New and seeking input :)

Hey Wave 

First of all I want to thank you all for creating such a supportive and encouraging environment! I’ve been on this forum so many times already and have found great comfort in reading your stories and advice / support.

I guess a little bit about why I chose to finally take the plunge and post on here instead of just watching from the sidelines! I'm 31 and have recently been diagnosed with papillary thyroid cancer, specifically on the right of my isthmus (the centre part of the thyroid).

When I had my most recent Drs appointment, I was told that it had been recommended at my MDT meeting that I either have a total thyroidectomy or partial thyroidectomy (the right side and isthmus removed), but that the choice as to which was up to me.

I’ve chosen to have a total thyroidectomy and am largely confident in my decision - due to where my cancer is, the chances are that they could do a partial thyroidectomy and still need to go back in and remove the rest at a later date anyway, meaning two surgeries and a longer wait.

What’s really been playing on my mind are the risks. This is my first major surgery and while I know they have to share the risks with you, they’ve not stopped going round and round my head on a scary and nerve wracking loop. Not helped by the fact that the risks are apparently doubled if you have a TT.

I would therefore love to hear people’s positive experiences of having a total thyroidectomy, especially if your cancer happened to be located in a similar place to mine!

Also interested to hear from other people who were given an option between total or partial thyroidectomy and if so, which they chose and why.

Thanks so much Slight smile

  • Hi 

    not sure how helpful you will find my input but here you go- 

    my daughter(10yrold) had full thyroidectomy with right side lymph node removal, they call that something medical but I always forget the name. I was absolutely petrified when I heard the risks as I had convinced myself it wasn’t that big of an operation. We weren’t given the option of full or part which I’m glad of but I think now looking at it we would of probably chosen to take the whole thing. 

    she is about 2 weeks post surgery now there were no complications no change in her voice apart from the day after where she could only whisper really. the surgery was long but that could of been because she is a small child. the scar is super neat and healing like you wouldn’t believe. She says she has no pain but looks a little stiff and we are trying to convince her to slowly stretch it from side to side. 

    I agree this page is very comforting it’s nice to read other peoples experiences and makes you realise your not alone. you must be so scared but you’ll be in safe hands. 

    Good luck with everything x 

  • Hi. My daughter had a total thyroidectomy and lymph node removal almost 2 years ago, aged 11, following a papillary thyroid cancer diagnosis. She recovered unbelievably well. She has a necklace scar which has healed so well. 6 hour operation, then radio iodine ablation a few months later.

    She amazed us all with her bravery and positive attitude .

    Good luck xx

  • Hi

    I had a hemi, then a completion thyroidectomy...they said that there could be more risks due to scarring etc from the previous surgery but it was all fine and went well. Mine was localised to my left lobe but because of the size and type, a completion was advised...not sure if that helps

  • Hi @Theskyisthelimit! 

    Your situation sounds almost identical to mine! I've just turned 30 and have been diagnosed with papillary thyroid cancer. Mine is located on the right of the isthmus and was originally told I would need a hemithroidectomy, but following an MDT my consultant have now recommended a full thyroidectomy. However, he has said the decision is ultimately up to me to make. 

    I'm actually getting a second opinion as feel like I need more guidance. However, I am currently leaning more to the hemi rather than the full. The problem for me with the full is that there appear to be much higher risks around breathing issues, calcium deficiency and of course you'd 100% need to take the thyroxine. I think I'm leaning more to taking the risk that I may need surgery twice and hoping that I won't. Rather than taking the risk of having the full surgery and then they realise I only needed the hemi. 

    I'm still in the throws of debating it all though as just heard the news re the full vs hemi yesterday, so keen to hear your thoughts! Feel free to PM :) 

  • Thank you so much for sharing your daughters’ story! I’m so sorry that she’s having to go through this at such a young age, but it sounds like she’s an incredibly strong and brave girl

    It really helped build my confidence going in to know she was recovering so well and I’m happy to say that I’m 3 days post surgery and *fingers crossed* everything seems to have gone well! I hope your daughters’ recovery is continuing to go smoothly. Heart xx️

  • I’m so sorry your daughter ever had to go through that, especially at such a young age! But so pleased to hear that she recovered so well Relaxed️ She certainly does sound like an incredibly brave girl!

     Thank you so much for sharing her story too, it helped me so much going into my op on Monday having heard such positive stories and thankfully it seems to have all gone well Fingers crossed tone1 

    xx

  • Sorry you’ve had to go through this too but thank you so much for sharing! I hope you’re doing well now  

    It really did help me go into my op feeling more confident knowing people had gone through it and it had gone so well xx

  • Hey, I couldn’t figure out how to PM so hope you don’t mind me just replying normally on here! Relaxed

    So crazy to hear that your situation is so similar to mine! I’m so sorry you’re having to go through this too but I’m glad to find someone who understands my experience so well

    I can sympathise so much with how hard the decision between a hemi or full thyroidectomy feels and getting a second opinion sounds like a good idea as hopefully it’ll help you feel more confident in your decision Heart

    It was a combination of a few things that helped build my confidence in choosing a full thyroidectomy in the end. One was receiving the pre-op sheet that gave details of the level of risk and seeing that they weren’t as high as I expected. The main thing for me though was the feeling of just wanting all of the cancer out of me - I knew I’d always have the worry in the back of my mind that it might reoccur if any of it was left in so it felt like a relief to just know the whole thyroid would be gone.

    Obviously everyone’s experience varies so much, but if it helps at all, I had my total thyroidectomy Monday and it (fingers crossed) went really well. Both calcium checks have come back normal, my voice gets tired and a little croaky after talking for a while but nothing significant (and it should hopefully ease up soon) and adjusting to taking the medication hasn’t been too bad so far Fingers crossed tone1  That’s not to say it’s been a breeze but the fear was definitely much worse than the reality! Xx

  • Amazing news!!! So glad the op went well PrayRaised hands How are you doing now? Pray everything is still ok? 

    I totally hear you re having the fear of it coming back. I hadn’t thought of that but it’s actually such a big consideration. Can I ask if you’re also having the radioactive iodine? Or is that still undecided at the moment?

  • I’m doing well thanks Heart️ Still taking things very slowly but I got to take the butterfly stitches / steri-strips off today (which was an experience) and  every little step forward feels so positive! Plus it’s nice to physically see how well everything is healing Relaxed

    How️ are you doing? I hope you’re managing to keep yourself distracted as much as poss and have lots of support around you Heart

    i won’t know until my follow up appointment in a few weeks whether I’ll have to have the RAI treatment or not, but don’t mind if I do as it’s just another step closer to this hopefully being over Fingers crossed tone1