Playing the waiting game getting scared - Thyroid UK

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Playing the waiting game getting scared

Lovejoy profile image
19 Replies

Hi guys and girls

Am kind of getting worried in finding out when I be going to kings college for my biopsy I have a enlarged thyroid on my right side of my neck, and got a referral for a urgent suspected cancer for neck and head,

I got my blood tests back on Monday night so I won't count that day

Because it was late, so it's only been three days.

I got pain in my neck where the lump is and my ear and my head also pain comes and goes in my right arm ;(

And a unusual sensation under my tongue on the same side.

Has anybody else had them feelings, and not feeling well xx please reply as I need some reassurance on the subject

Xx thank you in advance xx

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Lovejoy profile image
Lovejoy
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19 Replies
Clutter profile image
Clutter

Hi Lovejoy,

I had ThyCa but it didn't cause pain, just difficulty breathing and swallowing as it compressed the windpipe and gullet. The debilitating symptoms were caused by Hashimoto's which was diagnosed at the same time.

Your pain and sensation under your tongue are probably due to your swollen thyroid or tumour pressing on a nerve. It's no use telling you not to worry, you can't help it. All I can offer is that ThyCa is one of the most successfully treated cancers with an excellent prognosis for normal life span.

Daily medication can take a while to optimise, but once achieved is easier to manage than a dysfunctioning thyroid gland.

Lovejoy profile image
Lovejoy in reply to Clutter

Thank you for replying x

My doctor said that all my blood tests came back normal even the T3 T4 so u was somewhat confused in why the doctor panicked

When I had a scan here is what he wrote....

Noticed a lump in front of neck 2/12 ago to r/o goitre.

Us thyroid

Multinodular goitre is present. Both lobes and isthmus are enlarged the area colloid nodules some with thick septa and some very small solid nodules the vascularity is within normal limits

No cervical lymphadenopathy

Comments

Specialist referral is advised - FNA needs to be considered if clinically indicated

That's what my doctor got from the hospital

Now I got to kings college not sure how long but it's put down as urgent xxx

in reply to Lovejoy

Hi I was treated for ThyCa at Kings, and I'm still under their care. They were absolutely amazing. I'm happy to share with you if that would help.

I refused RAI for my thyca once I'd had a thyroidectomy because mine was stage one and not aggressive. I had a very swollen neck, stabbing pains in my neck, sore to touch. In most case, ThyCa - if it is cancer in your case -is not a fast growing cancer and so there's honestly no need to panic.

Kings is state of the art, and they have a good team, try and see Dr GV in thyrotoxicity / Nuclear Medicine - she's lovely. But don't let them spook you into any treatments, take your time, get the facts, research.

I agree with clutter, the majority of my symptoms were caused by graves, hashimotos and hashitoxicosis, the cancer was the very least of it, on my notes it's called an 'incidental finding'. What are your blood tests results and has your GP every tested your antibodies? Do you have results for TSH, T4, T3, and TPO, TgAb, and TRAB? That will tell us a great deal.

Best wishes

Rebecca

x

Majella profile image
Majella in reply to

Can u tell me what is TPO,TgAb,TRAB

in reply to Majella

TPO is thyroid perioxidase antibodies, TgAb is thyroglobulin antibodies, and TRAB are TSH-Receptor Antibodies, which you have and which you don't will confirm your diagnosis, which then informs treatment.

in reply to

I should add that whilst you can have elevated TgAb in Hashi's, if you have VERY elevated TgAb then this can be a marker for cancer. They must have tested them, or they definitely will when you get to Kings.

HarryE profile image
HarryE in reply to

Sorry for hijacking, but do you have anything to support that about TGAb that I could take to my hopeless endo? I have no TPO, but TG at 100 times over range and m still being refused treatment. Thanks

in reply to HarryE

Yes here you go ncbi.nlm.nih.gov/pubmed/245...

HarryE profile image
HarryE in reply to

Thanks! X

in reply to HarryE

You're welcome. And don't get me started on endos!

HarryE profile image
HarryE in reply to

Quite! :-D

Clutter profile image
Clutter in reply to HarryE

Harry, this might be of interest too thyca.org/pap-fol/more/thyr...

HarryE profile image
HarryE in reply to Clutter

Thank you x

Orangelady1 profile image
Orangelady1

Keep strong, I've had it too, and was terrified! As clutter said there is no point in saying don't worry, because it's impossible. It's amazing what they can do, and at the end of the day, nothing's been confirmed yet, and it may turn out to be benign. Keep your chin up. X

tilly83 profile image
tilly83

Hi let us know how you get on. I had suspected CA of thyroid and wanted to take out half of it but asked for FNA, and all fine, no cancer... symptoms caused by nodules, I feel very well now, hope it's all OK with you xxx

HarryE profile image
HarryE

Lovejoy, sorry you are so worried, understandably! Yes I have had pain where I can feel a lump/swelling, and up into my ear and across my collar bone too. Hope you find out soon xx

HarryE profile image
HarryE

Good luck! Happy to keep in touch, but you might be better to remove your email address in case it gets scammed! :-)

Lovejoy profile image
Lovejoy in reply to HarryE

Hi harryE

Thanks for the support, I got a letter yesterday on my way back from work, I got to go to guys hospital in London on the 26th march (wed) at

2.45pm my sister is. Coming with me so hopefully may find out the same day, here is my email if you want to give each other support

Lovejoy profile image
Lovejoy in reply to Lovejoy

Got rid of email ;)

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