I've had thyroid cancer and honestly, even if you DO have it (and the odds are still against it, particularly if the specialist is saying she doesn't think it is), it's not really what you are thinking when you hear the word cancer. For a start, the survival rate is really high, so high that calling it a survival rate sounds kinda silly. For the most common form, papillary thyroid cancer, I think the survival rate is over 99% for younger patients, younger being under about 50. It is also rarely treated with chemotherapy or radiotherapy, just surgery and then possibly radio-iodine therapy, depending on how large it is and if there is spread to lymph nodes. Radio-iodine therapy is basically just taking a pill. It's annoying because you are radioactive for a period afterwards and there are restrictions on what you can do but that is all really.

I had a pretty large nodule and it had spread to some lymph nodes (this does not affect prognosis much but does raise the risk of recurrence) and the lump was definitely there for 4 or 5 years before it was diagnosed. I had an operation to remove my thyroid, was in hospital just under a week and then was pretty much OK other than some discomfort in my neck for a few weeks. I took a month off work, because I'm a teacher and I needed to be able to turn my head fully and raise my voice, but then went back to normal duties and got back to my life as normal.

I did have radioiodine treatment some months later, but like I said, that was just an inconvenience, and honestly, for me, it was less of an inconvenience than it would usually be as it was during lockdown so a lot of the restrictions like don't be within a certain distance of people for long periods, were required of everybody anyway.

Thank you so much for taking the time to reply to me and I am delighted to hear that you have had such a positive outcome. For me I think a lot of it is the brutality of finding out by phone. I am also worried about COVID induced treatment delays. I am 57.

Do you mind me asking how you have been without the thyroid? I have read stories of this being particularly difficult & challenging.  Also were you given any indication before the biopsy of the odds of it being malignant? And what are the chances of recurrence?

I have been absolutely fine without the thyroid. I noticed no difference whatsoever, possibly lost a bit of weight and have slightly more energy, but the odds are that's just imagination/coincidence. 

I wasn't given any indication before the biopsy of the odds of it being malignant. After I got my result, the consultant said they see that result about 5% of the time, but no indication beforehand.

The risk of recurrence depends on a lot of things, including the size of the nodule, whether any lymph nodes are involved, how many are involved, how complete the surgery is, any invasion, etc. I think in my case, the risk is somewhere around 20% but I just kinda figured that out from googling and some guesswork. I wasn't given any clear numbers. If the risk is intermediate or higher, I think they usually recommend radioiodine treatment to reduce it.

One "good" thing with thyroid cancer, if anything about cancer can be considered "good," is that it is slow growing. I was told when diagnosed that "it's not going to do anything in the immediate future" but that it was better psychologically to take it out sooner rather than later. I don't think a few months delay would be likely to have much effect in most cases.

I was in hospital with COVD late February/early March this year. Whilst there I had a CT scan on my chest because they were concerned about blood clots on the lungs.

It just happened that on the scan they saw what they initially thought was a calcified nodule on my thyroid. I was referred for an ultrasound to check it out.

During the ultrasound appointment I was told that they needed to do a fine needle biopsy, because they couldn't see the area properly, as the ultrasound couldn't penetrate through the calcium.

When the results came back, I received a diagnosis of cancer in the thyroid and a lymph node behind it.

Obviously I was devastated when I received the news, but I had an appointment with a consultant within a couple of weeks and he sounded positive about the prognosis.

On Friday I had a total thyroidectomy and central neck dissection (to take away lymph nodes). The surgery took around 6 hours.

When I came around I initially had problems with pins and needles in my hands, which came back periodically during the first day or so post surgery. This can be to do with calcium levels being affected if the parathyroid glands are damaged. In my case, the calcium levels in the blood look ok, but they have prescribed supplements for the time being to be on the safe side.

As far as the surgery itself goes, I have very little pain from the actual wound. I had two drains in until today (Sunday) but they weren't any big problem - just awkward to carry around.

I should be going home tomorrow after a final check on the calcium levels (I'd be home now if it wasn't for that!)

My voice is a bit croaky, but it's getting better all the time.

My consultant says I'll have radio-iodine treatment in around 6 to 8 weeks time. I'm not sure what that involves in regard to a hospital stay, but I'm sure it'll be OK.

In my case I have to thank COVID, because I wouldn't have been aware of the cancer without that CT scan!

I spent two days in hospital for the radioiodine treatment. Went in on Tuesday and got out Thursday morning.

Calcium levels are probably a temporary thing. I had problems with them after my operation and was actually meant to have them checked 6-8 weeks later to make sure they had returned to normal, but covid set in and it was actually more like 5 months later that I got them checked (they were fine).

I suppose the amount of time depends on the required dosage, but two days isn't too bad. It's boredom I'm worried about - not sure what the rules are around what you can/can't have with you.

I think my calcium levels will be OK - in fact I think they were a bit confused about why I had pins and needles when the levels in the blood looked fine. I believe I'll see the consultant in a couple of weeks and he'll review it.

I'm off for a FNA on my thyroid tomorrow. I apparently have 'many' nodules discovered after an Ultrasound a few weeks back. Reading this thread has been really reassuring so thank you for sharing your experience MargaretMary!