah, blah …. But doesn’t that seem like a long time? Just knowing I have this in my body makes January/Februray seem like a long way off!

How can I get myself regulated until then?

Hi,

I wanted to find out how long it took someone for to have recurrences and what was the size of the largest nodule that formed/found?

I had a case of few 2 cm nodules after 2 years with braf/tall cell mutation

My radioactive iodine is scheduled for January. I have a 6month baby so husband and baby will be leaving and staying elsewhere for 10 days. Post isolation, what were your initial, or even down the road, ide affects/symptoms? My mom is wanting to come to help take care of baby afterwards in case I feel sick, tired, etc. So we are looking to see what others' experiences were. How did you feel?

A question to anyone who had the hurthle cell version. Did you have a reoccurrence if so how long after the initial cancer?

What levels do you start worrying about calcium? What was your experience like?

I’m in the hospital still praying I can go home but my calcium is on the low range

Is there any tall cell PTC folk here, without any recurrences since their first diagnosis.. and if so then for how many years have you been in remission? How are your monitoring protocols now? Any kind of response will be appreciated!

Amazingly on the same day that I got Axa healthcare at work, I got told that I need to have half of my thyroid removed to see if I have cancer

I have a 6.5 cm nodule u3 on the right side of my thyroid, and the biopsy came back as thy3 f

there’s a two month waitlist which I think is pretty good, and I really like the consultant I met for the NHS. In fact I think they’ve been pretty amazing apart from the first scan I had missed all of this. It was only when I went for the second that things got flagged up and people started getting concerned….

Anyway, I’ve not really used healthcare privately before and I’m not sure if that’s the route I should go down.

I’d love any advice or experiences

If it does turn out to be cancer, apparently I have the enhanced council package with access so I think that would be pretty good.

However, if I did experience hypothyroidism or have calcium issues as a result of the surgery that would be classified as a chronic condition and wouldn’t be covered with private, so I hope that the NHS would still treat me.

I’m almost wondering why I would use private, and I think the cancer bit would be good

The surgery bit I think the NHS will be greater as well and it sounds like it’s the same consultants.

I really don’t know what the best option is

I had a full TT, neck and chest dissection to remove 49 lymph nodes/nodules about 3 months ago which came back positive for PTC in about 26 of those. I have also been told I tested positive for a BRAF mutation? Still trying to understand the meaning of this but anyway.

I have only just had a consultation for RAI and they can’t get me in for treatment until MARCH. I’m in QLD, Australia and turns out this clinic isn’t just the only one in Queensland for public health, it also serves private healthcare system. Despite being the highest category, this is the earliest they can get me in.

I’m feeling scared, defeated and just overall let down by a system. My TSH levels came back relatively low which is good to hear but it just sucks because I want this to be over. March will be a year since I found out.

So I had surgery to remove my papillary cancer on my right side thyroid. I’m in week 4 post surgery with pains still and was wondering if anyone else had pains for this amount of time post surgery or even longer. Because it’s been 4 weeks I feel like I’m behind in my recovery but after researching i get that it’s different for everyone and 4 weeks is still early into recovery. But I wanted to see if anyone is in the same boat as me as I have to go back to work in a week as a driver and I’m feeling a little discouraged… a doctor gave me muscle relaxers and a referral to physical therapy but the closest appointment isn’t until next month so I feel stuck. If anyone also has tips on anything that helped your recovery is also very helpful and encouraged :)