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

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

Hi Lost92,

I'd like to thank you for your regular updates on your situation, I hope things are all going well with you!

I have found this thread so useful, having received my diagnosis of thyroid cancer, 2 days ago, it's great to have a step by step update of what someone else has been through, it's some what reassuring. 

A CT scan was done on Saturday, before I saw my consultant to receive the news of both the biopsy and CT findings at the same time, on Monday just gone. There was spread to at least one of the lymph nodes next to the nodule (which was included as part of the FNA) so I have been referred to the surgeon for thyroidectomy and middle neck lymph node removal (pressumably), The consultant said I should get an appointment with surgeons in a couple of weeks time. Luckily no spread can be seen in my chest on the CT scan, which is good.

How soon after diagnosis was your surgery preformed? Did you have an appointment with the surgeon first to properly discuss everything, or did they just schedule to operation? I have lots of questions, which my consultant said was best to ask the surgeon.

How are you coping on the thyroxine medication? Did you notice any weight gain or any other symptoms? 

Thank you in advance, if you get the chance to respond :)

Hey!

I had private surgery, which was performed roughly 1 week after diagnosis. Yes, I had a meeting with the surgeon and he explained the whole procedure. My surgery was quite extensive and with some complications but it's just because cancer had spread to a lot of lymph nodes in my case; it's generally not that big of a deal to be honest and the surgeon probably does a ton of those regularly. 

I've been doing fine on thyroxine lately, they changed the dosage a few times in the last 2y and my weight probably fluctuated a bit but nothing really significant to be honest. Side effects depend on the dosage and generally will go away once they find the right dosage for you.

About radio iodine, I had that as well. And yes, it does increase your chance of getting secondary cancers slightly but your doctor weighed the risks and benefits and decided it's better for you to have it. In other terms they thought it's a good idea to trade the small risk increase for the benefits it provides.

I had my regular checkup just last Mon and hopefully everything is fine but so far the doctor is very happy with how things are going.

Also please keep in mind that while a cancer diagnosis is of course frightening, the overwhelming majority of thyroid cancer patients have a completely normal life, especially if you're "young", we're talking 98-99%.

Happy the thread was helpful, let me know if you have other questions!

The 3-year update has some negative news unfortunately. In my last test the thyroglobulin came back at 1.4, from a previous value of 0.7. I'm having a repeat test next week and an ultrasound. Hopefully nothing bad comes out of that but I have to say the thought of having to go through all this again is really terrifying

I'm sorry to hear that. Hope you get good news.

I'm sorry to hear that. Hope you get good news.

I had it tested at another lab for now, with some high sensitive assay, at it came back at 0.9, which is much closer to the running year avg of 0.6. At my usual lab it takes 1 week to get the results back and my appointment is on Thu, it's going to be a long couple of weeks.

Thank you for the good wishes though! :)