Just been diagnosed with Papilliary Thyroid Cancer :(

[wysewoman]

So I'm just back from the hospital with bad news. Strangely, i feel sort of relieved - i spent all morning in such an anxious state waiting for the appointment to find out the result from my hemithyroidectomy last week it was unbearable!

My consultant was excellent and said the prognosis was 99% survivable.

I had a 2.5cm lump within my thyroid gland with a clear margin. The op to take the other side is at the end of April. I'm not sure whether to start on bio oil or not as they are going to recut me - does anyone know?

Would love to hear any papillary Cancer survivor stories so i know i'm not alone.

Thanks

Melissa

[Marz]

youtube.com/watch?v=WJqZDh3...(Not working as expected?)

I am really saddened to read of your diagnosis. Thank goodness you have found this site and so many helpful people. I did not have thyroid cancer but one of my daughters did....and all is well. So do hope others will soon be along to offer more helpful support.

Have posted this link as I was once told about the down-side of Bio-Oil....am an Almond Oil fan myself - also coconut... and of course all the things she mentions on the video

Wishing you well sooooooon....just be kind and gentle to yourself....sending warm wishes too.....

[Moggie]

So sorry for your sad news, cant offer you any advice but just wanted to wish you all the very best.

Moggie x

[Orangelady1]

Hi. Sorry to hear your news. But your surgeon is right, great survival rate! I was exactly where you are 2 and 1/2 years ago. I had a partial done got my results and it was papillary also. I had the TT op done 4 weeks later. They used the original wound to do second op. I starting using bio oil about a month after that as you can only use it on totally healed scars. I then went and had 4 days in hospital for my RAI. If you need any other info please don't hesitate to ask me. Keep well and strong. X

[wysewoman in reply to Orangelady1]

Hi Orangelady,

They have said that unless there are any cancer cells on the other side then I wont need to have RAI. So fingers crossed I'm cancer free on the other side.

The consultant was saying that they have revised the guidelines recently - the new draft is here: british-thyroid-association....

To everyone - Thanks so much for the replies

Melissa

[Orangelady1 in reply to wysewoman]

That's good, mine was clear on other side, but was told that the RAI kills of any thyroid tissue as it's very fibrous and can float around during surgery, so guaranteed then of no reoccurrence. Where Abouts are you? I understand how you said you were very anxious before results, I was a mess! Did you have thyroid related issues before surgery or was it just because of the lump?

[wysewoman in reply to Orangelady1]

Hi there Orangelady,

I just had a lump - no symptoms of anything, no sore throat, hoarseness or enlarged nodes. I was a little surprised that it was Cancer but there we go..

I've hit the red wine now but still feel relieved that I know what I'm dealing with - hope this feeling lasts.

it certainly gives one a new perspective on life and hey - no one gets out of life alive!

Did you have regular checkups etc? How are you now?

Melissa

[Orangelady1 in reply to wysewoman]

That's exactly my story. Just went to docs and she felt the lump, didn't even know it was there! I'm doing not bad, good dats and bad. It took a while to get my thyroxin levels right, but they still go up and down. Put on some weight that is hard to shift, but it's a small price to pay. I had a full body scan at onchology after op, then went 2 times a year there for blood work etc, then after one year had another full body scan. Then was told cancer free. I now go yearly to my thyroid consultant for bloods. And if I need to see them I can make an appointment. Saw an endo once but was a waste of time. When is your TT. X

[Orangelady1 in reply to wysewoman]

Tried to look at your link you put up, but it's saying "not found"

[wysewoman in reply to Orangelady1]

Oops try this one: british-thyroid-association...

or its on here: british-thyroid-association...

I've not been told I will have a full body scan - consultant didnt seem to think it would be necessary... should I push for one do you think?

[Orangelady1 in reply to wysewoman]

It was routine when I had my RAI. Maybe it just depends on which health authority you come under. But I would ask about the RAI again. My oncologist said to me that because the left lobe they took out had very early cell changes ( just stage 1) that they give me RAI to kill off any remainder thyroid tissue, it can travel around your body during the operation. My other half was totally clear. But still had the treatment. I was glad of it, wanted to make sure they got all the little crettins!!! So the body scan was to see where the iodine went, and then to make sure a year later there were no more anywhere. It takes 9 months for the thyroid tissue to fully die off. Also it was a good MOT for my body, as she put it, it's a shame everyone can't have full body scans , maybe we would catch it quicker then. X

[Clutter]

Hi Melissa,

I'm very sorry your result isn't benign.

Please make sure you get copies of all your past and future thyroid blood tests so you can determine your personal optimal TSH before you have completion thyroidectomy and won't have some clown telling you everything's fine because you're in the general population range.

I had RAI following Huthle Cell Carcinoma almost 2 years ago. I think it was protocol then even though HCC doesn't uptake well. WBS followed 6 months later. I still haven't read the BTA updated draft guidelines so don't know whether this protocol has been revised.

After completion surgery, possibly a couple of months after, thyroglobulin is tested for antibodies and is used as a 'cancer marker' for blood tests, every six months in my case.

Remember to have your ferritin, vitD, B12 & folate checked at your next bloods as nitrous oxide in GA strips B12, and all these vitamins are essential to your recovery.

RAI has caused problems for people, particularly with saliva glands, so I advise you research it fully before requesting or agreeing to have it.

This site may be of interest inspire.com/groups/thyca-th...

[Hidden]

So sorry to hear your diagnosis. I personally know someone who had the same and that was years ago, she is fine now. Good luck x

[wysewoman in reply to Hidden]

Thanks for your post. Its good to know that you know someone who had such a diagnosis and is now fine.

[Discovery]

Hi Melissa

I read the news on your excellent blog and was just stunned for you - just what none of us that have been following your journey wanted to hear. It's a week now since I had the same op and I haven't even been sent an appointment for a visit to see the surgeon for my results. They promised it would be within 2 weeks. After reading about your experience, I feel like sticking my head in the sand. The waiting is so horrible. You seem so strong and positive and I wish you well as you move forward from here.

Valerie

[wysewoman in reply to Discovery]

Hi Discovery,

Many thanks for your thoughts. The wait is totally horrible. I was more anxious waiting for the results than I have been since getting the results! Hang on in there - you will be looking back on this in no time.

Wishing you all the very best,

Melissa

[Discovery in reply to wysewoman]

Thanks, Melissa, you could be right. I've got a hospital appointment now for Wednesday so the wait will soon be over.

The flowers on your blog look wonderful!

Best wishes,

Valerie

[Hidden]

Hey

Yes I am. I had papillary cancer like you, stage one, not in the margins, not in the lymph, totally encapsulated. I also had Graves, hashis, hashitoxicosis, and TED so honestly, the cancer was the LEAST of my worries. It really was 'incidental'. My tumour was 2cms.

I am TSH suppressed, I have my Tg and TgAb regularly checked and my survival chances are still 99% WITHOUT RAI. There's honestly nothing in it in terms of survival chances with or without RAI so I decided not to do the RAI which my endo was totally supportive of, in America RAI is no even offered for my type and staging of cancer. You might want to read up on that.

Everyone is different but by the point I was diagnosed my body had been through so much I decided not to put it through any more. Also be prepared - a TT is a life changing event - I barely think about the cancer, but do daily mourn the loss of my thyroid. It's a tough road.

Rebecca

x