The time has come to make my decision. - Thyroid UK

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The time has come to make my decision.

Centralparklady profile image
ā€¢40 Replies

Hi everyone

I saw my surgeon last week. All my tests are done, and he want's to remove half of my thyroid gland.

It's the left side were I have a 3cm nodule. I told him I need time to think about It...still in shock.

I really wanted to avoid surgery, I thought changing my diet and being on my medication would be enough.

But 10 to 20% the nodule could be cancer has frightened me... any words of wisdom from my friends??

Brenda x

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Centralparklady
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Pricey1974 profile image
Pricey1974

Hi Brenda

I'm sorry to hear you've had some unsettling news. I had half of my thyroid removed 2 years ago due to a 4cm lump. I had the FNA prior to this which came back as "suspicious" . Luckily my hurthle cell adenoma was benign.

Nobody would choose to have an operation , however your surgeon has your best interest at heart.

Why does your surgeon think it could be cancerous?

Thyroid cancer is easily treated if caught in time . Surely it's a no brainer Brenda ? Have it removed and get rid of it . The operation is not to bad at all, and my scar is almost invisible . Good luck!

Lisa x

Centralparklady profile image
Centralparkladyā€¢ in reply toPricey1974

Hi Lisa

Thanks for your reply, My fna come back inconclusive and the nuclear med scan something not quite right.

It is a no brainer really, feel better knowing you have had it done and many others on the site.

How long is recovery for this type of operation?

Pricey1974 profile image
Pricey1974ā€¢ in reply toCentralparklady

Hi

Recovery was very quick actually. Just a very sore throat when I are/swallowed for the first few days. I was back to work in a fortnight . You will be fine . I was in hospital for a day . I went in at 07.30 and was allowed home at 1900 . Some surgeons like a stay overnight , but I felt fine . I have just started thyroxine , nearly three years later. Don't be fobbed off if you feel tired etc all the time after your op. After seeing alot of GP 's who insisted my bloods were 'normal' I paid to see and endo consultant who started me on thyroxine . He was amazing . Treat the patient not the numbers! ... Good luck Hun , let me know how it goes

Lisa x

Rebec profile image
Rebec

Surgeons know one thing: how to operate. I haven't yet met one surgeon who wouldtell someone not to go under the scalpel. Hope there are members in our forum who have more experience than me who would be able to advice you but at the end of the day it's your body, your decision. I was told that thyroid cancer is easily treatable. Being under total anaesthetics has its own risks. I don't understand why one can't have an MRI instead of having an operation.

Rebec profile image
Rebecā€¢ in reply toRebec

Are you located in the States?

Centralparklady profile image
Centralparkladyā€¢ in reply toRebec

I am in England, thanks for your reply.

Pricey1974 profile image
Pricey1974ā€¢ in reply toCentralparklady

Hi I'm in England too! I can recommend and excellent endo consultant

Lisa x

Centralparklady profile image
Centralparkladyā€¢ in reply toPricey1974

Thanks Lisa, were about in England are you?

I live in the north west....Liverpool.

Pricey1974 profile image
Pricey1974ā€¢ in reply toCentralparklady

I'm on the south coast ... West Sussex. šŸ˜€ bit far for you to come and see my endo consultant. Truly an amazing guy. Professor Michael Cummings . Keep well Brenda and let me know how you get on! X Lisa

Centralparklady profile image
Centralparkladyā€¢ in reply toPricey1974

Thanks anyway Lisa, will keep you informed, kind regards Brenda x

humanbean profile image
humanbeanā€¢ in reply toRebec

An MRI is just a type of scan. It won't do anything to a nodule in/on the thyroid.

Rebec profile image
Rebecā€¢ in reply tohumanbean

I know it is a scan but my message says 'instead' of an operation. I mean that one should be able to have an MRI and be sure if we're dealing with cancer or not. I asked my doctor why can't MRI be used but I am not sure I understood the reason why.

Clutter profile image
Clutterā€¢ in reply toRebec

Rebec, MRI is a diagnostic scan, it isn't used to treat conditions. Surgery is required to remove malignant nodules.

Rebec profile image
Rebecā€¢ in reply toClutter

Clutter, I mean exactly that: to help with the diagnosis. It will be by far less invasive than an operation with all the eventual side effects. If no cancer is to be found after an operation, then the patient has already lost half of the thyroid and maybe also two of the parathyroid glands as well (according to what my endo warned me about).

Clutter profile image
Clutterā€¢ in reply toRebec

Rebec, I would have suggested further FNA testing may be preferable to rushing to surgery but CentralParkLady has also had a nuclear scan indicating potential malignancy.

Thyroid surgery is complicated and there is always a risk of parathyroid damage or loss and of damage to the vocal chords but that has to be balanced against the danger of malignancy spreading outside of the thyroid gland to nearby lymph nodes and organs.

saloplass profile image
saloplass

Dear Brenda, this is a no brainer really. Do not be scared, if your doctor has recommended partial removal, then go for it - quickly..

Centralparklady profile image
Centralparkladyā€¢ in reply tosaloplass

Thanks I am ready to get it done as soon as possible.

riannabri profile image
riannabri

Have you had a FNA ?

How have they determined cancer may be present?

Centralparklady profile image
Centralparkladyā€¢ in reply toriannabri

I have had FNA and a nuclear med scan.

Surgeon said something not quite right.

halerm profile image
halerm

Brenda,

So sorry to hear that you will have to have surgery. It must be so worrying. I can't really comment as I have never known anybody have the operation. If the surgeon says that this is the case I'm afraid you will have to go ahead with it. I believe it is quite a straight forward op so grit your teeth and go for it. Not a nice decision, but if you are otherwise healthy I am sure you will get through it with flying colours. The very best of luck to you.

halerm

Centralparklady profile image
Centralparkladyā€¢ in reply tohalerm

Thanks for your kind words Halerm.

Clutter profile image
Clutter

CentralParkLady, Ultrasound scans can show that a nodule looks suspicious but a fine needle aspiration biopsy is needed to confirm the presence of malignant cells.

Have you had an FNA? What was the result? Also, does the nodule cause you any pain or make swallowing or breathing difficult?

Sorry for all the questions but it will help advise you if you can answer them.

In the meantime, IF there is malignancy, thyCa is very slow growing so you have time to consider options and don't have to be rushed into making a decision.

Centralparklady profile image
Centralparkladyā€¢ in reply toClutter

Hi Clutter

I have had the FNA and it was inconclusive, so I had the nuclear medicine scan. So have had all the tests and the surgeon wants to operate, so as everyone is saying its a no brainer. Will I end up being hypo clutter?

Clutter profile image
Clutterā€¢ in reply toCentralparklady

CentralParkLady, no the remaining half thyroid is usually able to produce the thyroid hormone you need.

mrsm49 profile image
mrsm49

I had a total thyroidectomy last December, my sister had half hers out few weeks before mine as an urgent case 're a suspect biopsy. Both our ops were fine and both clear of cancer. However at the moment she is having no problems with thyroid levels and doesn't need tablets while I've been struggling and still not back to normal. She was given the choice of hemi or full thyroidectomy with the consultant recommending the half removal which she reluctantly chose (as worried about having to have a second op if cancer found) Shes

mrsm49 profile image
mrsm49ā€¢ in reply tomrsm49

Sorry didn't finish. Was going to say my sister is happy with choice now as would b struggling to cope with 3kids and a house move if she felt like me. I've only been up few hours doing light housework and now back in bed as shattered.

Anyway so I suppose you should take your circumstances into account when making your decision.

I wish you well, sure you will b fine it's a very common op these days so they know what they're doing.

Centralparklady profile image
Centralparkladyā€¢ in reply tomrsm49

Thanks Mrsm for your reply, everyone being very helpful with there comments etc. will be seing my doctor next week for a chat.

Clutter profile image
Clutter

RFU, there's no need for total thyroidectomy for micropapillary thyroid cancer. If a surgeon agreed to prescribe NDT that wouldn't be binding on the endocrinologist or GP who took over the patient's care.

SilverAvocado profile image
SilverAvocado

I guess I'm also a warning story, as I had mine out almost exactly 2 ago, and am still off work and struggling.

Unfortunately I don't really know know what alternatives the are, but think Clutter is right, that you have plenty of of time.

10 to 20% chance of cancer sounds very low. I was sure mine was cancer at the the time I had it out, and I think I would feel very cheated to have lost two years of my life, thousands of pounds in income, relationships, etc, and it had turned out not to be cancer!

Another funny issue that shouldn't be important but in the the end is - if you've had cancer you do have an easier time making your case with later doctors, benefits people, work, etc. You will be legally disabled. But if you lose your thyroid, are very sick, but didn't have cancer, will you still have those entitlements? I fear the stereotype is that it's quite an easy op, with few long term consequences.

Another big question I would ask, is are you unwell today? I started to get a lot more tired in the months leading up to my op, was having to leave the gym early, getting headaches and dizziness at the end of the work day, etc.

If you don't have any symptoms, you really are free to take some time over it. If I were you I would definitely get a second opinion - not from just anyone, look at the Thyroid UK list of recommended doctors - be prepared to pay for private if necessary . And if it's possible to wait and get another FNA later to confirm, do that. As others up - thread have said, surgeons are knife happy. I've heard many stories of people with any little lump going under the knife and losing their precious thyroid forever !

You might also ask your surgeon if they are willing to to prescribe Liothyronine. It's the faster acting, active form of thyroxine, and most people with no thyroid really need need some of it in addition to the the levothyroxine they will always give out.

Sorry for length!

SilverAvocado profile image
SilverAvocadoā€¢ in reply toSilverAvocado

I was 33 and pretty fit when I went in in for my op. The op itself is quite straightforward. My fitness has definitely helped me cope with being bedbound - I'm flexible and can still feel strength in in my muscles even though I am very weak. But it definitely didn't prevent it!

Centralparklady profile image
Centralparkladyā€¢ in reply toSilverAvocado

I still go swimming twice a week, I am 59yrs old and have kept fit most of my life. I also have arthritis so swimming helps my joints.

Limbolass profile image
Limbolass

Sorry to hear this. I'm in a similar situation & have a 3 cm nodule on my right side, still waiting to find out if it's cancerous. A fellow sufferer has recommended ethanol injections (PEI) as a safer alternative to surgery & RAI. She had this done in Italy & fully recovered quite quickly. I'm looking into this now but can't find much about it in UK. It's mostly done in Italy apparently.

Centralparklady profile image
Centralparkladyā€¢ in reply toLimbolass

Thanks for your reply, hope your results are good news, shame Italy is so far away.

Heloise profile image
Heloise

Please watch the video by someone who truthfully relates that your body has certain reasons for doing what it does. It makes sense that a doctor should respect the body before destroying part of it. There is too much ignorance regarding thyroid conditions.

youtube.com/watch?v=T_Re4ja...

This man also makes a lot of sense.

youtube.com/watch?v=_nA3TuW...

tilly83 profile image
tilly83

Brenda, lots of good advice especially Clutter, please please get a Fine Needle Aspiration. I had (and still have ) multinodular thryoid and am in remission from Graves. I was told about cancer suspicion but after initial shock chose fna, so glad I did it was fine. I am now free of drugs (touching wood) and take more responsibility for my health.... surgeons will cut and go, you have to live forever with results so decide with all knowledge and trepidation.

Centralparklady profile image
Centralparkladyā€¢ in reply totilly83

Hi Tilly

I Had the fna a month ago plus a nuclear medicine scan, something did'nt look right suspicious the surgeon said.

So must get it sorted.

Thanks for your reply.

tilly83 profile image
tilly83ā€¢ in reply toCentralparklady

Hope it goes well and I know if there is anything suspicious like Clutter and others say it's a place dealt with very very successfully... x

sherriemac1 profile image
sherriemac1

Keep a Positive Attitude and if Cancer is Diagnosed and You Would Use Medical Cannabis, Look into Getting Ricky Simpson Oil, It Attacks and KILLS CANCER CELLS! ! STAY POSITIVE ALWAYS! ! GOOD LUCK AND I WILL SAY A PRAYER FOR YOU! !

Centralparklady profile image
Centralparklady

Thanks to everyone for replying to my post. I have decided to have the surgery, so God willing everything will be fine.

I really appreciate the kind words and thoughts from everybody.

prometheusa3b profile image
prometheusa3b

Hi I had a total thyroidectomy 4 years ago and I am fine I am on thyroxine, operation was fine a bit of discomfort but nothing too painful good luck

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