Thyroid surgeon appointment

[Cazza83]

Hi all! Just a query about ent appointments and other peoples experiences.... I had a follow up appt after yet another ultrasound of my thyroid, to which I was told nodules now look completely benign and to just go back if the big nodule grows (I have a multinodular goitre with retrosternal extension) this was xmas eve but I've now had another appt through the post to see a thyroid surgeon...i rang the hosp as I thought it was a mistake, and it turns out that the consultant that I saw has referred me but didnt mention anything at the time. Has anyone else had similar in that they've not been made aware that they may need surgery or do you sometimes see surgeons just to discuss the positioning of goitres and long term plans? I'm unsure what to expect from this appt as now it seems that it might not be a leave it and come back if needed situation

Any advice appreciated

Thanks

Caz

[Nanaedake]

Your initial appointment might be to discuss several options and you should be able to discuss these with the surgeon and also find out what his opinion is. You can also ask to be referred for a second opinion before making up your mind.

It's good that the doctor or consultant has followed up your case and referred you on as it may be beyond his/her expertise.

[Cazza83 in reply to Nanaedake]

Thanks for the advice, I had an initial appointment in June last year and have seen general ent consultants afew times since then due to the nodule being indeterminate. I was just a little confused that I'd been given this appt with a thyroid surgeon as the consultant said just go back to your gp if it grows. He must have changed his mind for whatever reason, not that I'm.complaining as he is being thorough 👍

[Nanaedake in reply to Cazza83]

He may have taken advice from a more informed colleague and decided to refer. In any case, as you say, it's better to be thorough. ENT don't usually have specialism in thyroid. You can Google the Consulants' specialisms in the unit or hospital you are under. For best thyroid care you need a thyroid specialist, not just someone with an 'interest' in thyroid.

[Cazza83 in reply to Nanaedake]

Yeah that makes sense. Thanks for the advice, I'll do abit of research. I had previously thought that I may need it removing due to where it is but they havent seemed too concerned about it

[Lizzie2995]

I had the same thing. Once my lump was found I was under the “multidiscipline” team which meant appointments with both endo and surgeon even though no surgery was planned.

[Cazza83 in reply to Lizzie2995]

Aww right! How did you get on? Hope you are sorted. I havent had any with endo as no issues with thyroid function, just checks of nodules

[Lizzie2995 in reply to Cazza83]

After around 2 years of monitoring my borderline lump became 3F so I had a partial thyroidectomy. Was terrified if having the op, but is was a very simple procedure and I was back to work after 2 weeks.

[Cazza83 in reply to Lizzie2995]

That's good that it was simple then and wow really good recovery time! If I do need to have mine out it might just be due to location, I've just had insufficient biopsies but they assured me its benign from a recent ultrasound

[jib70]

Hi Cazza83. If I briefly tell you what is happening in my case it may reassure you. I also have a retrosternal multinodular goitre.

From GP I was referred to an endo who then referred me to an ENT surgeon who has a specialism in thyroid.

I am getting an extremely thorough investigation under this surgeon. Had camera down throat, then ultrasound, ct scan with contrast and now I am due for a barium swallow in a week or two.

There seems no sign of any malignancy thankfully. and unless there is any deviation to the throat caused by the goitre he does not want to operate and I am so grateful for that.

Have you looked up your surgeon on Google? Hopefully he will have a special interest in thyroid, and like me you will be able to discuss options with him after thorough investigations.

Do let us know how you get on, and don't worry (as I did) that seeing a surgeon means an automatic thyroidectomy. Hope I haven't gone on too much j

[Cazza83 in reply to jib70]

Hiya! I remember you saying about yours, you dont hear many stories about retrosternal so really appreciate the info. Good to hear you are having the barium swallow, that gives a good look at your esophagus 👍I've had that done which showed deviation of the esophagus but no compression so he said that wasnt a problem. Also had ultrasounds and biopsies which a general ent consultant put me forward for, it's only now I've been referred to a thyroid surgeon. I havent had a ct before for mine but have been told they definitely think it is benign which is great.

That's so good there isnt any malignancy. Let me know how you get on with the barium swallow.

I have looked him up and he seems to be the top consultant for ent in my area and has an OBE for training in ent. It says that he has a special interest in thyroid. As I've had the investigations already not sure what else we would have to go through given the other consultant said to come back if it grows so we shall see! And thanks so much for your message. Hope you get on okay with yours

Caz

[Nanaedake in reply to Cazza83]

A special interest in Thyroid is not the same thing as a thyroid specialist. Just because he's a top ENT in the area doesn't mean he has enough experience with thyroid or does much thyroid surgery. If you do need thyroid surgery for best results check he does more than 40 thyroidectomies per year. That seems to lower the risks according to what I've read and heard.

If not, then ask for a referral to a specialist for second opinion.

[Cazza83 in reply to Nanaedake]

Thank you, I cant find anything about him online but if it comes down to potential surgery I'll make sure I enquire. Thanks for the advice

[jib70 in reply to Cazza83]

Hi - I was determined to research as much as I could about retrosternal goitres just because I like to be informed and this article from RoyalCollegeofSurgeons is interesting. My specialist also said it as a good article, so comes with a bit of a recommendation and maybe you'll find it worth a read.

ncbi.nlm.nih.gov/pmc/articl...

[Cazza83 in reply to jib70]

Thank you, that's a really interesting read! Looks like they really dont like to do the surgery if they can avoid it. Mine is asymptomatic so I'm sure he will just be advising that I have mine monitored when i go next week

Hope you are getting on okay with yours

Thanks