Hey. I had thyroid cancer two years ago and even if it is cancer in your case, and it still might not be, it isn't really what you might be imagining when you hear the word "cancer."

The most common form of thyroid cancer is papillary thyroid cancer with follicular the second most common. Both of those have a near 100% survival rate, particular among "younger" people, where younger means under about 50. And they rarely use chemotherapy or radiotherapy. 

If it is thyroid cancer, they will remove your thyroid and possibly some lymph nodes. Then you will have to take medication every day for life to replace what your thyroid does. But that's all really. I've felt no different on it. After the operation, I was sick for a couple of days, mostly from the anaesthetic and my neck was a bit tingly (and still is sometimes) but that was about it. I had a month off work after the operation and that was mostly because I am a teacher and really need both to be able to use my voice fully (for a few weeks after the operation it got weak if I talked for a long time) and to be able to turn my head fully.

You should be back with your children in a couple of days if they only remove your thyroid and maybe after about a week if they take lymph nodes as well. I was in hospital for 6 days with both removed.

They might also do radioiodine treatment, which is basically just swallowing a capsule. The difficult part here for you is likely to be that you will probably need somebody else to care for your children for a while, as there are restrictions on being around young children because you are radioactive. But it doesn't make you feel sick or anything. 

Thanks so much. They also said some lymph nodes look suspicious - does that change the prognosis? I'm really trying not to google. I still haven't been home since my appointment, too scared of breaking down in front of the kids :(

Not really. It may increase the chances of reccurance (though the odds will still be against it) but it doesn't decrease the survival rate. It's still probably over 99%.

With papillary thyroid cancer, spread to lymph nodes is pretty common. I've seen numbers from 20% to 75%. 

It just means the recovery time from the operation might be a bit longer and they will probably do radioiodine treatment to reduce the chances of reccurrance.

I had my FNA yesterday and now I just got a text confirming a face to face appointment next Friday. I'm obviously over-reading into it. They wouldn't schedule a face to face appointment so quickly if it wasn't serious, would they? Wouldn't they call with benign results?

I don't think it would be at all unusual for them to schedule a face-to-face regardless of results. And it is very likely they sent that out before they had the results anyway. I had a face-to-face appointment scheduled for a week after my biopsy and while I did get a malignant result, they scheduled the appointment before they knew that, I think it was before I even had the biopsy. I think they did a "we'll send you for a biopsy now and arrange an appointment next week to give you the results." They sounded like they expected a benign result at that point.

If they were to phone with benign results and call people in for malignant, people would know the results before they came in, which would lead to people worrying for the week, knowing it was likely to be malignant and not able to ask any questions. And even if it is benign, they might want to talk to you. For example, they might want to check that you don't want it removed for cosmetic reasons. Or...it is very common for thyroid FNAs to be indeterminate and they might want to tell you they need to take another FNA or ask if you would prefer to have half your thyroid removed.

I wouldn't read anything into a face-to-face appointment. Nor do I think a week and a day is unusually quick. Admittedly, my case was before covid set in, but I do think a week for results is the norm for most things. My guess is that it's standard to have an appointment for face-to-face the following week and is no indication whatsoever about what the results are.

Actually, I have a story for you. A year after I had thyroid cancer, I had a full body radioiodine scan, to be sure I was fully cancer-free. They told me at the time that the doctor would phone with the results within a week. Then I got a letter, calling me to come in for a face-to-face appointment. I freaked. If they were changing it from a phone call to a face-to-face appointment, then surely they must have found something unexpected, right? 

I ended up calling the hospital and the doctor rang back and told me it was totally clear; 100% cancer free. I told her I had been worried when I got a call for a face-to-face appointment after being told it would be a phone call and she said they had just started reintroducing face-to-face appointments as covid cases were going down and clearly the person who told me it would be a phone call hadn't realised they were restarting.

Best of luck with your results and let me know what happens. I hope you are reasonably busy for the week so you don't have too much time to be thinking about it.

Thank you. As always, a brilliant response that will help me to get through this next week. ️
 

I'm so worried it's spread and am putting this chronic cough and wheezing down to lung mets. Ugh. Hate this, but appreciate you more than you know!

That is unlikely. The chance of lung mets, even if you have thyroid cancer, is well under 5%.

And absolute worst case scenario, even if you have cancer and lung mets, which is really, really unlikely, even that is treatable/curable. The survival rate for metastatic papillary thyroid cancer is somewhere around 75% - 80% and I think it's a lot higher - possibly over 90%? - among younger people (under about 50).

Under 45ish (some things say 45, some say 55), spread outside the neck makes papillary (and I think follicular) thyroid cancer stage 2. 

It's far more likely the cough is just a cough though.

MargaretMary, you deserve some kind of forum award