I'm just after some advise and looking to see if anybody else has had a similar experience to me.
I'm a 22 year old Male, about 6 weeks ago I noticed that the right hand side of my thyroid was swollen so I went to see the doctor. I had blood tests done and everything came back normal including the TSH test, so I was sent to see a consultant at the hospital.
At the first appointment he thought that it may just be some liquid and tried to remove it, upon realising that it wasn't, I was made an appointment in Medical Imaging to get an ultrasound and biopsy done.
I've just had another appointment to get the results..... the biopsy came back inconclusive, meaning they are unsure whether the lumps are cancerous or not. He then explained to me that they would like to remove the right side of my thyroid in a diagnostic procedure to see if it is cancerous or not.
I feel like surgery would only be a last resort, would it not be possible to get another sample of cells? Is there any other options before surgery? Also I am going through the nhs at the moment but I would like a second opinion and will be looking into a private consultation.
All replies will be very much appreciated.
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ac212
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It's not uncommon to have 2 or 3 inconclusive FNAs before having hemilobectomy. Several members have had 3 and then agreed to hemilobectomy but when the lobe was examined in histopathology the nodules were benign.
Ask your endo whether the FNA can be repeated in 3 months. If he is reluctant ask for a second opinion. Most thyCa is very slow growing so waiting a few months is unlikely to be detrimental if the nodule is malignant.
My FNA was inconclusive but hemilobectomy was scheduled to relieve pressure fromthe nodule on the windpipe. Histopathlogy was malignant but the tumour hadn't grown much during the 6 month wait for surgery.
Hi went through the same soul searching last year and my sister did earlier this year. After loads of research it seems that the only way to find out if cancerous or not is to do a major operation as a diagnostic procedure however counter intuitive that seems. The butterfly trust has produced a very informative video and I recommend you find a copy if you want more information. I don't think you will necessarily get a better opinion by going private and if anything I have heard anecdotal evidence that they are even more likely to be knife happy. I echo clutters advice that if it isn't causing you a problem then waiting a few months is not likely to do any harm.
I have no experience of what you are faced with. But I would definitely recommend you get a copy of your thyroid test results as soon as possible, including reference ranges, from your GP. (You are legally entitled to a copy, and your doctor is not allowed to make a profit on printing them out. If they ask for money at all it should only be a small amount to cover the costs of printing.) Post all the results here to see if anyone has any comments to make. Start keeping a file of all your results - they will be useful in the future.
Were your thyroid antibodies tested? There are several different kinds, and under the circumstances, in your shoes, I would want them ALL tested before anyone came near me with a scalpel. I don't know if that is standard practice or not though - you may have to pay for private blood tests to get them all. If you want to consider this, ask for advice on where and how to get them done without a doctor being involved (because involving a doctor just puts the price up).
Apart from the swollen thyroid have you had any other symptoms suggesting a thyroid problem? If you actually feel well, then the test results you have now, before surgery, are a useful benchmark for what you would want to achieve post surgery with medication, if that became necessary.
By the way, a full set of thyroid function tests comprises (apart from antibodies referred to above) Free T4, Free T3, TSH, and if you are paying privately, also Reverse T3 can be done.
Having the first three is absolutely essential. The reverse T3 would be a nice added bonus.
The reason for suggesting all this stuff is ...
Imagine your current results show TSH about 10% of the way through the reference range, FT4 at 70% of the way through the reference range and FT3 at 60%.
Now, imagine after surgery that all your numbers have altered - TSH now 80% of the way through the range, FT4 at 40% and FT3 at 25%. All the numbers may be in range, but surgery has altered them substantially. You can use your pre-surgery numbers to point out to your doctor what numbers you had when you felt well and tell him/her that you want to get as close to your old numbers as possible. I don't know if it will work, but it is worth having some ammunition!
Absolutely get a second if not third opinion. Most thyroid nodules are benign. Have biopsy evaluated by at least two different labs. IF removal is recommended ONLY do as last option and ONLY remove half. All Best.
It's a massive decision. I had the same and consultant wanted to book me in and remove half of thryoid. Thankfully I asked for fine needle aspiration (FNA) and had this done.... I'd had terrible sore throat resulting in thryoiditis and eventually Graves but I've dealt with it holistically and now not on any drugs, no surgery and ran 10k for charity......it's easy for surgeon to take out thryoid but there are drawbacks and potential long-term problems if your thyroid needs support. You said your blood results were ok, find out what the T4 T2 and TSH were plus the ranges. Never go to GP or consultant without notepad and preferably someone with you and write down what is aid then write up in computer with dates.
Just chiming in that losing half a thyroid is an enormous big deal. I've lost all of mine, my consultant consultant played it down, while was obsessed with cancer. But as Clutter says, the cancer is relatively very benign, don't get scared by the word 'cancer'.
I had half of mine removed first, and I seemed to have just as many problems as I later had with the whole thing removed. And many people have years of trouble afterwards, new trouble pop up at any time, and certainly as y start to get elderly. It's definitely not not something something to do just on a probability!
Following a severe throat infection, I had a hemithyroidectomy last year and wish now that I had persevered a little longer before agreeing. I had suddenly become very hyper, losing weight rapidly and sweating like a waterfall. Carbimazole was controlling this. I had 2 FNAs with the first being OK and the second being inconclusive. After the op, there was found to be no cancer which was heartening but I am still struggling with the after-effects - still trying to get appointments with an endo which aren't promptly postponed 'due to unforeseen circumstances', weight gain (2 1/2 stones), overwhelming tiredness and muscle weakness to name but a few. I would definitely wait a little longer and get a second opinion.
Just an update incase anybody is following this...
I went ahead with the operation as after research I realised my increased risk factors (being male, being young etc) also I had a DNA test which showed I was 3.5 times more likely to develop thyroid cancer.
After the operation it turned out that I did have thyroid cancer and I have recently had the rest of my thyroid out
Its been a bit stressful having looming over my head for so many months but I got a call from my consultant yesterday with the results from my second operation saying that I wont need any more treatment which was a relief.
I've been put on Levothyroxine 125mg, but it's too early to tell how well it's going at the moment, however for the last week or so I've been suffering from insomnia which again isn't great haha!
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