Hi there,

I hope you're doing ok. I got the same diagnosis in feb and had my thyroid removed in March and just wanted to reassure you that it's all going to be ok and you will be able to do all of those things again! Just give yourself some time to process everything as I totally get it's such a shock and lots to get used to!

I've found the medication fine so far but I think this will be monitored and they'll make sure you've got the right dose. 
 

Do ask your team any questions as I found this more useful than googling! 
 

Sending you lots of luck for your recovery! 

I had papillary thyroid cancer a year and a half ago, had my thyroid removed in January 2020 and had absolutely no change to my lifestyle at all. If anything, I have lost a bit of weight and have a bit more energy than before the operation, but that is probably imagination/coincidence. Yeah, I think it is possible to have problems with the medication and that was my main worry before the operation too, but I do think it is a minority of people who have ongoing issues like low energy or weight gain.

I would be very surprised if being on thyroid medication prevented you from taking part in sports and so on. 

The surgery really wasn't that big a deal either and my surgery was to remove not only the thyroid but also a whole load of lymph nodes, so yours might be less extensive. I was out of work for about a month after the operation, but that was because I am a teacher and really needed both to be able to speak clearly (my voice was a bit weak for a while and for a week or two after I went back to work, I had difficulty being heard when on yard duty; the classroom was fine, but calling across the yard was just that bit much and I had students running around, passing on, "Miss says you're to come back over here now!") and to be able to turn my neck fully. I've half-joked that I'd probably have gone back a week earlier if it wasn't for one particular class that was particularly difficult and who you REALLY needed to be able to turn your head quickly in order to watch them all at the same time! Other than that stuff, I was pretty much fine fairly quickly after the operation. The worst was that I felt sick for about 12 hours after waking up, but that was the anaesthetic and I was told to expect that as I get travel sick and apparently, if you get travel sick, you are likely to react to the anaesthetic.

From what I've read, spread to the lymph nodes as I had is relatively common, but doesn't really affect the prognosis and spread any further than that is pretty rare. That was the other thing that worried me, the possibility of spread outside the neck, even though I knew it was unlikely.

Feel free to ask me anything else if you want to.

Hi Eve712,

Thank you so much for replying, means a lot and is definitely reasurring hearing from someone who's recently been through the same, Thanks so much for taking the time to reply x

How are you doing now? Hope you're ok and healing and recovering well

Do you have any advice for the surgery recovery etc? 

Or just any general tips/advice that helped you through?

I've got a million questions bit don't want to bombard you haha

I haven't really seen my hospital 'team' yet.... basically I met the ENT doctor, had scan, needle biopsy all on the same day, then he called me a few days later to say its cancer and I need surgery to remove whole thyroid, I was a bit shocked on the phone so stupidly didn't really ask much, I'm not really sure what happens next to be honest, I guess wait for a surgery date letter? 

Thanks again for replying 

Kind wishes x

Hi MargretMary

Thanks for responding, it's so helpful and reasurring to hear from people who been through similar, Thanks for taking the time to respond x

Really happy to hear that you recovered well from your surgery and cancer and are back to your normal life, and happy to hear that for you the medication hasn't had any lingering negative effects on you -that's so reasurring to me! I seem to have only found mostly negative things about not having a thyroid and the medication, so it's great to hear someone doing well x 

Thanks for sharing about your surgery experience, I'm very anxious about it, I think they're to look and check my lymph nodes once im in surgery, hopefully they're ok.

Hahaha I can see why you needed a little more time off work as a teacher! I used to work in a nursery school, loved it but so exhausting at the best of times and definitely need to have a working voice and have eyes in the back of your head (or atleast a functioning neck turn haha) 

I'm worried about the sickness after surgery too, I get sick quite easily and the thought of vomiting whilst just having had neck surgery is scary! Did they give you anything to stop you vomiting? Or did you just feel really sick and not actually vomit? (Sorry for all the questions, if it's too personal please just ignore)

Yes I've read it's very rare to spread anywhere else, did you have any checks or anything to check for any spread? 

If you have any advice or tips for the surgery, being in hospital, recovering, taking the medication etc I'd love to hear! (good and bad) 

Thanks so much for your help, I really appreciate it! 

Hope you're doing well today,

Kind wishes x

No problem at all. Ask whatever you want. I know how many things you start wondering about after a diagnosis like that. I don't know if this will be reassuring or what, but there were times in the past year and a half when it almost felt like it was too easy, like I was waiting for the other shoe to drop.

I spent the first couple of months, waiting to see if not having a thyroid might have any affect on me. This was particularly fun as the pandemic hit in about two months or so after my operation, so I was both looking out for symptoms related to thyroid stuff and for coronavirus symptoms! None of which, thankfully, ever happened.

I don't think they gave me anything to stop me vomiting but this was the day of the operation and I was so tired that I wasn't exactly taking everything in. They did put me on a drip that evening, asking "do you want to use a drip so you don't have to eat or drink if it's making you sick?" It was just unpleasant more than scary.

Yeah, I had a number of scans. Some of these might not apply in your case if there is no lymph node invovlement, but when I was first diagnosed, I had a scan of my neck and chest, which I presume would have checked my lungs. Then after the radio-iodine treatment (like two days after it, just before I left the hospital), I had a whole body iodine scan and then two months ago, I had a second whole body iodine scan, primarily to be sure the radio-iodine treatment had completely removed all remaining thyroid tissue but it would also show any spread. All three came back clear. 

I am really well now. 

Hi again MargaretMary,

Thanks for replying! It's really helping me a lot- Thank you x

That's great to hear that things have gone so well for you, and great news that all your scans came back clear, really pleased for you x It must be a big relief! 

Ugh Yeh that must have been scary worrying about covid and just having had surgery and treatment! I'm relieved that cases of covid are reducing in the UK now, so hopefuly I dont have to worry to much about covid as well as surgery! 

Sorry still got loads of questions (please don't feel like you have to answer them all, I'll understand, it's just so helpful to chat with someone who has been through it and is now well) 

Did you have any scans after your initial diagnosis but before your surgery? Im not sure if the doctor said I was going to have a scan or surgery first... (my head was spinning a bit when he called with the news). I think I'd like to have a scan to check for any spread and to put my mind at rest a bit really! 

I think I might ask if it might be possible to have some anti sickness drugs before the surgery, I think they can give you some with the anaesthetic maybe? Did you actually be sick? Or just felt really nauseous? 

Did you stay in hospital long after the surgery? 

Thanks again for helping x

Yes, I had a scan of my neck and chest before the surgery. Didn't actually get told anything about the results, but kind of figured that meant they hadn't found anything beyond what they already knew about. I was literally leaving the doctor's surgery after I got the diagnosis and got a call from the hospital asking if I could come over for that scan right then.

Yeah, I actually got sick a few times after the surgery. It was not fun.

I was nearly a week in hospital after the surgery. I had my thyroid out on the Monday and went home the following Sunday. It got pretty boring.

Ask anything you want. I am happy to answer.

No worries! It's all a bit crazy and there's so much to take in isn't there! I also felt a bit sick the next day and the nurses gave me some anti sickness medication and that worked really quickly so I would just ask for this if you start to feel sick. I think in terms of general advice just wear baggy tops that aren't too tight at the neck and also there will be a drain there which is a pain but only temporary! I found it useful that I knew to expect that. I was referred to a Macmillan nurse who is great to ask any questions I have!

I am doing ok I'm having the radioactive iodine treatment now and it's been fine just weird having to isolate!! 
 

margaretmary it's great to hear about your recovery and experience also! 

Thanks for your reply MargretMary  

You sharing your experience really helps so much- Thank you! 

Hi Eve712

Thanks for replying :happy:

How are you doing? Hope your iodine treatment is going ok still and you can be out if isolation soon, are you in the hospital or at home? 

Thanks for the advice regarding asking for anti sickness, ill definitely keep that in mind incase I need it. Also wearing baggy tops that dont touch your neck is great advice- thanks.

The neck drain sounds scary! 

Thanks for your help x