Does Anyone Out There Have Tall Cell Papillary?

I am fairly new to this message board.  I have never heard anyone mention having Tall Cell (I do).   Does it affect your treatment program or prognosis?  I don't think it's very common and it scares me.  I know this sounds dumb...but I'm afraid to investigate it on the internet.  This is my 4th experience with cancer (first-time for thyroid).  I am on RID--waiting for Thyrogen/RAI/WBS.   Thank you.   Good luck to everyone out there.  

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?

 

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.

 

 

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. 

New York, NY   10032







Phone: 212-305-0444


Fax: 212-305-0445

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

 

 

 

 

 

Hi again,

My friend, Nan, has been so kind as to help me research clinical trials related to tall cell papillary thyroid cancer. I enclose her results also for your benefit, in case the information is useful to you. 

Clincal trials, articles and/or innovation in treatment




http://www.cancer.gov/search/ResultsClinicalTrials.aspx?prot



http://www.research.uky.edu/odyssey/spring03/thyroid.html



http://mednews.wustl.edu/news/page/normal/5527.html



http://www.google.com/search?hl=en&q=tall+cell+thyroid+cancer+clinical+trials



http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2006-DK



http://clinicaltrials.gov/ct2/show/NCT00251316?recr=Open&cond=%22Thyroid+Diseases%22&rank=18



http://edrv.endojournals.org/cgi/content/abstract/28/7/742



http://www.nature.com/bjc/journal/v96/n1/full/6603520a.html

 

Best wishes,

Victoria 

From what I am reading, RAI doesn't treat tall cell very well if at all.  Surgery seems to be the treatment of choice.  So annual nuclear scans with thyroglobulin levels.  I wish there was something more definitive. 

 Sounds like you have been thorough the ringer.  Keep positive and keep fighting.  I am going to see Dr. Fagin at Sloan Kettering later this month.  Supposedly he is the papillary thryoid cancer "guru".  Good Luck!

 

On 5/1/2008 Nurserobin wrote:

From what I am reading, RAI doesn't treat tall cell very well if at all.  Surgery seems to be the treatment of choice.  So annual nuclear scans with thyroglobulin levels.  I wish there was something more definitive. 

 Sounds like you have been thorough the ringer.  Keep positive and keep fighting.  I am going to see Dr. Fagin at Sloan Kettering later this month.  Supposedly he is the papillary thryoid cancer "guru".  Good Luck!

Say hey dear Nurserobin, thanks for your prompt, informative and friendly reply.It's so appreciated. :) Just came back from seeing the endocrinologist Dr. Kutler referred me to, Dr. Jason Baker and was disheartened he rushed me through the visit, wasn't willing to discuss tall cell as a variant of papillary and all he basically said was that if the Radioactive Iodine treatment is "a failure" in 6 months to seek out other treatments.

Thanks for the tip about Dr. James Fagin, here's his info for others

http://www.mskcc.org/mskcc/html/77942.cfm

 And very good luck to you. :)

 

 

 

On 5/1/2008 nickyskye wrote:

 

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. 

NewYork-Presbyterian Hospital/Columbia

Irving Pavilion Room 612

161 Fort Washington Avenue

New York, NY   10032







Phone: 212-305-0444


Fax: 212-305-0445

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

 

Victoria~I am the original poster of this search for someone who has Tall Cell.  Basically, I have heard little about this even though I was diagnosed a year ago..  I wonder what our cure rate is?  I'm supposed to have my Thyrogen on May 12 with the iodine and the scan to follow.  I'm very nervous this time to find out my scan results.  My lab showed my levels off.  Most of the time I remain upbeat, but lately I've been concerned about it.  I'm so glad that others are out there willing to share their stories.  I hope people continue to post about this rare type of cell to help give us peace of mind.  Thank you, Tara 

 

 

 

 

Tara wrote: "Victoria~I am the original poster of this search for someone who has
Tall Cell.  Basically, I have heard little about this even though I was
diagnosed a year ago..  I wonder what our cure rate is?  I'm supposed
to have my Thyrogen on May 12 with the iodine and the scan to follow. 
I'm very nervous this time to find out my scan results.  My lab showed
my levels off.  Most of the time I remain upbeat, but lately I've been
concerned about it.  I'm so glad that others are out there willing to
share their stories.  I hope people continue to post about this rare
type of cell to help give us peace of mind.  Thank you, Tara"

 

Dear Tara,

Good morning,

It's profoundly comforting to hear from others diagnosed with tall cell, not to feel so alone, isolated and in the dark about the diagnosis.And it's so great you and Nurserobin are responding to emails so promptly. Thank you. So far I haven't seen any cure rate for this cancer. Like with all cancer diagnoses -and really, with life itself- it's a combination of looking death squarely in the face, accepting what is inevitable for all of us human beings, our mortality, impermanence, and yet also fighting for our chance to live, to thrive and be well. I send you my hugs, prayers and good thoughts to help you get through this upcoming scan. love, Victoria

I read all your stories and would like to join the club.  I also was diagnosed with "tall cell" having my TT the end of August2007, RAI of 125 and a second left neck node dissection in February 2008 as the original ultrasound revealed a very small positive lymph node that did not respond to RAI.  Actually, it turned out to be 3 of 28 positive nodes.  My endo who claims to have treated patient's with tall cell feels that it is still a papillary cancer so therefore it should be treated like papillary.  I'm in constant battle with him after seeing that every piece of info on the internet paints a much gloomer type of scenerio.  My concern is that he won't treat it as aggressively as I feel is necessary.  I wish I could take his optimism and run with it but I keep thinking if he is wrong, then what, a sorry won't do it so I insure he stays on top of it or threaten and have gone elsewhere.  For some reason it seems he doesn't want to lose me as a patient.  I had been seeing him for 3 years prior for an unrelated problem, and he was the one who found the nodule in my neck which was catagorized as stage 3 due to my age, lymph node involvement and the fact it did break through the thyroid bed.  Some one mentioned that this was their 4 diagnosis of cancer.  That is interesting, this was my 3rd diagnosis, having breast cancer in 2003.  I just wanted to also mention as I indicated above, I had a known positive lymph node and it did not light up so this is concerning as it can leave us with a false sense that everything is clean.  The only way to monitor further disease with a resistant type such as tall cell, is by checking blood levels and ultrasound.  Although, the ultrasound did not pick up the second & third node which were very small.  Even though it is more aggressive, I understand it still follows the same mode of spread as ordinary papillary cancer.  First of course, the thyroid and then the lymph nodes in the neck where it is still treatable.  So apparently even though it grows more quickly if confined to the thyroid and neck nodes it can still be treated.  I've become my own advocate and make sure my doctors view me as a person and not just another patient and feel pretty confident with the several doctors on board that I just have to follow the regimen of blood tests, ultrasounds and RAI and appointments and otherwise I'm living my life to the fullest.  My husband and I just returned from a trip to the west coast (we live on the east coast) and a cruise.