Thy3f lesion surgery opinion

[SuniYash]

I have been diagnosed with having a multinodular goitre and hypothyroid (underactive). I'm on 100mg of thyroxine which I take in the morning. My endocrinologist sent me for an ultrasound. One of the nodules looked different so I was sent for an FNA. The result was a thy3f lesion and indeterminate result.

I was sent to see a NHS surgeon who said to remove half my thyroid and there was a 5% to 10% chance it maybe malignant. He said there are risks of removing all thyroid and its a bigger operation.

Shocked and wanting to avoid surgery I went for a second opinion from a private surgeon and he suggested removing the whole thyroid gland because then I don't have to have two surgeries if it turns out to be malignant and also because I have a multinodular goitre he said they are more likely to grow so get it removed. I also have hashimitos so he said my thyroid will give in anyway if it hasn't ready done so. He also said with a thy3f there is a 25% chance of malignancy. He said removing all at once reduces risks of going back into surgery if it turns out to be malignant.

Separately I asked about robotic surgery which is scarless but there are very different opinions on this. My NHS surgeon said it was rubbish and has left people with their arm not working. There is 1 surgeon in the UK who does it and his surgeries seem to be working. He does only 2 a month. Has anyone else had robotic surgery and what are your thoughts?

I am thinking conventional surgery removing half my thyroid instead of whole. If it turns out to be malignant I'll take that chance and go back in to remove whole. Will the scar be worse if they have to operate on me twice if it turns out to be malignant?

Has anyone else been in this dichotomy and what were your experiences and thoughts.

Are there any suggested alternatives I can pursue instead of surgery that anyone knows about?

Thanks,

[Clutter]

SuniYash, if the nodule isn't troubling you in other ways you could ask to wait and watch and have repeat FNAs every three months to monitor. There are several members who have had 3 indeterminate FNAs and then found the nodules to be benign when biopsied after hemilobectomy.

My FNA was also indeterminate but hemilobectomy was scheduled to remove the lobe as the nodule was compressing my trachea. The biopsied tumour was malignant so completion thyroidectomy was scheduled 3 months later. The original scar was reopened and slightly extended and is a small very faint white line a couple of cms in the hollow of my throat/neck.

I hadn't been on thyroid meds prior to completion and the Hashi hyper/hypo flares made me very unwell. They stopped completely after thyroidectomy, presumably as there was no thyroid to target but possibly also because I was on TSH suppressive doses of Liothyronine until I had RAI to ablate remnant thyroid cells 3 months later.

I've not heard of robotic surgery.

[larksnest in reply to Clutter]

Hi I see you have Hashi/hypo flares and wonder how your doctor/ endo dealt with this. I have had an underactive thyroid for over 30 years and for the past 2 years (most of which was undiagnosed), I have been hypo. My endo changed my meds and I became severally under so he raised my meds, this was about 6 weeks ago and I am now begining to feel hypo again. Originally I was on 150 of levothyroxine a day and the endo put me down to 50 levothyroxine a day, I am now back up to 100 levo per day. I think I must be very sensative to levothyroxine.

[Clutter in reply to larksnest]

Larksnest, my GP and thyroid surgeon were of the opinion that my symptoms were non-thyroidal because my bloods were unequivocally euthyroid so I got no treatment until I had completion thyroidectomy. Doctors don't seem to consider that having antibodies can cause symptoms and mine were mostly hyper but could swing hypo very quickly. A lot of members find that a gluten-free diet helps reduce Hashi flares and antibodies.

If you post your thyroid results with the lab ref ranges in a new question members will advise whether you are optimally medicated.

It's very unusual to reduce Levothyroxine dose by 100mcg in one increment. I was deliberately over replaced to suppress TSH which made FT4 >34 but dose was only reduced in 25mcg increments. Usual dose adjustments are in 25mcg increments every six weeks.

[Nickinoo1]

I found a lump in my neck last September and after two FNA and 1 core biopsy all of which were indeterminate I had a hemi thyroidectomy at the end of Jan.

I had other issues that pushed that decision - no voice for 4 months, difficulty swallowing, after the op realised how much my breathing had been affected, salivary gland infections, vocal chords not closing, sternohyoid muscle protruding.

Before the op I was so ill and really not on the planet for around two months but GP only worked off TSH which was in range so no meds for me and I self treated with NDT to good effect. He told me it was all in my head but I fought on got another referral and a week later had an urgent op. Stopped meds about five days before op and my TSH was suppressed even then as they checked me for hyper thyroid shakes/ tremors! But I felt so much better. Benign result and a scar that is keloid and further appt for that next month.

After the op I felt bloody marvellous. It was good to be alive, to speak and breathe normally. Now however three months down the line my TSH last test was 8.9 and T4 10 something - sorry memory failure - and I am struggling. I have finally been on Levothyroxine for two weeks and feel awful. The side effects are not pleasant and I have to give the time for the medication to work - just hoping something does soon. I work crazy hours, have a family and many creatures to take care of. I am pressing on but its getting harder.

Would I have the op again - yes absolutely. It made a huge difference and who's to say I could have been part of that small percentage who had a cancerous tumour. My challenge is to get my optimum levels sorted and with the help of the kind people here I will.

All the best to you

[mrsm49]

I was diagnosed with multi nodular goitre couple years ago, they offered a thyroidectomy straight away even though biopsy was ok and seemed annoyed I chose to have regular FNAs instead. Eventually it got bigger and I agreed to the op. Had op 3/12/14 and it turned out to be retrosternal but benign. I too felt better after op as hadn't realised the extent it had been affecting swallowing. The scar is good as they glued surface so no stitch or staple holes. Medication is another matter was started on 100g as told that's all anyone needs (!) Had increasing hypo symptoms and was upped to 125g in early Feb. My next appt came thru for May so I upped myself to 150g 7 weeks after last increase. Had to tell gp as needed more tablets, he said I'd been over medicated on 100g, he's let me stay on dose till I see endo but has booked me a bone scan. I can see arguments ahead which is stressing me, there is no way I can cope or work on a lower dose.

Now , my youngest sister end of last year was in same position as you, an indeterminate biopsy and was advised to have a hemi. She was told that even if benign she would eventually have the other half removed but they would go through same scar. Luckily it was benign,her scar even better than mine (although I keep reminding her she is a month ahead on healing time -bit of sisterly competition going on!) and she doesn't seem to need thyroxine yet. She's happy now that she only had a hemi having seen what I've been through, she has three young children and a busy self employed hubby so it would have been very difficult to cope with hypo hell!

My mum is hypo, still has her failing thyroid and struggles with medical profession, she may end up self treating. She believes that at least after thyroidectomy you have more chance of getting what you need to stay on an even keel, which is all any of us want.

From what I can see, the operation itself is not the problem, it's the balance of medication afterwards that is. No one ,in the medical profession anyway, told me this they still say it's a simple process of checking TSH levels, if only eh! Just as well this site exists , especially the admin team who are so helpful.

So really I would say, look at your personal circumstances, although if I'd had a indeterminate result I'd play safe. I wish you luck and am sure you'll b fine x

[Churchie]

I was in exactly the same position last year and I would strongly advised against the full thyroidectomy. We sometimes have a lot of complaints against the NHS but the private sector can be just as bad in its eagerness to over treat. The operation itself isn't too bad and not that painful, it is living the the side effects afterwards that is harder so if you need to have two operations then that to me is a risk worth taking to be left with some thyroid. I had a hemi last November after a 3f biopsy and like you was very against surgery. If I had that choice again I think I might have done what clutter advises and wait and see for a bit but you get yourself in the system and it is hard to step off. It depends on whether it is causing you trouble or not. If not there is no need to rush.

With a 3f I was advised that there was a 25%-30% chance of cancer, but even so I was amazed that the standard protocol is to remove half of what was a very important organ without knowing for sure. However my gp advised that this comes down to individual attitude to risk. Some people would want the whole thyroid removed if even there was a 5% chance whereas others would happily live with much higher chances but to keep the thyroid. There really is no other type of treatment, I did exhaust looking into the possibilities. My sister had a biopsy result of 4 (cancer chance 80%) and they wanted to give her a full thyroidectomy, and I lot of pressure was applied to her, but because of my experience she insisted on half. Turned out to be benign and in the check up afterwards the surgeon said to her "good call!" - as if it had been some kind of lucky win! She is lucky that she doesn't need to take any medication but so easily could have been living without a thyroid now with all the problems that entails.

It is a very scary time and I understand what you are going through but people on here have given me wonderful support and advice and meant that I have felt empowered to take charge of my condition. PM me your number if you would like to talk.

PS my scar is practically invisible after 5 months.

[Janemiddleton]

Hi, I've had exactly the same as you just over twelve months ago. After the FNA it was confirmed it was a F3 diagnosis...I was told chance of malignancy was 30%+.

I had a partial thyroidectomy,.... and to be honest have felt awful ever since....(although on the positive side the scar is much better than I'd thought. The pathology post operation confirmed 1) Hashimotos, 2) benign nodule (phew!), but 3) a "co-incidental" small piece of papillary cancer in the half thyroid. All has been OK cancer wise - it seems to be gone now, but the operation and removal of the half thyroid really has been the straw that broke the camels back! The surgeon was sure I shouldn't have the other half removed. ...and I haven't.

I'm really feeling terrible, hadn't got on with Levo - made me feel worse really, put on more weight. Am now trying NDT - too early to confirm how that is going really.

I really wouldn't suggest you have any more out than you need!...you are increasing the risk of damage to the calcium glands and damage to vocal chords.

Good luck with it all!...happy to talk if you want to?

[Pepekins]

Having had half of my thyroid removed in 2000 (simply because there was a benign lump which kept enlarging) and a small papilliary cancer was found after the op on half of my thyroid. I then went on to have the other half removed three months later. The op is no big deal and the scar hard to see. However in hindsight, with all the info I have gained from this site, and also nobody ever telling me if I had any cancer on the remaining half!!! I would try and hang onto half of the thyroid gland. I had no idea just what a crucial gland this is. Because of being started on 150mcg daily and only of late having the dose reduced, I have had all sorts of problems culminating in a hip replacement! Doctors are only too glad to whip bodyparts out. They probably mean well, but I have had a hysterectomy also (no cancer) when really a repair should have been done. In years to come I would like to hope that doctors try and let patients hang onto their organs unless there is a very good reason why they should be removed and there are no alternatives.

[ThyroidThora]

Hi

I had my right thyroid lobe removed for suspected thyroid cancer just over 2 years ago. I had a calcified nodule that when biopsied with the FNA came back as a 5 and then down graded to a 4 because they weren't confident with the test. I was told that I had a 80% chance of malignant cancer and that they would remove the right lobe during surgery and conduct pathology tests to confirm if it was malignant or not. The pathology report during surgery was inconclusive and so only the right lobe was taken. If it had come back malignant they would have taken the left lobe too and then done radioactive iodine treatment a few weeks later. As it happens, the further tests came back with a positive diagnosis for follicular variant papillary thyroid cancer but they have not removed the left lobe because they think the cancer was contained within the nodule. You could ask for the tumour to be tested during surgery and then if it's malignant they would proceed to remove all the thyroid gland in the one operation. But, be aware that thyroid surgery is a very long operation. I was in surgery for 4 hours having the right lobe removed but to have the whole lobe removed takes about 8 hours or so.

Good luck,

TT xx.

[virginia56]

I lost half of my thyroid 10 years ago and my another half is fine, but never will forget my self that I listen doctors and went for operation, because you have to remember:

they will take out your thyroid, but it will not fix any problem, because the roots of your thyroid problem is not in thyroid but in other organs like stomach, adrenals, pituitary.

[SilverAvocado]

Really agree with Virginia. I suspect I've got more complicated problems, and the cancer is just a symptom. . My 2 year anniversary of my first op is next week, and not much closer to getting sorted out. Full story of my treatment is in my profile.

I don't know the terminology most people are using. Can't fully remember, but mine was known to be cancerous before I went in for for the op. I think the deal was that it was over 3cm or something, and therefore into the danger zone. If it had been 2.5 there might have been an option to leave it. So I had the one side removed. Then the argument was that there was evidence cells had tried to leave the capsule, so the best thing was to have the the other side removed, so that I could have the full radioactive iodine - that's only possible if you have no thyroid at all. Slight muttering cancer might have already spread, but later clinicians scoffed at the possibility, as it's so remote.

Is radioactive iodine on the the table table for you? That was the only argument I was really persuaded me to have my entire thyroid removed - the security that the cancer would be spotted instantly if it returned. Tho I have no experience of Hashi's, so I guess that's another set of arguments.

I had a small papillary cancer next to mine, too. Interesting to hear that several people have had that, I always wondered if it was a clue to something, but maybe it's just common. My overall cancer was the next stage up - I was told there were 3 categories of danger. Papillary the least. Mine, the middle, might be medullary, and another worse one . So mine was the middle category, but large so that it started to count as maybe the upper category. My surgeon always said that if it wasn't for that, it wouldn't *need* to come out. But it sounds like lots of people had less damgerous cancers removed. So maybe you can find a second opinion somewhere that does advise watchful waiting. Or maybe my consultant was spinning me a line

The scar is really no big deal. I was half hoping for a massive pirate scar That would help in understanding and making others understand that it's a serous illness. It's almost invisible. The operations were also not so bad. I was never exactly in pain, tho I took max paracetamol for many weeks. And got used to being in bed all day. I'm now not scared of the dentist at all.

My situation is that I'm still not much better than I was 2 years ago. It took me just under a year (April to February) to complete both surgeries and the RAI. My consultants did not care one jot to get me up and running during that period. For most of it I didn't even get a TSH blood test, even tho I was complaining a lot and off work for 8 months. Everyone I met in waiting rooms was also off work. At least 6 months I think. But later a consultant told me a year is the norm. I ended up going back for a bit - 3 afternoons a week, done from lying on my spare room floor. And eventually lost the job. I'm nowhere near being able to go back. I go to a few classes and groups, but can only really do 2 or 3 activities a week. Most of my energy in preparing food - coz that has to be done.

My consultant has now officially said she can't do anything, so I'm starting to look into other options. Difficult because going on the Internet, concentrating, all the rest of it, are on my list of of things I can't much do. Writing this on on my phone, which which is a god send as it's small enough to hold, and to use lying down. Of course this is the the same consultant who looked at me blankly when I suggested that trying to save part of my thyroid was a goal - I think of all the hassle dentists have gone gone to to avoid taking teeth, and this is is an organ that's essential for all of living!

[Salsa2014]

Hi. There is a gene expression test by Afirma that prevents 50 per cent of people with an indeterminate result from having this surgery. I wish I had known about it prior to my hemi-thyroidectomy for a 3f result as well. It is available privately in the USA and some other countries. If you google 'Afirma' it should answer your questions. It is a respected test for indeterminate nodules that has a 96 percent negative predictive value. In other words its much more accurate at 'ruling out' cancer than 'ruling in' cancer. I'm angry that it's not available on the NHS and more angry they do not let patients know about it. I would have gone to the US and had the test, had I known. They also don't let patients know that benign nodules can be lazered in Italy w/o affecting the thyroid. They are happy to let patients risk life long hypothyroidism when this could be avoided. I hope you make the right decision for you.