Surveillance may be suitable for 85% of patients with papillary cancer but what of the 15% with follicular and aggressive follicular variants like Hurthle cell carcinomas?
My FNA and core biopsies were inconclusive, ie they couldn't determine adenoma or carcinoma. Surgery was required to relieve compression on my windpipe and it wasn't until the lobe was biopsied that stage II HCC was confirmed.
Improved ultrasound may detect tiny nodules but until FNA can determine conclusively a) the nodule is a carcinoma; and b) whether it is papillary, follicular or a variant, I wouldn't be inclined to watch and wait.
I think the 15% could end up with the cancer spreading to their lymph nodes, bloodstream & adjoining organs requiring more intensive surgery and a poor outlook.
Improving FNA & core pathology should be prioritised before advocating living with a cancer which may be of a rapid growing and aggressive type IMO.
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Clutter
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I don't think thyroid cancer is over diagnosed or over treated but I do think improvements need to made in diagnosis.
I was amazed that high definition ultrasounds were not used on the thyroid and nodules. 4D ultrasounds are used in pregnancy that give clear images but not on the thyroid.
FNAs have room for error because the whole nodule is not sampled.
If you have a benign result on a nodule you are not off the hook you are checked once a year and that involves going through the whole process again, an FNA every year. It's as if a sentence is hanging over you. I met people who had been attending biopsy clinics for 15 years! Think of all that stress!
The whole situation is unsatisfactory.
America seem to be making some headway with molecular testing the samples. But it's in the early stages. Be a few years before it hits these shores. They are going down the higher definition ultrasound route also.
My Endo told me that there is no more money to be made from the thyroid. The pharmaceutical companies have got thyroxine down to the lowest price they can. They are not putting money into research because there is no financial gain to them. It's up to the Trusts to try to raise funds themselves to do their own research.
As you say, its extremely unsatisfactory. I didn't realise that benign FNAs meant annual follow ups. I don't really see that as any more stressful than follow up thyroglobulen tests to check for recurrence of cancer although the procedure is certainly much more uncomfortable.
Depressing what your endo has said, but not surprising. The same seems to apply to research into antibiotics.
You must feel so grateful to the Endo that put you forward for the surgery.
I am not at the thyroglobulin stage yet but I could be after tomorrow. I get the results of the biopsy carried out on partial thyroidectomy.
Another flaw in the diagnosis of follicular thyroid cancer in the UK is if the result is malignant, I have to have repeat surgery on the rest of the thyroid. In other countries when you are on the operating table, they remove half the thyroid, biopsy there and then and if it's malignant remove the rest of the thyroid. One operation, job done. Seems such a long winded way of doing things.
I've barely a civil word for the endos I see, let alone gratitude
My GP, sadly now left the practice, is the person I'm grateful to. I presented with a lump, explained my symptoms which I now know to be spiralling hyper/hypo Hashi's & informed her I had Graves. Being a knowledgable physician she agreed and ran a panel of tests. When they came back normal she re-ran them & requested TPoAb. Antibodies were elevated but TSH, FT4 & FT3 normal. Lab refused to run TFT 3rd time. She also arranged ultrasound scans and various ECGs and arranged referral to the consultant surgeon in the Maxillo Facial Clinic.
Surgeon was excellent, despite lacking an indepth knowledge of Hashi's symptoms, and referred me to the two consultant endos who take it in turn to ignore my symptoms at Joint Thyroid Cancer Clinics, telling me that T4 can't possibly be the reason I've developed fibro, inexplicable facial pain and COPD & a host of debilitating ailments post surgery.
I had completion surgery 3 months after the TT and that lobe was cancer free. If I hadn't had Hashi's I would regret the 2nd surgery but Hashi's would have destroyed the lobe in time. I agree with you that biopsy during PT should be adopted here. It has to be less risky for the patient and cheaper for the NHS.
I'm keeping my fingers crossed that your result is benign. Will you post an update please?
If you want to contact me about your result just PM me. x
Hi there Clutter and Chickens12, just picked up on your comments. I would absolutely agree that it is not overdiagnosed. It is by far the fastest growing cancer. As for the treatment and management / surveillance at least there are guidelines that have been set by the RCP for Thyroid cancer but I would say that they are far from satisfactory in fact I find it quite appalling as that experts know so little in this field. Fortunately I am seen 4 times a year, twice by an Endo and twice by nuclear med at my insistence but this has not always been the case. My Nuc Med consultant that I have been under for 24 years never took my FT3 can you believe it? She feels it is clinically irrelevant yet T3 is the most crucial in suppressing thyroglobulin! Diagnostic tools are limited again, we are last on the list and low priority. I feel thyroid cancer is trivialized and we are always told that it is one of the best cancers to get!!!! The cancer may have "been cured" so I have been told but then you are left to endure the complications of being kept medically 'hyper' (or the case may not be), all the usual lack of a thyroid complications and the fear of a recurrence. Good luck to both of you and keep me posted xx
I've been on T4 only post RAI & TSH has always been suppressed, undetectable for the first few months while I was overmedicated. Endos measure TSH, FT4 & FT3. I'm not quite sure why they bother when FT3 was below range & FT4 low in range at my last consult in August & I was instructed to remain on 100mcg.
I was very impressed with the care I had from my GP at the time, the surgeon she referred me to, the oncologist and nuclear medicine physician. The endos suck though
Great about chicken12. Endos are a huge problem, their thought processes are set in stone, rigid, inflexible and arrogant with it. Low FT4 and FT3? TSH test alone is so unreliable? Be very watchful that is what they did with me. They gradually reduced my T4 from 375- 125 based on FT4 and TSH alone and I ended up in a huge mess..not with a recurrence but with adrenal issues and absolutely hypo....take care
Its been the opposite with me. Oncologist started me on 200mcg & i couldnt cope on it. It was reduced in 25mcg increments and im now on 100mcg. I whined about reducing at every consult.
I was so ill & convinced it was T4 that i stopped taking it for a few weeks. The illnesses that accrued since starting T4 diminished and quickly disappeared with the exception of some facial pain. I was amazed how well i could feel.
In Aug i asked if vitD, ferritin, B12 & folate were ok & was told FBC was fine, so no need to test. In Nov GP tested and vitD was <10, folate deficient, B12 low in range & ferritin above range. I'm also taking B1, B2, B6 & vitC & about to start magnesium & zinc. Hopefully this will cheer the adrenals up
I emailed two consultant endos in November telling them i'd stopped T4 and felt good and asked for advice on alternative meds. Still awaiting reply.
GP cant prescribe T3 so i resumed T4. In a matter of days the diarrhoea, fibro & hideous palpitations and tremors were back. Ive been adding T3 (from internet) and it seems to calm things a bit. i may trial NDT next month. It has to be better than generic T4.
Initially I was on such a huge suppressive dose as I had a TT but that was many years ago and I got on with it as I had to -there was no internet, no support, no info and I foolishly listened to the doctors because I was led to believe that they were the experts. Sounds as if you are just not getting on with T4/T4 resistant. I am now on NDT but that has not been without issues. I still get horrendous palpitations but I think it is anxiety linked as my pulse is now quite steady. Make sure that your adrenals and minerals ferritin, folate, B12, magnesium, zinc, Vit B's are good before starting T3/NDT.
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Thyroid cancer
Me and my daughter 
Inconclusive FNA and next steps?
