I had thyroid cancer two and a half years ago, so...ask me anything you want.

The most common forms of thyroid cancer are very slow acting and it is unlikely to spread beyond maybe the lymph nodes. They have to check, but the odds are against it.

The most common forms of thyroid cancer have very high cure rates and actually, if they are talking radioiodine, then it is one of those forms you are dealing with as those are the ones that respond to radioiodine.

Radioiodine therapy, by the way, is basically just taking a capsule. You have to remain in hospital as you are radioactive and they want to ensure you don't come into contact with people who might be vulnerable to that or anything. So it's kind of annoying, but it doesn't affect you in any way. OK, I had a nosebleed 10 or 11 days later and googling said that was probably a side effect but that was the extent of the effect it had on me.

If you've already had a full thyroidectomy, then...the main part of the treatment is done. The worst is over and it's really just about ensuring it doesn't reoccur now.

Thank you so much for your reply which I have found comforting. I have been so frightened since I have been told I had cancer but agree that the thyroidectomy has already happened and the worst is over.

Can you advise what I can do to stop it from returning .

Thank you xx

That is what the radioiodine treatment is for, to reduce the risk of recurrence. And obviously take the thyroid medication as prescribed. I think they adapt the dose to suppress something that also helps to prevent recurrence.

It probably won't return. The odds I've read go up to 20% but I think radioiodine and all might reduce that further.

You'll also probably have scans of your neck maybe once a year so they can check for signs of recurrence.

And yeah, it's shocking to hear "cancer" but the odds are it won't change much for you going forward.

The nurses probably can't give you much info until your case and results are discussed. My breast cancer nurses were lovely They were very reassuring. Not surprised you are sore and worried. It's not a nice time waiting for results. Poor you, are the medications helping? rest if you can  and look after yourself I am sure your team will do the best they can for you.

Wishing you all the best

Silver 

Hey I hope your feeling OK and I hope you don't mind me asking how long has the process been for you from  day 1 to your surgery? I to need a full thyroidectomy after been diagnosed with Papillary thyroid carcinoma my problems started 11 weeks ago and I still haven't had a date for surgery.

Oh god really it seems like a very long time to wait it must depend on were the cancer is. I only got diagnosed on Tuesday after 10 n half weeks of waiting between referrals scans and biopsy results coming back I was told my results were thy4 on the phone went in Tuesday to discuss half my thyroid been removed to be told they had upgraded my result to thy5 and I'd need full thyroidectomy. I had a staging ct scan done Friday so waiting on results for that and need a core biopsy done on the actual lump that i had found because that was indeterminate so if that is cancer to I'm gonna need a neck dissection too. I don't go for that for another 4 weeks then its waiting on results again before a surgery date I think I'm looking at least October at the earliest. Its worrying incase its spread much because I dunno how long this has been going on without me finding the neck lump I was non the wiser. 5 years or more wow and did you not have any symptoms prior to when the investigation started? how are you now?

Papilary thyroid cancer very rarely spreads outside the neck. It's only something like 1% to 4% of cases that do. And it is very slow acting. I was told there was no rush, but psychologically, it was better to do it as soon as possible. They seemed to be of the opinion that it was unlikely to spread for years yet.

You are bound to worry that you will be one of those small number of cases but really, the odds are against it. And a few weeks or months is unikely to make much difference. 

It is also usually treatable even in those few cases where it has spread.

And nope, no symptoms. Just went to the doctor for a totally unrelated issue and he said, "oh, there's a cyst on your thyroid. Has it ever been checked out? It's probably nothing but we should probably check to see what's causing it as lots of different things can." Looking back at photos now, it is definitely visible in ones three or four years before I was diagnosed and that was the point at which it was large enough to be visible in a photo, so...I would imagine it took a few extra years to grow to that size.

I am absolutely fine. I was sick from the anaesthetic for two or three days after the operation and my neck was a bit sore for a couple of weeks (oh, and my voice was a bit weak for maybe two months?) but that was all.

If you need a neck dissection, it will be done with the thyroidectomy, so it won't make that big a difference to you. It may mean you need a longer recovery time, but...I was back at work a month after my operation and I was told 2-4 weeks even if it were just the thyroidectomy, so...it was really only a matter of an extra week.

Yes the consultant did say that's why he hasn't had me in already as he needs to find out what the lump in my neck is 1st as it would be a bigger operation. He pretty much said I'd lose feeling in my ear neck shoulder for life I'd be on vitamin d and calcium tablets for life but reading up I think that's a worse case scenario. I was told recovery would be 6 weeks but I'm a carer and given my job entails rolling hoisting etc it could well be longer before I can get back to it. You just don't expect to be told you have cancer seeing that they say its rare I'm only in my 30s I think its more common judging by these threads for woman in that age range too. Any how thanks for the info you have given me its been really helpful and I'm glad you are on the mend.

Hello,

I was diagnosed with papillary thyroid cancer a little over a month and a half ago, I'm a 29-year-old male. It had spread to the lymph nodes on one side of the neck. The only symptom I had was a swollen lymph node in the neck. The GP said it seemed benignant (!). Luckily, I was very anxious (my anxiety was useful for once) so he referred me for an ultrasound... which only happened 3 months later, because it was given low priority. We're not 100% sure if it spread anywhere else since I only had a chest x-ray instead of a CT scan done but the x-ray didn't show anything suspicious so chances are it was just in the neck.

I already had the thyroidectomy and neck dissection (left side only) a little over a month ago. Unfortunately because of the tumor position they had to sacrifice a nerve and my left vocal cord is paralized. I can still speak ok-ish (in the first 2 weeks my voice was more like a whisper) and they can inject some material in the paralized vocal cord to improve my voice further. I also have reduced sensitivity in the upper left part of the neck but overall I have to say I recovered pretty well and I don't have any problems, really. I can't sing or anything (which I kind of enjoyed doing :( ) but I can speak clearly enough to have normal conversations or meetings at work. What you say about calcium and vitamins is not necessarily true. They only removed some of my parathyroid glands and while they will keep an eye on my calcium & vitamin levels, for now I don't need to take any extra tablets but the levothyroxine ones, to replace the thyroid hormones and suppress any tumor cells that are potentially still in my neck.

Tomorrow I'm getting the first thyrogen injection (and the chest CT scan done) before they give me radio iodine on Wed.

The doctor said it's likely I had the cancer for at least 5 years, however it's a cancer type that grows slowly. All the doctors I talked to are optimistic and say the most likely outcome is a complete cure, although a recurrence is a possibility, of course (estimated at around 20%?). Recurrence, however, is not as catastrophic as for other cancer types and in fact virtually no one under 50 dies of this type of cancer when it's stage 1 (or so I've been told by the oncologist and surgeon). The staging for under 50s is also different: it never goes beyond stage 2, regardless of where it spread, to indicate that it is very treatable in young patients.

I feel very stressed now because I'm needlephobic and because I'm a bit scared of what the scans might show but rationally I know that I should not be too worried. Radio iodine has no/very mild side effect and they don't last that long anyway, especially if the dosage is not very high. Radio iodine can also treat a cancer that has spread, as it travels through your body and is picked up by both healthy and cancerous thyroid cells that were left after the surgery. I hope I will feel better in a week time, once I'm done with the treatment. For now I'm trying to keep myself distracted, staying outside as much as I can. Spending some time with your loved ones also helps, but unfortunately for now and for the next 2 weeks I will be by myself, which makes the whole process a bit more stressful. I wish you & the thread author all the best, please keep us update of the progress and stay strong!