My sister had 3/4s of hers removed and it was ruled benign. Anyone else have experience with hurthle cells? I’ve heard HCC is a more aggressive cancer than papillary or follicular. To clarify everything has been classified as atypical thus far.
hurthle cells are normal; but hurthle cell carcinoma is not so good. Lanell is the expert on that one. I've tagged her and allow her to take over so I don't misinform.
Thanks! They found hurthle cells but “hurthle cell neoplasm could not be excluded”
When Lanell chimes in, she'll help you
Well... here's my story. I had many tests before my first surgery. My biopsy came back inconclusive so we decided to do a partial. During surgery they performed a frozen section. They basically take cells while your under and look them under a microscope. It came back clean. Doc felt satisfied and closed me up. 3 days later I got the pathology report and I indeed had hurthle cell carcinoma. I went back in 3 weeks later for my second surgery... hurthle cell carcinoma is typically a hider and will not shoe up until path reports. Hurthle cells are actually rather common, will show up and are most likely benign. So until you have that surgery you will not know for sure if you are dealing with hurthle cells or it is indeed hurthle cell carcinoma.
I was diagnosed with papillary carcinoma with hurtle cell carcinoma that spread to lymph nodes. I'm 4 years out and doing ok.
That’s great you are doing well!
I had the full Thyroidectomy and neck dissection and radiation
Hermine what is neck dissection? Do u mean radioactive iodine?
She means another surgery. This is done to remove infected lymph nodes as they don't always react to rai
I was also diagnosed with Hurthle cell. I had 3 biopsies, all came back normal. I had what I thought was a cyst removed and even the frozen section didn't pick up anything. I wasn't till the final pathology report came back that the right side of my thyroid was Hurthle cell carcinoma. I went on to have RAI eventhough RAI is sometimes not effective for this type of thyroid cancer. That was in 2003. I also wound up having a 2nd surgery to remove the left side of my thyroid. The docs have had a hard time getting my TSH to a supressed level. All this started in 2003.
Wow that’s what scares me, is it can be so sneaky like that. 3 benign biopsies only to discover it was in fact cancer
My ENT doc said it was the first time in all his years of practice that this happened. He personally took my pathology slides down to the University of Pennsylvania for a 2nd opinion.
I know. I was blown away when they told me I had cancer.
Kimiko why is your tsh suppression still a struggle
Yes. Currently talking 450mcgs of levothyroxine. I had blood work 2 months ago and my T-SHIRT was 7 up from 3 6 months before.
I meant TSH.
My story is very similar. Almost identical
Lanell to Kimiko?
Yes. I also responded where I was tagged.
Lanell got it thanks!
My FNA found Hurthle Cells. Had a partial and it came back benign, so glad they didn’t remove the whole thing. My hormone levels are still good so no meds
That’s what I’m hoping for if I get a partial and it’s benign
Barbara es especially if you still have a functioning thyroid. Hope you get the same good news
Mathilde mine is good now, my tsh is the lower end of normal I think in part BC of the nodules. It has decreased over the last year.
I had non diagnostic biopsy...chose to have full total thyroidectomy and glad I did because it was cancer.
Hurthle cells are not always cancer.it s present is in your thyroid and usually benign.
But unfortunately you can’t find out if it’s benign or carcinoma without surgery and pathology.
I am 4.5 years out with hurthle cell carcinoma no RAI no reoccurrence and doing good..try not to freak out.
Good luck and keep us posted
Yes it’s so frustrating isn’t it? My ENT and Endo said in 10 years things will be different and more progressed as far as ability to discern
I had a highly suspicious but inconclusive biopsy. Had a PT 3 weeks ago and it was a Hurthle cell carcinoma. All surrounding tissue healthy so no further treatment just monitor closely. Get the PT and just go from there, it might be fine it might not. Best to be safe then sorry.
I really understand your hesitation as I was the same but if I waited and watched it may have spread and I would have had a much bigger mess to get cleaned up.
If you are fit and healthy and have a good surgeon chances are you won’t require meds for life like when having a total thyroidectomy. Hemi is much more desirable then total. All the best
Thank you! Yes I am very active and take really good care of myself and I agree the thought of chasing a bigger mess to clean with 2 young kids and being so young myself is what makes me think I need to move forward with surgery. Thanks for your input! How do they monitor your remaining tissue going forward?
Barbara my surgeon will get me to do blood tests and ultrasound the remaining half of thyroid every 3 months. I will be under her care and surveillance for the next 10 years.
Hi Pandora how big was tumor ?
Allie it was 11mm right in the very centre of the Right thyroid wing. It was found by chance, I feel very lucky
Pandora I am so happy for you,did it broke it’s capsule and any blood invasion?
Mine is 6 mm,only broke its own capsule,no blood invasion.that was 4.5 years ago
Allie it wasn’t what they class as encapsulated but surgeon seemed to think it was only within the nodule. I don’t know about blood invasion but will ask that question at my next appointment
Oh my. Mine was 3.4 cm upon detection in October and 4.4 cm upon removal in December.
Lanell wow that’s big! And grew so quickly in 2 months. Did you have total thyroidectomy or PT?
December 1/2.. then path confirmed hurthle cell carcinoma so second surgery January. Treatment twice. I just had a clean scan this past may
The quick growth was insane.
Lanell so glad your recent scan was clean so crazy huh all this cancer business. X
It's been quite the ride! That's for sure
I had the same scenario and after 2 years and countless repeated biopsies, I had the right lobe removed, which was benign. I feel great, do not require meds and am so happy to not have the need to do biopsy after biopsy any longer.
That’s great it was benign and that you don’t need meds, I’m hoping for this same scenario!
I was diagnosed with hurtle cell papillary follicular & follicular variant. Hurtle cell is rare but I am
Seeing more and more ppl in this forum being diagnosed with HCC. I had total thyroidectomy and did 150 RAI in 2015. I have had 3 WBS and now do ultrasounds every 6 months. My endo says I am in remission or NED
It does seem to be coming more common
Thanks Anette, I’m glad it’s in remission....does that mean it’s cured? WhT does WBS mean?
Whole body scans
Barbara whole Body Scan. I am considered no evidence of disease. I have 2 spots that show up on my ultrasound & they are being watched closely. My blood work is great or was 3 months ago. I do blood work about every 3 months & ultrasounds every 6 months.
Anette that’s so great! The spots are they where your thyroid was?
Well the neck left side. I had a left neck dissection as well