Hey. I had thyroid cancer two and a half years ago.

It is very common to have no symptoms whatsoever. And when they say thyroid cancer is treatable, it means that is virtually unheard of for people, especially those under about 50, to die of it. I went on a mad researching spree when I was diagnosed and honestly, found tstudies that ended with a version of "and we also intended to compare (whatever it was they were studying)'s effect on death rates, but we couldn't find enough people who died of it to make accurate stats!" I'm paraphrasing, but...that definitely gave me confidence.

Also, the treatment is not what you imagine when you hear "cancer". It's very unlikely that you will have to have chemotherapy or radiotherapy or anything like that. Generally, removing the thyroid and possibly some lymph nodes, if it has spread to those, pretty much treats it.

You may also need radioiodine treatment to reduce the risk of reccurrance, but that is basically just swallowing a capsule. It's annoying because you have to get injections beforehand (and you may have to go on a diet for two weeks before it) and then afterwards, you are radioactive, so you have to spend time in isolation to avoid contaminating people, but it doesn't hurt or make you feel sick or anything. It's just a hassle and nothing more.

How it went for me was I was diagnosed in November 2019. I had my surgery to remove my thyroid on the 6th of January, 2020, went back to work about the 6th or 7th of February and that was basically that. I do have to take tablets now to do what my thyroid previously did and I had radioiodine treatment the following May. It should have been over the Easter holidays (I'm a teacher so that would mean I didn't have to miss work), but as you know, the world shut down.

One thing is after the radioiodine treatment, if you get it, they will probably do a full body scan. Waiting for the results of this is a little scary, although the consultant pretty much told me she wasn't expecting to find anything, you always worry you will be the one in a hundred where it's spread or something.

Apart from the inconveniences, it really wasn't much more of a deal than say getting your appendix or gallbladder or something removed. If it's any consolation, there was absolutely no issue about my going back to work during covid.

Thank you very much for the comment! As you probably know, in this situation even a message from a "stranger" can make a whole lot of a difference. It actually made me promise myself that I will keep monitoring the website to try and be supportive for other people too.

Hearing the stats that you mention and your overall process made me feel a little better. I'm just a little stressed about the lymph nodes being involved too. I really can't wait for next test and have a full picture of the situation. If I may, how did you find out about the cancer? Did you have enlarged lymph nodes too? How old were you?

Once again, thank you so much, this really means a lot to me

I was 39 and went to the doctor about irregular periods. They pretty much brushed that off but the doctor noticed a cyst on my thyroid that he said should be checked out. No noticeably enlarged lymph nodes but the surgeon took a load out anyway and they found spread to 8, I think. With papillary thyroid cancer, spread to lymph nodes is common and doesn't massively affect prognosis. It is a factor in raising the risk of recurrence, but seems to have little impact on survival, though like I said, some of the studies I read seemed to have difficulty making comparisons as overall deaths were so low.

I mean, nobody wants any form of cancer but I have read that it's about the least worst option where cancer is concerned.

Hello,

I just wanted to update this thread in case someone else in a similar situation sees it in the future. The biopsy confirmed it's papillary thyroid cancer. I'm undergoing surgery tomorrow to remove the thyroid and some lymph nodes from the left side of my neck.

The "good news" is that the doctor is very optimistic (given the cancer type, the age and the test results) and says that this type of cancer is very treatable and after the surgery and iodine treatment I can go on with my life. He also does not expect any long-term effects on my health nor sees this event affecting my lifespan. It seems that it is pretty much unheard of young patients dying of this type of cancer.

Hopefully everything will go well tomorrow and I will be able to go back to my life in about a month

Best of luck with your operation. I was in the same situation in January 2020 and yup, was back at work and back to normal after about a month. 

 I just wanted to wish you well with your op. Please keep us posted. 

Hello and thanks for the good wishes! I had my surgery done 6 days ago. Everything went well, the only complication is that a nerve got likely damaged (unavoidable due the position of the tumor) and it might affect my voice level in the future; they say it's something that can be solved if needs be anyway.

Other than everything is going quite well, the surgery was quite long but the surgeon and his team were happy with the result. I was discharged from the hospital 2 days ago.

Tomorrow I have a scheduled appointment with the doctor. For now the plan is to have a PET scan and iodine treatment administered within 4 weeks. After that I will have regular checkups. Hopefully nothing else will be needed.

Recovery is going well, better than I expected. My voice is hoarse though, and I sound like I caught a cold or have a bad sore throat.

Thank you all for the comments and the good wishes!

If you had the same kind of surgery, how was your voice afterwards? When did it start going back to normal?

Hmm, it's hard to say exactly when it started going back to normal. I know when I returned to work a month later, it still started getting weak if I were talking too long - I think I worried one of my colleagues my first day back! - and I wasn't able to yell across the yard while on yard duty. The world shut down about five weeks later and then I didn't need to make myself heard so much so...not sure when it returned to normal. I'd say maybe 3 months before it was fully back to normal.

It's now been over 3 weeks since the surgery and I'm doing overall better. My voice is stronger although one of the vocal cords is not functioning properly since they had to sacrifice a nerve. I have to say that mentally though it's getting pretty challenging. From the analysis of the stuff they removed during the surgery, 20% of the cells showed tall cell features. It was explained to me that it means it was a bit more aggressive than a normal papillary cancer but the outlook remains positive (I spoke to many doctors, here and abroad). I'm now waiting to get the radio iodine, which will likely be at a high dosage because of the tall cells observed. Did any of you have tall cell features or do you know more about how they affect the prognosis when they're observed in (what is still considered) a small percentage? I had a look at the literature and there seems to be a lot of conflicting results. Some report a 10% survival decrease, some say that taking age into account, there is no difference at all in survival rates compared to classic papillary. Would be nice to know if any of you were in the same situation. Thanks!

The tumor slides were reassessed by a histopathologist here in the UK (I had the surgery done abroad) and his opinion is that the tall cells are more around 10% and therefore not significant, it should realistically not be any worse than a classic papillary cancer. I'm going in for a CT and blood tests on Monday in preparation for the radioiodine, medium dosage, on Wednesday 

How did you feel after taking the radio iodine pill? Any severe side effects? Did you feel any different? How's the scan done 2-3 days after the treatment? Did you feel any better mentally after being done with the treatment?

Thank you!

After the radioiodine pill, you feel no different physically at all. At least I didn't. The only side effect I had was a nosebleed about 10 or 11 days later that I firstly put down to my sinus medication, which it is a side effect of, but it was much stronger than most sinus nosebleeds I get, so I googled out of interest and it mentioned that many people have reported nosebleeds 10-11 days later.

To be honest, had I been slipped it in a drink or something and didn't know I'd taken it, I would have noticed absolutely nothing whatsoever.

The scan did make me feel a little like I was captured by a Batvillain and was about to be crushed. I was half-amused and half yikes, this is getting a bit closer than I expected.

I was a bit concerned about the results of the test so was a bit nervous when they came close

Hi there 

My daughter had thyroid cancer when she was 15 she is now nearly 32. She has her thyroid removed and 2 rounds of iodine treatment. She honestly said other than abit of nausea the worst bit about it is being stuck in the room being bored! She had no side effects after either hope this brings some reassurance xxx

Hi there 

My daughter had thyroid cancer when she was 15 she is now nearly 32. She has her thyroid removed and 2 rounds of iodine treatment. She honestly said other than abit of nausea the worst bit about it is being stuck in the room being bored! She had no side effects after either hope this brings some reassurance xxx

Hello,

thank you very much, hearing about people that went through it and are now doing well always helps a lot! I'm sure boredom won't be a problem for me, covid lockdowns taught me how to cope with isolation :D

Also, 10 days after the treatment all my family is coming here to visit me and my girlfriend finally got her visa approved and is moving back to the UK, so I have a number of things to look forward to at the end of the isolation period

Just updating this post with recent results.

Today I had my CT done, a groin ultrasound (there was a tiny palpable lymph node), blood tests and the first thyrogen injection. I think the thyrogen made me feel slightly nauseous for about one hour but it could also have been the stress (I'm needle phobic and have general anxiety).

Other than that both the CT and the ultrasound showed no evicence of spread, which is good news! Going back tomorrow for the 2nd thyrogen injection and then on Wednesday for the radio iodine and more blood tests

Time for another update.

I was discharged on Friday after the radio iodine treatment. I had no side effects, just a little bit of nausea that is hard to say whether it was caused by the thyrogen, the iodine or the stress. It wasn't serious anyway and I was able to eat normally.

I also received the results of the full-body scan. It did not show any uptake, which is consistent with what we saw in the CT. The only thing that is a bit puzzling is that we didn't see any uptake in the neck either, which is a bit unusual, since usually there are some leftover cell clusters (mainly healthy but also potentially cancerous) in the thyroid bed.

The oncologist believes it's fine and the scan just missed the uptake window. For now it seems like we will just have to monitor the situation; I have an appointment with her in a month.

[@MargaretMary]‍ sorry for bothering you again, do you remember what your full-body scan after the radio iodine showed? Thank you very much in advance!

The scan after the radio-iodine showed uptake in the neck but thankfully nowhere else. 

Good to hear yours didn't find any uptake outside the neck. Best of luck with the appointment next month.

And you're not bothering me at all.

didnt want to just read and run.   thank you for all your update, super helpful xxx

Just updating this post since it's been a while. I've been through a couple of doctor appointments over the last 4 months. No big updates, the THS and T4 are where the oncologist wants them to be, everything else is completely normal, my voice got a lot better (although I'm not as loud as I used to be and surely can't sing due to the left vocal cord paralysis).

What I find a bit unnerving is that before we can actually get a reading on the situation we have to wait until May, when we can reliably measure the thyroglobulin. It's a pretty long wait. I'm generally doing well although I tend to be stressed in the week before I have appointments with the doctor, which at this point happens roughly every 3 months.

[@MargaretMary]‍ when was your thyroglobulin measured? What was the outcome? Are you just doing ultrasound + blood tests every 6 months now? Thank you so much for sharing your situation, it really helps people like me to get through this and I hope this post will also be helpful for people going through the same thing in the future

Well, my radioiodine treatment took place during covid, so...things got a little messy about when things were done. I don't actually think they told me the details, but based on the follow-up since, I'm assuming all is well.

I did have a second full-body scan about a year after the operation and they told me all the bloods were good then.

Yup, now just have ultrasound once a year and blood tests twice a year. Next ultrasound is in January, 14 months after my last one.

Time for a new update. It's been almost a year since the surgery (11 months and 2 weeks to be precise!) and I finally got the results from my latest checkup, which was done 10 months after the radioiodine therapy.

Both the ultrasound and the tumor markers in the blood show no evidence of disease and I've been put in the low risk category for recurrence.

I have to admit I still feel like I haven't processed the good news yet.

Thinking of how quickly and badly all the tests and procedures were going a year ago (nerve and lymph node involvement, small percentage of cells with aggressive subtype, vocal cord damage) it's hard to believe things seem to have turned out okay. Of course no one knows what will happen in the future but for now it's as good as it gets.

I hope this might be helpful to someone that is the same situation I was a year ago, to make them feel a bit more reassured while going through a very hard time.

That's fantastic news. Realy glad to hear you're at low risk.

Hi moomoofunk.

It has been a long time since you posted this reply, so I am not sure if you will see this. but I wondered if I can ask you a question, as it has been a long time since your daughters thyroid removal.

I am due to have a thyroidectomy and radio-iodine treatment, but I read that it increases the risk of secondary cancers so I was hoping to find someone who might have a good idea of long term effects of these procedures. Has your daughter had any problems with secondary cancers? 

I hope you don't mind me asking  

Thank you in advance x