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Should I have my thyroid removed after biopsy result?

Hallo,

I had a fine neddle aspiration biopsy a few days ago and the result is that the one of my two nodules is "suspicious for follicular neoplasm". This is a small nodule 0.8, and my thyroid is working well although I have hashimoto for 2 years now.

Should I have my thyroid removed? If its not cancerous I will have this operation in vein, but if it is cancerous it will be the best thing to do... Please if anyone had the same problem kindly help. I am afraid to do anything at the moment. My doctor saggested another fna biopsy in 3 months, but will this change anything?

Many thanks

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Hiya. My understanding from when my fna came back indeterminate was that it can’t actually diagnose follicular cancer. I remember thinking why even do biopsy. For me they only took half (were convinced it was benign) and a month later did completion (it wasn’t). Had I been told that would happen I’d probably have opted for TT. The nodule was large but weren’t sure if it invaded vasculature so had to take second half. Is hemi an option for you?

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Dear Hay2016 thanks for the reply...

My endocrinologist suggested a new fna but said that if results are suspicious the treatment is TT i.e. as if is is surely found. A second opinion from an oncologist was to proceed directly to TT. But as you said only biopsy of the thyroid will show.. 20% is bad 80% is not.

I just feel scared and confused now..

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Yes it’s frightening but know it’s small and it’s a slow one. I was offered rebiopsy but went for hemi, I wasn’t offered total as fna was inconclusive and I had no risk factors for thyroid cancer. Conversely a friend had total thyroidectomy and hers was not cancerous. It’s all your decision but with a lot more knowledge than I had as I only found this for after. Read and read some more. Butterfly thyroid foundation was good. You don’t have to rush into a decision.

Write all your questions down for when you see consultant next.

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Thanks this is really helpful !

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Hi Styn,

I would ask for the biopsy to be repeated. With ultrasound, the biopsy accuracy rate is 98% according to the medical literature on this subject. The skill of the person doing the biopsy is critical - they must be very experienced. That said, no physician will guarantee based on a thyroid biopsy that you don’t have cancer. The only way they confirm is the pathology report after the thyroid had been removed. They don’t even tell you affirmatively with the frozen section taken in the operating room, although if they see something suspicious they will of course, act on it.

You should know that thyroid cancer is very slow growing and usually physicians will take a wait and see approach, with regular biopsies and ultrasounds as followup. Personally, although I am in no position to tell you what you should do, if it were me, I would ask for a repeat biopsy and wait and watch for the next 6 months. If the nodule grows, or you develop symptoms, then you may need to take action.

There is recent literature presented that suggests some physicians are too proactive in removing thyroid for small nodules suspected of being cancerous, and that many are now being over treated for thyroid cancer.

Here is the link to the study:

ncbi.nlm.nih.gov/pmc/articl...

I wish you all the best and feel better. I hope this helps.

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Thanks Greekchick for the reply and kind words!

As you said this may be an option but psychologically is not easy as you have on the back of your head the fear of cancer. And now I understand what it is..

I will study the link...many thanks again

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You are so right! It is not easy. The other issue to consider is whether or not you have symptoms and whether these are something you can live with in the short term.

I just had a TT 8 weeks ago - I did not have cancer - but I had a toxic multinodular goiter and Graves’ disease. The final pathology report showed precancerous cells - I do not have cancer, but the thought of it is scary and I’m glad it is out- so I feel you when you say how scary it is.

I did not have a choice in my thyroid removal- I was very ill and the goiter was pressing my vocal cords and trachea. It is also not easy to live without a thyroid. The adjustment after surgery is long and complicated - adjusting the meds is not easy. I’m not there yet - but hopeful to be soon. I held onto my thyroid for 25 years because I didn’t want to live without one, and lived with constant ultrasounds and inconclusive biopsies. That’s not the right choice for everyone - and in retrospect, I wish I had it out earlier.

Whatever you decide, best of luck. Keep me posted how it goes for you.

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Hiya

I had a TT for ThyCa and I honestly wish I could have kept my thyroid. Greek Chick is right. Do not panic. You might find this article interesting nytimes.com/2016/04/15/heal...

Life without a thyroid is really tough, I would not wish it on anyone, I have gone from a £100k a year dynamo, to a tired and barely working exhausted person, despite doing absolutely everything a person can do to put things right (with no help from the NHS I might add, there is one treatment pathway but if that does not suit you, you're stuffed).

Cell type is the key thing with thyroid cancer, they are rarely, if ever, aggressive or outside the margins. The new approach in America is not to be so aggressive with treatment. Definitely learn as much as you can and ask lots of questions, but if it was me I'd do absolutely everything to keep my thyroid first, before considering surgery. My German Endo Surgeon (he was lovely, and was at pains to point out the Graves and Hashis would have killed me much quicker than any 'cancer') said, having your thyroid removed is more like brain surgery, its actions in the body are so profound.

Keep posting here, you've got plenty of time (and believe me I know how scary the C word is), so my advice is don't rush.

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Are you in the UK and if so, what kind of hospital center are you attending? If possible, get a second opinion from a thyroid cancer specialist center. It needs to be a center that offers total thyoid cancer care through to radio-active iodine treatment. That way you'll get the most experienced specialists.

A second FNA is a good idea but you could ask if it's possible to have a surgical biopsy to confirm diagnosis before deciding on what type of surgery. This does of course mean day surgery and then a potentially further surgery depending on outcome. A specialist center may be able to give a more definitive answer. You could ask your GP to refer you but research the center of your choice first as it's unlikely your GP will know where to send you. Contact Butterfly Thyroid Cancer Trust for useful advice.

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Thank you for the advice Nanaedake, I appreciate it, yes now I will try and get as much information as I can get..

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I am relieved of symptoms since TT. FNA diagnosed suspected cancer ?

Whilst not 100%am much better from those .

However you say you have no symptoms , under those circumstances I would suggest watch and wait . Make sure you have the best back up during that time from doctors .

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Many thanks Gcart, I will wait for a while but if I don't get any confirmation that there is no risk I will decide it...all the best

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I just wrote you a reply, but realise I replied to someone else on this thread so you might not see it. x

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I had a fnb for a suspicious lump (huge) on my thyroid. It was explained that fnb cannot be conclusive as the area is so vascular but they apply a scoring system, based on the cells obtained, to ascertain the likelihood of cancer.

That wasn’t particularly conclusive either - scoring 3/5. The surgeon decided to take out the affected lobe and send it for histology. He was concerned at its size and also my recent history of breast cancer. He told me it was unlikely to be cancer but he wasn’t prepared to take the risk. He said there was a 1 in 10 risk of it being cancer. I wasn’t unduly alarmed.

A week post op and I’m back at the hospital to learn that it was a follicular cancer 2 cm in size. It was removed the next week.

You can’t calculate risk with this type of cancer. I don’t believe it should ever be left up to the patient to decide. It’s like flipping a coin.

Take care

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Informed consent is absolutely crucial in medicine for huge ethical reasons, having Graves, hashis, hashitoxicosis, TED and ThyCa taught me that my body belongs to me and i say what happens to it, I had a TT but refused RAI, I'm a 'maverick patient' and my Tg results have been nil for the last 7 years, nobody tells me what to do with my body, and I think suggesting patients have no say is a dangerous road to go down. In America, most thyroid cancers are not classified as cancers. You absolutely CAN calculate risk, that's entirely the point nytimes.com/2016/04/15/heal...

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I did not suggest that patients should have ‘no say’ - this clearly defies medical ethics. I said that it should not be left up to the patient to decide. Informed consent is what it says it is. The patient decides after hearing the facts and the opinions of oncologists and surgeons.

I’ve read the link you provided and ‘a rose by any other name’ springs to mind. The absence of the word ‘carcinoma’ cuts no ice.

I was a maverick patient once. I refused a hysterectomy despite medical advice because I thought I had fibroids which could be treated less invasively. Only too late was I proved wrong when uterine cancer spread outside my uterus and led to the dreaded hysterectomy and long term treatment treatment.

My advice is to make sure that your decision is indeed informed - informed by the very best medical advice and your own common sense.

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My decision is indeed informed, by my best friend who is a phd cancer researcher, and my german endo surgeon, who said in any other country I would not have been offered RAI, and I'd risked nothing by refusing it. What's the difference between 'the patient should have no say' and 'it should not be left up to the patient to decide'. To imply that the NHS is always right is to vastly underestimate the appalling state of thyroid care in this country.

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I think we’re broadly agreeing GS. Thyroid care is truly appalling in UK.

My point about informed consent is that there are too many doctors ‘leaving it to the patient to decide’ without a thorough exposition of the pros and cons.

The NHS is not always right and I would be the last to assert that. Neither is it always wrong. An element of guidance is crucial to our well being.

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Dear Girlscout2, thanks I have read all your comments and the link..I appreciate that ..the truth is that my doctors didn't really pressed me and the outcome of the biopsy is not defined as cancer...but as a possibility to be..

But I really wish it turned out clean..

Best wishes

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It probably IS clean, that's the point, wait and see and don't panic. There's a huge amount of bullshit spoken on thyroid cancer, do plenty of research, get in touch with the ThyCa charities, and find out more. Honestly if you are going to get a 'cancer' in your lifetime, 99 times out of 100, this is the one to get. Losing your thyroid is something I would not wish on my worst enemy, I am imploring you to really, really, really be sure what you are doing and WHY. There is absolutely no need to rush.

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Many thanks for your reply Scrumbler, I wish I could avoid this but as you say we cannot play with this ... I wish you and everyone having health problems..especially those who replied the best and to be healthy and strong !!!

I really appreciate your help

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You are not 'playing', what we are saying is know what you are dealing with, and don't be panicked into decisions that can't be undone by the C word, when in other countries it isn't even classified as cancer. Cell type is what you need to know.

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Ok I will ask for this..thank you so much

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I had two of these FNA only 6 months before having my thyroid removed. My thyroid was working perfectly but because of a large nodule 4cm growing downwards my trachea had moved. Both of these tests were clear. I then moved to France and the surgery there is to remove the whole thyroid not half as in the UK. This removes the need for two surgeries which often happen.

The nodule was examined and found to contain 1/5th papilary cancer.

I had to have mine removed anyway because of my trachea, it's a difficult decision.

I had no treatment before the TT and now feel well two years later on NDT.

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Bunnyjean thanks .. your thyroid was working perfectly and had no syptoms but as you say it turned out that you did the right thing..I wish you all the best!

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I know it is scary. I had TT 8 years ago. It was not cancerous. Nodules on both sides. It's a tough decision. I have been through so much since. I hope it works out for you. Don't rush.

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Thank you so much a1glenn, I wish you the best

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Hi Styn,

I had a partial thyroidectomy 6 years ago to remove a calcified nodule on my right thyroid lobe. I had a FNA and was told it was a scale 5 and then it was down graded to a scale 4 meaning 80% cancerous although they could not be sure without it being removed and a frozen section undertaken to ascertain if it was cancerous, what type of cancer it was and the next stage of treatment. The frozen section is normally done during surgery but mine was so difficult to section it had to go for further tests and so I did not have a full thyroidectomy. I got the results 2 weeks later and was told that it was follicular variant of papillary thyroid carcernoma but contained within the lobe and so I didn't need a full thyroidectomy. However, it did trigger other health problems and caused me to have a severe underactive thyroid gland and I do not tolerate synthetic hormones. I've had a roller coaster journey since then and I'm still not well.

As regards you being told it is a papillary neoplasm they cannot be fully sure until it is removed and, neoplasm is a term used now to down grade it to a non-urgent cancer. People can live normal lives without the cancer being removed but if it is causing you problems such as pressing on your wind pipe (mine was much bigger and was causing me to choke at night because it was pressing on my wind pipe and needed removing) it is ok to watch and wait. Thyroid cancers are very slow growing, I was told that I'd had mine for 4 or more years, and so really I could have waited if I'd been given the full facts. Unfortunately, the medics have a habit of scaring patients because when the word cancer is said you immediately think that you are going to die.

I hope you don't mind me asking but how old are you? I ask because most thyroid cancers affect younger people and sometimes if you are older it can be a different type of thyroid cancer than can be more aggressive. This cancer effects women in their 60's + and is very rare. As you have Hashimoto's am I right in assuming you are taking thyroid medication such as Levothyroxine? If so, perhaps a higher dose is needed instead of surgery. I have to take my thyroid replacement hormones to control my thyroglobulin levels so that my cancer does not grow back because I still have my left thyroid gland.

I have to sign off now but try not to worry and I don't mind you PM me should you need someone to confide in. Thyroid cancer is a lonely journey because it is so rare and there is no-one to talk to about it.

Bye for now,

TT x.

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Dear ThyroidThora, thank you for the support, the reason I feel this is a tough decision is that I am 46, with thyroid working ok now, I don't take any medicines..but on the otherside since the biopsy is not clear I have to consider this risk..definitely if and when I decide to proceed with an operation I prefer TT in order to eliminate the risk.. even in this forum the outcomes are different...

I thank everyone and wish the best!!

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Hiya,

I think the options open to thyroid patients are very different depending on where you live. Some endocrinologists opt for watch and wait and others can be a bit more maverick in their approach. I was 49 when I had my op and there are times when I wished I'd just left it inside and waited until there wasn't a choice because I've been so ill since. I was seen by an ENT consultant who'd never had any experience of thyroid cancer and he referred me to the hospital in his LA that had the specialism. I wasn't really given any information and was rushed into making a decision on the spot without considering my options. If you are not ready then it might be best to wait and get yourself prepared for it because it can be a roller coaster ride that isn't very pleasant.

Good luck and you are welcome to PM me if you need help.

TT x.

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Hello Styn,

There are so many Thyroid problems out there - I had severe palpitations no biopsy's etc the choice I was given was surgery or Radio Active iodine - as I was in the workforce back then after three Drs. advice I went for Radio Active Iodine only trouble was they overdosed me - gave me too much - that was about 40 years ago - Apparently it is illegal to have the second dose these days - Looks like I was one of their guinea pigs as the saying goes. I haven't gone unscathed as had most of the troubles that you all write about. - I am a very strong person I have had to be so maybe that is why I am still here enjoying life everyday as it is a bonus really. Please stay positive everyone and trust your instincts.

Happy Easter to you all.

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Dear JMTS thank you, all shared thougts in this forum are so valuable.. Happy Easter to you and everyone here xx

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I was diagnosed with Hashimoto's and did the fine needle biopsy which of course was inconclusive as they only biopsy 2-3 nodules, I had several. My doctor suggested removal of my thyroid as they suspected cancer. I had my thyroid removed two years ago and have been fine ever since. It took a while to get my Synthroid regulated, but it's been fine. I asked my doctor if you were me what would you do and he said that he would have it removed so I did. Good luck to you.

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Thank you for replying ttaylor000528, Its good to know your fine after this and comforting for me , all the best!

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I dont know where u are located I am assuming the UK. my father had actual thyroid cancer and it's spread so slowly that he lived to be 92 and was actually diagnosed at 60 and it had progressed pretty far at 60 he never had any treatment. Also he did not die from cancer he probably had a heart attack because he died in his sleep. I have several nodules all over my thyroid but it's operating normally. I'm not sure how old you are but having your thyroid removed will give you pretty much a life of hell with many other problems. I am a nutritionist if you were 2 improve your nutrition many things change. I think people all have a different idea what improving their nutrition is but it's definitely taking a very quality supplement and eating 80% non acidic Foods and eating almost entirely organic the body will change and respond to this.

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Also I know here in the US that our doctors know Pharmaceuticals in and surgery. and almost no nutrition. So removing a thyroid would always be in my opinion and my experience what they would recommend. If you take care of your body parts they last a long time it's just that people do not do this. The food has degenerated quite a bit and people just do not get the nutrients that their body requires. I've been doing this type of a business for 38 years and have seen amazing results when people make some changes. You are welcome to reply back to me and I can give you some nutrition advice.

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Thanks adam1850, I also strongly believe that one must be careful with what he/she eats..I don't eat meat nor fried or processed food..my weight is normal and after having diadnosed with hashimoto for the last 2 years I tried to exercise more and include some vitamins like vit D magnesium also selenium for a while.. the problem with me is stress..and now its getting worse..

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Well, your post certainly raised an interesting debate and some valid points and differing opinion.It’s up to you to make up up your mind on the basis of information you’re given and which you acquire yourself.

At the end of the day it is your decision and you should not be badgered by anyone, medical practitioners or members of this forum.

I will agree wholeheartedly that life without a thyroid is very hard to endure. Replacement hormones will seldom do the job of your own thyroid. It’s taken me seven years of ill health to take matters into my own hands and take NDT. I am beginning to feel better but I will never be as I was before.

I regret having no thyroid, just as I regret my womb being removed when I was of childbearing age and the loss of a breast. However, had these procedures not been done I wouldn’t have been here to argue my point.

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Dear Scrumbler..you surely had a lot to endure thanks for your replies and I wish all bad things are now over.

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Thanks Styn. Having a Total Knee Replacement next Tuesday - but optimistic as always 😊

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Best of luck my dear xx

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I had a large thyroid nodule for ten years. They monitored it via ultrasound and fna. The last fna came back as yours, suspicious for follicular neoplasm. All doctors recommended a TT. I did lots of searching and asked many questions, one on this site. Ultimately, I decided on only a partial thyroidectomy of the suspicious nodule and left side of my thyroid. I decided on a partial thyroidectormy in part because of my concern on how a TT would affect my Hashimotos and also because of my concern about damage to my parathyroid glands. (As I understand it, the four parathyroid glands control your blood calcium.) I had the surgery four weeks ago without any issue other than now massaging my scar to minimize the scar's appearance. I was already on thyroid meds and, to date, I am on the same amount of meds. Overall, I feel fine.

The decision you must make is a difficult one. I agonized over my decision for over a week. Do your research and do what's right for you. Best of luck.

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They found one nodule by me . After doing biopsy it came back inconclusive . I went to another Dr with my results and put me on T4 for six weeks to see if the nodule would shrink . It did not and suggested surgery . My surgeon in advance said if pathology comes back cancerous after removing the nodule he will go ahead and remove both sides .

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Don’t, I just did it and I regretted it as it was benign. When suspicious there is still 80% chance that is benign and probably is, unless other things like shape or structure suggest otherwise. They found follicular cells in mine and that is why was suspicious, but those cells are normal. In the states there is a dna test which is designed for this cases, so people don’t lose important organ just because of suspicious finding. I wish my doctors had more faith in that test or knew more. It’s important organ so don’t take it out unless it’s clearly a cancer. Only 5%of nodules are cancer, so make sure it is. I wish I have never listened to the doctors. They do whatever is easier for them. Take care

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