Does Anyone Out There Have Tall Cell Papillary?

On 4/30/2008 YaYaTara wrote:

 

On 4/30/2008 Nurserobin wrote:

Yes, I also have tall cell papillary.  It is very hard to "cure".  From what I understand, it does not respond well to RAI and surgery seems to be the treatment of choice.  I have had 2 surgeries in the past 8 months.  What have you been told by your physicians?

Thanks for responding.   I was beginning to wonder if I was the only person who had it!  I heard there was only one specialist in the country who deal with it.  I'll need to find out where he/she is located.  Doctors just told me it was a more aggressive form on papillary and that it wasn't that common---my doctor has had only one other patient with it.  What have they told you about it?   What's our prognosis?   Are you concerned?  My tumor was over 2--maybe 3 cm.

 

What a huge relief to find this message board. I was also beginning to feel there was nobody with whom to talk to about this. Hi, I'm Victoria, 54 years old, a New Yorker. After surviving stage 3A uterine cancer and stage 1C fallopian tube cancer, I was diagnosed with tall cell cancer yesterday, an "aggressive variant of papillary thyroid cancer". Had my thyroid and surrounding lymph glands removed April 22 2008 at New York Presbyterian Hospital.The superbly skilled and friendly surgeon, Dr. David Kutler, said the 1.2 tumor, which was wrapped around my laryngeal nerve was "sticky" and I suppose that was why the surgery took 8 hours, rather than the 3 hours that were expected and that with the endocrinologist I'd be taking a larger dose of Radioactive Iodine than was previously expected and then be closely monitored with ultrasound and nuclear scans for metastases, which might occur in the lymph glands, lungs, bone or breasts. Possible external beam radiation. I was told by Dr. Kutler that chemotherapy for this cancer is only given for palliative reasons. Does that mean this cancer can only be treated with radiation or surgery?

I'm worried there seem to be  no doctors on the web who are familiar with this cancer. All the info out there says bluntly and negatively that "the prognosis is poor". I feel like fighting that. How are the metastases treated? Any clinical trials? I called The New York Thyroid Center

http://www.cumc.columbia.edu/dept/thyroid/

and see if they have any answers. 

Left a message with
William B. Inabnet, MD, assistant, Leslie.

All I know now is that "he doesn't take any insurance", yikes, but has "a colleague who does take insurance".

Will get back to the other members here immediately if I find any information about a specialist or anyone knowledgeable and would so appreciate hearing any info from others.

I suspect I had hypothyroid issues for many years as now, taking levothyroxine for 1 week now post op I feel so energized and in such good spirits. 

Am trying to find *any* info about this tall cell variant:

http://www.thyroid-cancer.net/resources/answers.php3 

http://www.ncbi.nlm.nih.gov/pubmed/11523623

http://arpa.allenpress.com/arpaonline/?request=get-document& (2001)125%3C0541:CTCCAH%3E2.0.CO%3B2 

http://www.joplink.net/prev/200607/05.html

(just wrote the author of that article, Ali A Siddiqui, to see if he has any information).

There seems to be a lot to learn, like about thyroglobulin levels in relation to metastases of this cancer.

Grateful for the company in this message forum. Best wishes, Victoria