Results confirmed thyroid cancer

[nickym1]

Well, following my hemithyroidectomy on 2nd Jan, it was confirmed for me this evening that my lump was in fact Papillary Thyroid Cancer.

I feel as though I knew this news was coming, but don't know a lot about it. So if anyone can offer anything positive I'd be really grateful.

Any handy hints welcome, anything at all.

Thanks, Nicky.

[helvella Administrator Thyroid UK]

I also know how much finding out something like that would rock me. So I simply cannot ignore your question.

To be positive, I found this in WIki:

Papillary thyroid cancer (75% to 85% of cases [6]) – often in young females – excellent prognosis

One place that has a lot of information is here:

thyca.org/

Please, please do keep posting.

All the best

Rod

[nickym1 in reply to helvella]

Thanks Rod, I'll give this my full attention tomorrow when I can absorb a bit more.

I appreciate your prompt response very much.

Nicky.

[Hidden]

Hi Nicky - so sorry to hear this, I was hoping you'd have better news. Nevertheless I was told it was a better sort to have. From other sufferers' posts you'll probably have to go back and have the rest removed, followed by RAI to make sure, and full Thyroid hormone replacement treatment after (probably T3). Please keep us informed.

(((hugs))) Jane xxx

[nickym1 in reply to Hidden]

Hi again Jane,

Yes, all of the above. I also understand if you're gonna get it, papillary is the one to choose. Will keep you posted.

Thanks for your reply too,

Nicky x

[capricorn]

Hi Nicky

I know exactly how you are feeling as this was me in Jan 2011. I had to go back in the March for the other half to be removed, which luckily for me showed no cancer. I chose not to have RAI treatment as in my case my cancer was at the very start, in fact they had to send away for further testing just to be sure. Plus it was all contained in the thyroid gland. However you MUST discuss your situation with your consultant as to what is best for you as every case is different.

I had four monthly follow ups and to start with I was very nervous each time in case they said the big C had returned, but it's been clear since 2011. I now have 6 monthly check ups/blood tests. Plus its taken them a while to tweak my dosage to get it right and once they are happy with the levels, then it'll be annual check ups. So when they tell me that they'll see me in a year, then I'll no that everything is fine.

For me it was all doom and gloom when they first told me, but now two years on its a completely different story and I'm almost back to my normal (whatever that is) self.

I don't come on here very often but if you want any more help or have any queries, then please pm me and I'll get back asap.

Sending hugs hun and just keep asking questions. Ask your GP or hospital for copies of all your blood tests since you where first diagnosed with thyroid problems up and until your last tests, as that will give you an indication of how your levels are changing all the time.

Love Sue xx

[nickym1 in reply to capricorn]

Thanks Sue, I'm sure that questions will occurr to me, and I will message you if you don't mind.

I'm going to bed now, but will be in touch for sure. Thanks so much for sharing,

Nicky xxxxx

[Clarebear]

Hi Nicky - I'm sorry I don't know much about thyroid cancer, except for the fact that it is one of the "better" ones to have. Just wanted to send you a big hug ((())) xxx

[nickym1 in reply to Clarebear]

Hi Clarebear,

many thanks, hug gratefully received x

[shetlandscooby]

Hi Nicky,

As I said in your post at the beginning of January I was diagnosed with papillary thyroid cancer Nov 2011. In total they found 3 small tumours in my thyroid, 2 in the right and 1 in the left side, and 2 out of 7 lymph nodes were positive. I had my first dose of RAI at the end of Jan 2012 and my second and final dose in July 2012. They swapped me between T3 and T4 between my treatments and in hindsight I wish they had just left me on T3 instead of going through the added stress of coming off T4 and grandually going back on T3.

Good luck on your journey. Any support that I can be then just message me. I'll get back to you as soon as I can

Best wishes

Charlotte.

[nickym1 in reply to shetlandscooby]

Hey Charlotte,

Once again, thanks so much for sharing, advice, and offer of support,

Nicky xxx

[Barbaraj]

Hi Nicky - sorry to hear about your diagnosis but the prognosis is excellent. My niece was diagnosed eighteen months ago and we were all devastated at the time but she's doing really well except for one complication of surgery. The strongest advice I am able to offer is to choose your surgeon very carefully. Do some research and make sure he/she does many of these operations and not just a couple a month. At all costs your parathyroid glands need to be preserved - my niece was not so fortunate, even though she herself is a doctor, and she now has to have calcium replacement and watch her levels for the rest of her life. You'll be fine once your treatment is completed!

Kind Regards,

Barbara

[nickym1 in reply to Barbaraj]

Hi Barbara,

I understand that I have a very good surgeon which I am thankful for.

Thanks for taking the time to share with me.

I have so much to learn!

Nicky x

[Barbaraj in reply to nickym1]

Hi Nicky - I am so pleased to hear that. Still, ask him about parathyroid preservation though - it will show that you're clued up! x

[charlotte11]

Hi Nicky,

I agree with Barbara's post above. Make sure they keep an eye on your calcium levels after surgery. I was diagnosed with papillary thyroid cancer.I had a thyroidectomy in May 2011, immediately started suffering low calcium symptoms. Prescribed Sandocal and Alfacalcidol. Told by my consultant to stop taking both 6 months ago and ended up in A&E just before Christmas with dangerously low calcium levels! Thankfully all sorted no, what I've learnt is that I listen to my body now and if anything feels wrong then I should query it and not let the doctors fob me off, good luck with you're battle. Keep positive and and strong all will be fine.

[nickym1 in reply to charlotte11]

Hi Charlotte,

Thank you so much for your comments and sharing. I can't believe you ended up in a&e! So glad you're sorted now.

I think I'm already proving to be a nuisance with my questions!

Nicky xxx

[sorrel89]

Hello there Nicky...I joined yesterday so this forum is all new to me....Very tough when you get the Ca diagnosis..there is so much to absorb and your life is turned upside down. But I was in your shoes 23 years ago. My Ca had spread to all the lymph nodes too so I needed a radical neck dissection, plus removal of the parathyroids followed by 6 blasts of very high dose RAI. Unfortunately no medic took me seriously until 14 months after my first lump had developed so my cancer had spread.

To cut a very long story short....since receiving my diagnosis and following 13 more ops I have had 4 healthy children. Luckily your Ca appears to have been diagnosed early??? Out of all the thyroid cancers Papillary is one of the best ones to get in terms of prognosis depending on your age but you have to remain lifelong watchful as recurrence can happen but hopefully yours has been nipped in the bud. Have the medics informed you what is the next stage for you...how much active thyroid gland have you left. Not sure if you have been place on thyroxine hormone replacement yet?

First step..get rid of the Ca ....then sort out the medication issues that sometimes can take a while...things can be fine for a while then they might need readjusting again or other options sought. In my experience GP's have very limited knowledge in thyroid issues in general and they seem to think that the thyroid glad only controls your metabolism. Make sure that you have one that is supportive, understanding and will give you the time.

Insist that you are referred to an endocrinologist post surgery and or treatment.

Be very watchful of FreeT4 and FreeT3 as well as TSH, they will also look at your thyroglobulin level. Insist on Calcium Ferritin and Haemoglobin checks too.

Make sure your consultant gives you the time...do not be rushed out the door...you are important. Doctors can be very tight lipped take your list of questions in with you.

...Good Luck Nicky ......I hope this is useful... Look after your immune system too as finally be careful what you read on the internet as approx 80% can be half truths...There is lots of action in the Thyriod world as it is Thyroid Awareness month. Please throw any question at me ... Take Care and all the very best

[nickym1 in reply to sorrel89]

Hey sorrel89,

Thank you so much for sharing with me your story and experiences.

It sounds as though you went through an awful lot, and I'm so pleased to know that you are ok now, and had your family following all that treatment!

I haven't yet been given any medication, but know this will follow in due course.

I will likely message you when things occurr to me, so thanks for offerring possible answers!

Nicky x

[sorrel89 in reply to nickym1]

Sorry about all my spelling inaccuracy...new keyboard! Will be here! xx