Hi everyone,
Ive been quietly stalking this group for a couple of weeks now and found some of the information really useful. I feel a bit premature posting on here but I feel like I’m going quietly mad in my own head! My story started 12 weeks ago when my gp found some enlarged lymph nodes in my neck and wanted to get them checked out, during my ultra sound a nodule was found on my thyroid but I was reassured that it was probably nothing and that there would probably be no need for further tests at this time! I was happy as Larry and almost skipped out of the room after weeks of worry... but next day a call from my go referring me to ent?? A couple of weeks later I’m at ent to be told after an examination that all looked fine but it had been suggested that I see the thyroid specialist but I shouldn’t worry they were just being over cautious and that there would probably be no further action. So a few weeks later I go off to my appt on my own thinking I had nothing to worry about.... only to be told by the thyroid specialist that my nodule looked “abnormal” on the scan and it needed a biopsy! Total shock! My head went into a spin and I couldn’t really take in much after that! During the biopsy the man doing it said it was “borderline”? What do these words actually mean? My results have now come back inconclusive and I’m looking at having surgery. Appt booked to see my consultant next week. I’m so scared! I keep crying and can’t stop thinking about it! Forgot to mention my thyroid function came back that it’s slightly overactive. Sorry for the essay but I hustled needed to get all this off my chest to people who may have an idea of how I’m feeling
Emma x
Hey Emma,
Sorry to hear that things haven't gone as you might have hoped so far.
The thing is, ultrasounds are awful things to try and look at and read. I don't know how many ultrasound pics of babies you might have seen, where all it looks like is snow, with maybe a vague shape.
That's why there's the FNA after the ultrasound. Because sometimes the ultrasound pics could indicate that it's dodgy looking, but once they see the cells under the microscope then they're all fine.
Unfortunately they couldn't tell one way or another from the sample they've taken from you. There are sometimes two options offered to people in cases like this. Wait a few months and do the FNA again to see if they get a more conclusive sample, or do a diagnostic hemi so they can get the whole thing under the microscope. So that might be what your consultant will discuss with you next week.
But I can reassure you, there's nothing to be scared about at this point. Over 90% of thyroid nodules are benign, and those that aren't are usually very treatable with an over 99% success rate.
We're here for you, so if you've any questions or worries then just shout and we'll help where we can.
Lass
Xx
I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.
Thank you so much for taking the time to reply Lass! Fingers crossed I’m worrying for nothing and all comes back clear!
Out of curiosity do you have any idea how long the average wait would be for a diagnostic hemi? Also is it just a day surgery?
Thanks again!
Emma xxx
Hey Emma,
I'm afraid there really is no average on that one. It can be anything from a month to a year from what I've seen here. It's not classed as urgent, because even if it is thyroid cancer then it's generally super slow growing. So there's not usually a risk in a bit of a wait.
It's usually an overnight stay, but some folks have been booted out same day. They tried to kick me out same day after my TT, but I refused to go because I didn't have a bed at home and I'd been told I needed my calcium levels monitored just in case the parathyroids had an issue.
But if you need a diagnostic hemi, then plan for an overnight stay then out between 9am and 2pm depending on rounds.
Lass
Xx
I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.
Thinking of you and your appointment with the consultant this week! Do make sure and ask about an ETA on the op date.
Hope it all goes well!
Lass
Xx
I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.
Hi. I'm in a similar situation. I had an ultrasound which was given a score of U5 (malignant), and was therefore followed up with an FNA last week. However I got the results of that today which were thy2 (benign). The consultant has therefore given me the option of another scan and FNA in a couple of months or I can opt for a hemithyroidectomy anyway and they'll analyse the lump once it's removed to see whether it is cancerous or not and decide any further action needed. Trying to weigh up all the pros and cons but reaching a decision is not easy ! Do I wait for a hopefully more conclusive diagnosis or do I decide to have the operation anyway ? What do others think ? Thanks, Micra
Hi Micra
The FNA is more accurate than the US. The US is generally only used to pre-qualify you for getting the FNA so if that test shows Thy2, I'd be reluctant to rush to surgery and would probably go down the wait and watch route and repeat the test in a few months.
When cancer is strongly suspected or confidently indicated, I'm all for whip it out. But in your case, it would be a shame to waste half a good thyroid if there's a chance you can keep the lot and go for regular monitoring.
The only exception would be if your lump is big enough to be ugly or to be pressing on your wind pipe. In both case I'd say regardless of cancer it's better out than in.
I was a Thy4 so had a hemi but my doc said it really wouldn't have mattered what he Thy# was as the darned thing was so big that I looked like I had a boiled egg sticking out of my throat and I was having breathing problems.
Best wishes
Barbara
“Scars are tattoos with better stories.” – Anonymous
Hey Micra,
Just wanted to add a bit more about the ultrasound rating system.
Ultrasound alone can’t usually diagnose cancer. It can detect abnormalities, and give doctors an idea of level of suspicion.
Doctors use a grading system for ultrasound. It ranges from U1 to U5, where U1 is completely normal through to U5 which is very suspicious of being cancer.
U1 is a normal thyroid
U2 has features that are benign (non-cancerous), e.g. possibly a cyst
U3 is indeterminate
U4 has some features that are suspicious of cancer
U5 has more cancerous features, and nodules that score U5 turn out to be cancerous more often than not.
All U3 – U5 nodules would then generally be biopsied
Once they have a biopsy result they use another grading system called THY to classify how the cells look under a microscope. This is also numbered 1 to 5
Thy1 means they didn’t get enough cells to make a diagnosis.
THY2 is a benign result.
THY3 is an intermate result, where between 9 and 43% turn out to be cancer.
THY4 is suspicious where 68% to 70% turn out to be cancer.
THY5 is diagnostic of cancer in 99.9% of cases.
So as Barbaral says, the U score just got you the FNA, and the FNA says it's conclusively, all benign. If they weren't sure they'd have rated you a T3. So I wouldn't be rushing to surgery either.
Lass
Xx
I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.
Hi Micra,
I would take a wait and watch approach in your case and not rush towards surgery. As 90% thyroid nodules are benign, looks like you fall in this category.
So unless its large >1-2cm and causing problems for swallowing or breathing, advise to wait.
Thanks for all your helpful advice, it's reassuring I'm thinking that same way. I think I'll wait til February and see what the second biopsy shows - if it's still benign then I'll see what the consultant says. He's said I can let him know if/when I want the operation anytime prior to February so I'm not closing the door completely. Thanks and best wishes, Micra
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007