New and seeking input :)

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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

  • Sorry for the delay, been a crazy few days!!  

    Sorry to hear you need the RI, but it's good that it's basically the final final step! <3 Did they say why you needed to have it if all ok with the op? Did they tell you the risk levels of not having it vs having it? 

    So good to hear you're staying so positive and I can definitely understand what you mean re finding it hard to trust that everything's gone when you're only just coming to terms with having cancer! Once we're through this, I'm sure we'll look back at this whole period it will be a complete brain fog of such varying emotions. 

    Thank you for your lovely well wishes! I ordered the cushion as soon as I saw your message. I was going to wait until after the op but seeing your message I thought gah just get it now! The op went well, thank God! However, the difficulty swallowing and coughing is really surprising. Did your throat feel super sore and tight post op?? I knew this would happen, but didn't think it would be as uncomfortable as this. 

    Also I'm just on paracetamol, did you take any stronger pain killers? 

  • I’m so sorry it’s taken me ages to reply Face palm tone1‍ It’s been a tough couple of weeks between the craziness of the last few months finally hitting me and trying to get some errors with my medical record corrected!

    They didn’t really say much initially about why I’d be having the RAI but after speaking to a Macmillan nurse, it’s seems to be quite a common thing to do after a total thyroidectomy just to ensure at there’s no thyroid / cancer cells remaining and to help lower the risk of recurrence! I’ve not had a chance to ask about risks etc but should have an appointment with the Dr where I can go through all of that before the treatment Fingers crossed tone1

    How are you and how are you healing? I hope it’s all going well Blue heart Ahh my throat felt awful for about a week but I’d been warned beforehand that it would because the breathing tube they use is larger than normal as it has sensors on to help them during the op! My Pensiveroat is still tight occasionally now too. I found that holding I’ve packs on my neck helped and plenty of cold / warm drinks Relaxed

    I stuck to paracetamol too and found okay, although wish I’d kept taking it consistently for longer Joy

  • Thanks for the tips! Will try out the neck packs. Thankfully the swallowing has got a lot better. It's still difficult, but not as bad as it was in those first few days which were horrendous!

    Had my appointment with my Dr last week and he confirmed no further treatment is recommended by the MDT. Just need to have regular monitoring with US's. Really happy and thankful, but equally feel slightly on nervous about the potential recurrence. Mainly because when they analysed the thyroid they found another cancerous tumour, but this was 0.3mm!! So was missed by the US and MRI etc. Great that they took it out, but I asked how do you know that there's no 0.3mm tumour on the right!? They said they don't, but hence why you have the regular scans. I'm definitely still happy with my decision to only go with the Hemi T just hope and pray this is the end of it. 

    Do you know when your RI treatment is? How are you healing up now? Sending positive vibes <3