Anyone on here had secondaries from thyroid cancer?

[Linda1969]

I am waiting for a completion thyroidectomy after a 2cm canced was found in my right lobe. This as been going on for a year now. Has anyone had secondaries?

[Hidden]

Hi Linda

Sorry you had no replies - people tend to get a better response to questions posted in the Questions section.

Hopefully someone will pick this up from Latest Activity...

L

x

[roslin]

Hi Linda

I know how difficult it is to wait for a thyroidectomy or any surgery for cancer. My cancerous nodule was 2 cm as well and I think that that is a fairly small size, it had not spread. I have also had kidney cancer and I was told by the surgeon that that cancer grew about 1 cm a year which I think is a quite quick growing cancer. I know that there are different types of thyroid cancer and some are more agressive but papillary which is the most comon one is also the slowest growing and the older you are the slower it grows. I may have got these facts wrong and I would be very happy to be corrected. I was also told a while ago that they dont remove the whole thyroid if the cancer is confined to one lobe and is small(that was not in this country so it may be differnt here).

I am not quite sure if you mean that you have been waiting for the surgery for a year which would be unusual. A confirmed cancer is usually operated on quickly. They would not leave you waiting for an operation if there was any risk of spread. If I was you I would ring the surgeons secretary and ask why you are waiting so long and you are very concrened about the cancer spreading.

Roslin

[Linda1969]

I have follicular thyroid cancer. What this means regarding spreading, I'm not sure, differing information. Nodules on both lobes only ever one nodule on one lobe tested.

[Hidden]

I had an ultrasound in June to confirm hahimos and 1.8 cm nodule found. 2 FNAs indeterminate so I am awaiting surgery. I will half removed and If follicular cancer is found I will have the rest removed I think within about 4 weeks. I dont have any other nodules but the rest of thyroid will be removed automatically. This type of nodule is very difficult to diagnose and the only way to determine is removal and biopsy. I think spread of the cancer is determined if the nodule has been perforated and it tends to spread to lungs or bones. My FNA has highlighted abnormal cells that are where they should not be that suggests possible perforation They cannot determine malignant or benign. 90% chance benign, 5% pre cancerous and 5% follicular cancer. Just have to keep fingers crossed x

[Clutter]

My completion surgery was performed 3 months after the hemi-lobectomy was positive for Hurthle cell carcinoma, a variant of follicular. The 2nd lobe was not cancerous.

Are you saying your remaining thyroid is positive for follicular cancer as well as the removed lobe? Follicular is more aggressive than papillary which can often be left and watched. I'd be concerned about the cancer spreading to surrounding lymph nodes and organs if you have a confirmed f.cancer DX of the remaining lobe. Cancer treatment is supposed to take place within 18 weeks of diagnosis.

[Hidden]

Follicular does not usually affect lymph nodes. Papillary tends to spread this way. Follicular spreads via blood and veins from what I have been told and regroups in bones and lungs which is supposed to be very rare

I have not been diagnosed yet. Abnormal cells have been found that they can't determine whether benign or malignant. 90% chance be benign, 5% chance pre cancerous 5% chance cancer. Had 2 indeterminate FNAs. 2 indeterminate results and they perform surgery for removal of half of thyroid. They biopsy it and as i have a nodule they will biopsy that also. They are checking for perforation of the nodule which could be an indication of spread and if results are malignant they will remove the other half within 4 weeks automatically.

[Marz in reply to Hidden]

....I would be most interested if you could point me in the direction of the information of thyroid cancer spreading to the bones. My daughter had her thyroid removed and has had two chondroid tumours removed from her fibula. She has been told there was no connection with her thyroid cancer and removal. Apart from these issues she enjoys good health and has just started a new and demanding job.

Wishing you well....

[Linda1969]

I guess what I am saying is with a FNA on my right lobe in June 2012 cell type 2 and Dec 2012 cell type 3A and no further biopsies to this date anywhere, a 2cm cancer at surgery on October 17th 5 weeks to get a result, having 2nd surgery next week. Firstly is the risk of further cancer, a higher risk than the surgeon is making out? I have nodules in my left lobe that have never been tested!

[Hidden]

I don't think they can tell these things until they biopsy. The particular type of cancer is very difficult to determine between malignant and benign. Did you have thyroid trouble previous to diagnosis? We're you on thyroxine previously or are you now? I have always had a high TSH. I am not on thyroxine but I am now underactive we want to sort nodule out first. Thyroid cancer has a very good recovery rate. I went to see my GP and his brother had had it. 5 years ago and had it removed, on thyroxine and fit and healthy now. Rod Stewart had thyroid cancer, Claire Balding had it and she had radioactive iodine treatment, Kim Cattrell had it and George and Barbara Bush. They are all fit and healthy and still here. Try not to worry. At least it will be all over for you by Christmas. Next year can be a new start. I read somewhere that it should not be called cancer it should be called thyroid cell mutations. It is not treated in the same way as other cancers and it does not develop the same way as other cancers. Hardest bit is after the op and getting the correct dosing with the 'magic pill' thyroxine. X

[Linda1969]

I've heard about problems with T3/T4 combinations, just got to think of myself as a mutant ninga turtle going forward, wonder what super power my radioactive iodine will give me.

[Hidden]

That's if you need it. Not everyone does. I have not got to that part in consultations yet I have been in total shock. We were laughing and joking about should we do a fine needle aspiration it will be benign, go on then you are here now well might as well do it. Then it had to be repeated. 4 weeks later got the news indeterminate again. I could not stop vomitting when i heard. I keep thinking we have missed a sequence here. I was totallyunprepared.

Are you with an Endo at the moment? Have you been on thyroxine? If you are not with an Endo I would make appointment with GP and say you would like an appointment with an Endo. Ask surgeon who is going to be monitoring your progress on thyroxine. Lots of GPs have very little knowledge of thyroid some are billiant. Perhaps try to get email address of thyroid cancer nurse at hospital. Then you have someone you can contact if you have any questions. Roll on Next Year!

[Linda1969]

Yes I believe the Endo refered me to the surgeon but how knowledgable she is I don't know. No thyroxine as yet. Thyroid was functioning fine! Don't know! Think I will phone the thyroid nurse now the shock is dispersed and I am getting my fighting spirit back xxx

[Hidden]

Hi there

I had a TT for Graves and whilst in there they found a 2cm papilliary carcinoma, follicular variant. They took the whole gland and my lymph nodes in my neck to be sure. I'm fully TSH suppressed for ThyCa and have regular (three monthly, now going to six monthly) tests for Tg and TgAb. My best friend is a cancer researcher PhD and she and I reviewed the literature and in my case (stage one, not in the margins, totally encapsulated, not in the lymph) there was less than 1% in it in terms of survival rates with and without RAI. TSH suppressed, my life chances are as good as a woman who has never had ThyCa.

On that basis I refused RAI and decided to watch my markers - on the understanding I can always change my mind. I appreciate my decision is less common and initially I agreed to RAI but it's such a massive dose that I declined in the end (as I have TED I didn't have to come off my meds to inflate my TSH before the treatment, normally they let you go VERY hypo to improve uptake, so they were going to do Thyrogen injections).

I went for my first injection, and I'm grateful that the matron who saw to me was actually really horrible to me, it kind of jolted me awake, and so I sat in the lead lined room and it really hit me what I was about to do. I changed my mind the day before the procedure! My doctors were wonderful about it and said in the USA cancers of my type are not treated with RAI and it is offered automatically here as it on the treatment pathway (a treatment pathway is agreed by a consensus of medics) although the evidence for RAI in a case like mine was controversial ....

I'm not saying you should refuse RAI at all - please don't misunderstand - I'm just saying that cancer is a very scary word and patients should be supported to come to a decision that really is the right one for them. I have had no doubts whatsoever about refusing RAI at all and I barely think about my ThyCa now. The Graves / Hashis / Hashitoxicosis would have killed me much quicker!

Best of luck to you whatever you decide.

Best wishes

Rebecca

x

[Orangelady1 in reply to Hidden]

I wish I spoke to you before I agreed to the RAI! I was never well informed, was just told I had to do this so I got on with it. But,.......I hated every minute of it! Was in the lead room for 4 days, felt like a caged animal, then after 4 days had to have a full body scan, by which time I totally lost it and had a panic attack during scan! When I went back 1 year on for a further body scan, they kindly gave me injections so I didn't have to do without my Levo . Also has a sedative to go on scan machine this time. Wish I knew your info before going thru all that! Keep well

[Hidden in reply to Orangelady1]

Orangelady1

Ah bless you! I know it's terrifying isn't it. I did worry about it initially and my lovely endo told me I'm now a 'maverick' patient but he was so supportive. I hate those scanners as well!

Keep well too

x

[Orangelady1]

Hi, I had a 3cm nodule on left lobe. They told me they couldn't determine by ultrasound or when I had needle biopsy done for sure what it was, but they didn't think it was nasty. I had a lobectomy done, and surgeon still thought it was fine. But after proper biopsy from surgery turned out to be stage 1 papillary ca. I then had a TT 4 weeks later. Had RAI 4 weeks after that. That was 2 years ago, all my scans were clear and now discharged from specialist. Please don't worry, they told me secondaries are extremely rare. Keep well

[sorrel89]

I was diagnosed 24 years ago to the day, Papillary carcinoma that was metastatic and had invaded my right cervical chain but it was encapsulated within the thyroid but a huge mass so a radical neck dissection was done including striping main neck muscle and all nodes on both sides, jugular vein parathyroids.....etc 5/6 RAI cannot remember now ...So it had advanced out of the thyroid...many many ops followed...fingers crossed no secondaries...take care