What can I expect to happen next? why do I need my blooming dressing gown!

[Ragstar]

Hi all! I'm new to the forum.

I'm currently on the 2ww cancer pathway due to a thyroid scan that revealed a 'suspicious for cancer' nodule, also an enlarged nodular goitre.

I had a FNA biopsy last week. I've just received my next (outpatients) appointment letter for 2wks from the last appt. but the silly thing that gave me a tearful day yesterday was that I'm required to bring my own dressing gown and to 'prepare to be examined' which I take to mean that I'll be scanned or x-rayed ie. the cancer isn't localised.

I'm finding the whole process much easier to deal with when I can predict what will happen next... is this course of action similar to anyone else's ?

(ps the houseman? is that the right word? already said - make that blurted out! that the whole thyroid would be removed and that the results of the fna would determine if my neck needed 'reseccting?' is that the right terminology)

thank you in anticipation

[Clutter]

Ragstar,

I suspect "bring a dressing gown and prepare to be examined" is a standard instruction on the outpatient letter. My endo appointments take place in the diabetes unit and all my appointment letters instruct me to bring a urine sample and the one time I did it wasn't tested so I've not bothered since.

I think your appointment will be to discuss your FNA result and treatment options. The houseman was getting ahead of himself. A hemilobectomy to remove the nodule or a total thyroidectomy to remove the entire gland and goitre can be done via 2-3cm incision in the hollow of your throat. Neck resection is only likely if thyroid cancer has spread from the thyroid gland to the lymph nodes so that the lymph nodes may be removed.

If thyroid cancer has spread outside of the thyroid capsule you will be offered radioactive iodine ablatement after thyroidectomy to mop up remnant thyroid cells loosed during surgery. Thyroid cells anywhere in the body will take up the radio active iodine and will be destroyed.

I hope your results are benign but, if not, please be reassured that most thyroid cancer is easily treated and has a very high survival rate. I'm in my fifth year of remission.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Ragstar in reply to Clutter]

Hi Clutter, many thanks for your reply - Ive only just worked out how to find it so as to update! I'm not too clever with computers.

You were totally correct re the appointment letter being a template. I felt like a real plonker turning up to my appointment with my dressing gown when it was not needed. The consultant and nurse commented on how they were aware of it and 'really ought to have the old template changed' - how difficult can that be??

In the time since last posting Ive had a fNA and a tru-cut biopsy and have been told that the nodule has come back 'fine' - tho she was very cagey re saying 'not cancer', she said that there were no other tests that she could do on the nodule, but reluctantly offered to take the thyroid out 'if I wanted'.

I'm terribly confused - and the more confused I became the more impatient and patronising/rude she became so I left in tears feeling very ticked off and am no nearer understanding what is going on.

I'm convinced I'm hypothyroid if not Hashimoto's (my mum was). BUT the consultant said my thyroid was normal and behaving normally, but then why do I have an enlarged nodular goitre? and why would she offer to remove a 'normal' thyroid.

I hope this is ok to post as a reply... should I make it a new post?

Thanks in anticipation!

[Clutter in reply to Ragstar]

Ragstar,

I had a large nodule on one lobe and 2 small nodules on the other but cold nodules rarely affect thyroid levels and mine were indeed unequivocally normal.

I don't know why your endo appeared to offer you a thyroidectomy when your FNA and biopsy results were benign unless the nodules or goitre are causing you other difficulties.

My FNA was inconclusive but the large nodule was to be removed to relieve compression on my trachea which made breathing and swallowing difficult.

What are your thyroid results and ranges?

[Ragstar in reply to Clutter]

Hi Clutter,

wow, isn't it worrying that your cancer was only discovered when the thyroid was actually removed - I wonder if it had not been impacting on your trachea whether it might have been left? which I suppose is my worry with mine... she didn't seem to be able to categorically say that it definitely wasn't cancer and is now monitoring me, but why??

The radiographer said the nodule was suspicious partly because it has a very rich blood supply on the scan which the other nodules don't. I was too flummoxed question this the relevance of this as the endo became very defensive.

I only managed to catch a glimpse of my blood results which I jotted down as T3 - 1.3 and T4 - 12, the levels were within the blood ranges.

I plan to get a print out from the docs who hopefully won't give me a hard time too.

Can I ask you how you've coped with being medicated since having your thyroidectomy.

[Clutter in reply to Ragstar]

Ragstar,

FNA doesn't always give a conclusive result as it can be difficult to hit the exact spot to draw off cells for analysis. The larger sample after thyroidectomy enables conclusive results.

If pathology can't conclusively rule out malignancy your endo isn't being defensive and is doing the right thing in monitoring your nodules in case anything changes.

Results without ranges aren't interpretable. Post the results and ranges in a new question when you can.

I was recovering on Liothyronine (T3) but became very unwell when I was switched to Levothyroxine although I am now well on a combination of T3 and Levothyroxine.

[Ragstar in reply to Clutter]

Thank you Clutter, you've really helped me put my mind in order!

I'm happy to hear that your levels are good now and it can be done.

I'll post up my levels when I get them.

Thank you again for listening and for your advice.