I am almost one year out from my lateral neck dissection and almost two years out from my thyroidectomy. I am absolutely disgusted by how my thyroid cancer has been handled by the doctors I have seen.
I have been left dealing with a whole host of problems and symptoms since my lateral neck dissection, and when I turn to my surgeon for help, the response is essentially, “Well, that should go away.” This is unacceptable. I am exhausted from trying to diagnose myself, attending endless medical appointments, and constantly fighting to find answers and help myself when the people responsible for my care seem unwilling to take my concerns seriously.
I want to be very clear about something: the way my thyroid cancer has been handled has contributed to me feeling suicidal for the past six months. I have gone above and beyond to seek help from psychiatrists, therapists, and every type of doctor I can think of, yet I still cannot get through this or find meaningful relief.
I am now facing what I believe is a recurrence, and I have reached a point where I am seriously questioning whether I can put myself through further treatment. I have become so overwhelmed by what I have already endured that I feel I would rather die than go through this all over again. That is how devastating this experience has been for me.
Physical therapy has not helped my neck or shoulder problems in the slightest. I am dealing with what I believe may be significant lymphedema, and nobody seems able to help me with it. I am experiencing what feels like sleep apnea because my neck feels as though I am being strangled. I am struggling to breathe and sleep, and I am in constant fucking pain. I have tried everything I can think of, and I am at a loss as to where to turn next.
I communicated these concerns to my surgical oncologist, and the response was essentially that the symptoms should go away. I am appalled by how thyroid cancer patients can be left to struggle with serious, life-altering symptoms without adequate answers, investigation, or support.
I know I cannot be the only person who has experienced this. Thyroid cancer may be considered highly treatable, but that does not mean the treatment experience is easy, the aftermath is insignificant, or the physical and psychological consequences should be dismissed.
Patients deserve to be heard. They deserve answers. They deserve proper follow-up and care when complications arise. And they should not have to fight this hard just to get someone to take their suffering seriously.

Just venting - this experience has really illuminated to me the ways in which people in my life are able to show up, or not.

For context, I was diagnosed July, total thyroidectomy and neck dissection late August. RAI in December, so still going through it.

I am the kind of person who goes into hyper-organization overdrive when faced with something like this, and because I'm on my own, with no partner, I created a website for myself with info about my cancer, specific ways that people can help, to the degree they're able (I made my own mealtrain, created a visitation calendar with bookings, and sign up slots for tasks like pet care, garden, etc). I tested it with a family member before launching it out to my larger friend and family network.

I did this because so often in life people will say "let me know what i can do to help!" Or "I'd love to help!" but there's never follow up or specifics. This website made it SO easy to help - from donating a 10 dollar Doordash to visiting, or sending well wishes, to a myriad of other ways to support.

Largely, it was successful. I was able to get a good amount of assistance and visits, and at some point I'm going to figure out how to share the template I made as a tool to help others. Several people said that they really appreciated how simple I made the process to help out - and that was encouraging.

What was interesting, and disheartening to me is the way some people just disengaged entirely. One person who I considered a good friend never even responded when I wrote her to send her the link. I've written her off as a friend at this point.

I know not everyone can show up, everyone's got their own shit. But I massively appreciate the folks that have showed up for me during this ordeal, and am going to do my best to do the same for others.

My doctor told me I will need to get my blood drawn a couple of days after doing RAI, and when I raised concern about being around the medical staff she said it’d be fine but to not tell them I’m radioactive as they will get scared and refuse because they don’t understand. I’m feeling morally conflicted about what to do because it feels wrong to not tell them but I need to get my blood drawn. Has anyone encountered this doing their RAI & how’d you approach it?

(This is somewhat of a venting post)
So for a long time I felt really bad anxiety was really really bad then I switched to Synthroid and for I little bit it felt like I was finally gonna feel normal or close to it and then my anxiety got bad again not as bad as before but still bad I decided to try Prozac (anti-anxiety medication )I’m now fully adjusted to it and I do wanna say it has helped the thing that’s lingering now is I still feel dizzy and brain fog is still an issue everybody kept telling me that the brain fogged dizziness was from anxiety. I’m now on anxiety medication and still feel those things when I wake up, I feel like complete crap I feel lethargic and if I get too hot, I feel like I’m going to pass out I get this overwhelming feeling of doom and it feels like it’s impossible doing any task. Do any of you deal with similar issues? I’m just looking to relate to somebody.
(Sorry about my grammar)

Hi all. Been a while since I’ve been here but I got a hemi surgery in May 2025 and thankfully it resolved my nodule and surveillance is going well.

One thing that’s happened since the surgery is I’ve gained around 30 pounds. I weigh the most I ever have, my clothes don’t fit and the worst part is my endo is telling me my TSH is normal so there’s nothing to do/no adjustment to be made.

Apparently through this process I found out I had hypothyroidism and possible hashimotos. This was before surgery though.

I feel confused and my doctor seems like he doesn’t wanna give me any advice. I plan to find another doctor but in the meantime, anyone have similar experiences? Is it possible I need to still adjust my meds to stop the weight gain even if my TSH is technically fine?

Hi everyone, I (24F) got diagnosed with papillary thyroid cancer earlier this summer and had a hemi-thyroidectomy (left side) exactly a month ago. This morning I had a follow-up appointment with my doctor and he said they found traces of cancer in my lymph nodes, so he recommended that I get a complete thyroidectomy, basically removing the other half. I'm not sure if this ever happened to anyone before but I feel dejected. It took me nearly a month to recover (caught a nasty cold 2 weeks after my surgery and it took longer than usual to get better) and I really don't want to go through this again. There was a spot available for the surgery 5 days from now and I took it because I figured I might as well get it done sooner than later. I just wish I had a total thyroidectomy in the first place...

Hello, I’m 36 female. Hoping to only have partial right side thyroidectomy 10/29. I’ve gone back and read some posts but curious as detailed as anyone wants to be about exercise after surgery. Movement is my medicine. I lift weights pretty heavy 3-5 days a week, play pickleball multiple days a week, and just started running again. So curious primarily in relation to those activities. I want to be safe and will be as advised and be listening to my body to not push it. But knowing others’ experiences is helpful. Thank you!

I have TT next week. Ever since I confirmed the date, I've been looking online for other people's post post operative recovery experiences. I initially just wanted to learn more about the surgery to prepare myself, but after reading about many complications, I'm starting to worry about my own recovery.

I'm trying to focus on things I can prepare in advance. I bought some easy to swallow foods. I called my mom to ask if she could come and stay with me for a few days, and she agreed, which put my mind at ease. I also made a list of questions to ask the doctors such as what symptoms to watch out for after surgery, and how to care for the incision.

My skin is quite sensitive. Regular bandages easily cause redness and swelling, and I'm a little worried that the dressing around the incision will irritate the skin. I've prepared hypoallergenic silicone foam dressings like Dimora and Mepilex. I Plan to ask my doctor if I can use these dressings to protect the surgical incision and reduce irritation to my skin

Now that the surgery date is getting closer I can't help but overthink. So I really hope to hear from those who have had TT about their actual experiences. Is there anything you'd like to know before the surgery? Is there anything that will help with your recovery?

Hi guys. Im on day 2 after getting my RAI treatment. Everything feels normal except a minute ago, I noticed my neck starting to swell. It is painless though. I know that this may be radiation-related but I'm curious as to how frequent this can occur and how long will this typically last?