One patient with glioblastoma still alive nine years later
by birdie16 on Wed Oct 29, 2008 12:00 AM
I just found this on the web, it was from a hospital in Texas that does nothing but thyroid surgery:
"A recent paper out of the University of California San Francisco suggested that there have been only about 400 reported cases of documented Hurthle cell cancer of the thyroid in the last 75 years. Certainly, there have been others but this underscores the rarity of this disease."
I think the odds are on our side (your husband and myself). Good luck!
by skkye on Wed Oct 29, 2008 12:00 AM
Did they tell you if your nodule was a Hurthle cell tumor (primary made of up Hurthle cells) or just a thyroid nodule with some hurthle cells in it?
I hope so...doing a search on this forum found a few with hurthle cell carcinoma...
Good luck to you ... I'll keep posting here.
by Tavish on Wed Oct 29, 2008 12:00 AM
Wow, so much emotion! You've been given some great advice on this thread and I'll add my 2 cents' worth.
Yes it is true that thyroid cancer is one of the "best" to get. True, it is cancer, and it sucks. But it really becomes like a chronic medical condition, perhaps even like diabetes. Once we get regulated on meds, life is stable. Yes, some thyroid cancers recur and are stubborn and even others spread. Odds are in your husband's favor! Even for those that recur and or spread, it remains treatable with RAI.
I had breast cancer in 1999 (am 39 now) and had papillary carcinoma in June of this year. Let me tell ya, physically and mentally, thyroid cancer wins hands down!
Worrying won't change the outcome, so try not to. Instead, put your energy into learning, researching and taking control (sounds like you are doing that already!).
Getting an experienced surgeon is key...some complications can occur, but mostly it is a pretty easy process. My surgery was 4 months ago and my scar fades more each day. I had no complications, no problems with my vocal cords, etc. Minimal time off work.
And hang in there! If, and that is a BIG IF, it is cancer, this is very do-able!
Thanks for the kind words and support. I'm most concern about Hurthle cell carcinoma. Did they find those cells in your biopsy? I am hoping that's not what he has since it's considered aggressive and not easy to treat.
Thank you for the encouraging words. It's been very stressful ... I'm trying to eat and rest so the baby will be healthy..but find it hard to do at times.
by NewYorkCity on Wed Oct 29, 2008 12:00 AM
On 10/29/2008 skkye wrote:Hi everyone,I'm new to the board. My husband (40 years old) just had his biopsy results and I am worried sick. I'm 32 with a 3 year old and pregnant with another due in Jan.He has a solitary vascular nodule in the left lobe measuring 1.1 * 1.3 * 1.8 cm. Biopsy found "Multiple clusters of atypical Hurthle cells, cannot exclude thyroid neoplasm and papillary carcinoma cannot be excluded. I'm trying to get everything together to find him a surgeon. His endocrinologist seems to think that the worse case is papillary cancer...but I'm not sure since they found the "atypical Hurthle cells" whether it means it can be Hurthle Cell carcinoma. Anyone had any experience?We are looking into Columbia Presbyterian, Sloan Kettering and Mount Sinai hospital. Had anyone had their surgery done there, which surgeon did you use?Thanks for reading, any advice appreciated.Skkye
I'm new to the board. My husband (40 years old) just had his biopsy results and I am worried sick. I'm 32 with a 3 year old and pregnant with another due in Jan.
He has a solitary vascular nodule in the left lobe measuring 1.1 * 1.3 * 1.8 cm. Biopsy found "Multiple clusters of atypical Hurthle cells, cannot exclude thyroid neoplasm and papillary carcinoma cannot be excluded.
I'm trying to get everything together to find him a surgeon. His endocrinologist seems to think that the worse case is papillary cancer...but I'm not sure since they found the "atypical Hurthle cells" whether it means it can be Hurthle Cell carcinoma. Anyone had any experience?
We are looking into Columbia Presbyterian, Sloan Kettering and Mount Sinai hospital. Had anyone had their surgery done there, which surgeon did you use?
Thanks for reading, any advice appreciated.
I had my surgery done in Memorial Sloan Kettering this past February. The surgeon I used is Dr. Shaha - Wonderful (knows his stuff)
The ENT I use at Sloan for my treatment and check ups is Dr. Tuttle (also wonderful). I was sent to him by Dr. Shaha because I also was told mine are hurthle cell - he specializes in this particular type.
After my FNA, I was told it was papillary - not until after they remove the thyroid did they find out it was hurthle....they told me hurthle is a bit more agressive and thats when I was sent to Dr. Tuttle. When I first saw him, he told me that if anyone on the East Coast has this "type", they most likely are seeing him. He is also a Wonderful Doctor. So glad I was referred to him
OOPS........my surgery was in December - it was my treatment that was in February.
Brain Freeze...must be old age (41)...lol
No, no hurthle cells for me, plain old papillary carcinoma. I can't speak to the aggressiveness or treatment for hurthle cell....but I also know that there are a lot of false positives or suspicious FNA's that turn out to be benign in surgery.
My other advice is to research enough till you have what you need to ask the right questions and know what answers to seek. If you read too much, it is too overwhelming and can be frightening....so part of the trick is learning when to stop reading.
Keep us posted!
by skkye on Thu Oct 30, 2008 12:00 AM
Thank you for your reply. We are waiting to hear from Dr.Shah's office to see if he will take my husband as a patient. Someonealso mentioned Dr. Patel and Dr. Kraus, I think I'll ask for Dr.Shasato see if they have appointments available.
We called Dr. Tuttle for an appointment and he is not taking any new patients, even if they have a confirmed case.
Did he give you a prognosis?
I'm at a lost...
by Corduroy on Thu Oct 30, 2008 12:00 AM
Hi there, I just wanted to chime in too b/c I can hear the stress in your words and I was in a similar situation, but it was me with the cancer. I had a baby in Jan 07, went for my physical in Aug 07 and an enlarged thyroid was detected upon physical exam of my neck. Fast forward past ultrasound, FNA, left lobectomy and removal of tumour - cancer was detected. I got the diagnosis Dec 23/07 - 2 days before my baby's first christmas. Had the remaining thyroid removed in Feb 08 with a central neck dissection involving removal of several lymph nodes. Remainder of the thyroid also had several cancerous nodules - no mets to the lymphs though. Cancer was papillary type with vascular nodules, and hurtle cells were present. Had RAI in May 08 - isolation from hubby and baby for 1 week. Meds have finally been regulated and I go for my WBS in Jan 09. Endocrinologist was somewhat concerned about the presence of hurtle cells, but felt confident I would get through this no problem. My tumours/nodules were quite large - measuring greater than 3 cm. Physically, I feel fantastic and am very optimistic.
Anyways, that's my story. What your family is going through is scary and stressful and everything else. Besides having a family and being pregnant, which is all stressful in and of itself, now you have this added to your plate. I tired of hearing how thyroid cancer was the good cancer, but like everyone says, it is true. It still sucks nonetheless. Use this board and also look at www.cancer.gov. You guys will get through this and just know that something like this really makes us appreciate all we have in life. Know that you are in my thoughts and I hope for the best for you guys.
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