CancerCompass message board discussion started by YaYaTara on 5/28/2008 http://www.cancercompass.com/message-board/message/all,24467,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Does anyone happen to know who the leading specialist is in the USA dealing specifically with Tall Cell Papillary thyroid cancer?  I have received good advice from some participants on this board---thank you---but no one seems to know which hospital or which state in which I can find this person.  Does anyone have any more advice?  There are about 5 of us out there with this particular cell who have shared information here.  Maybe a doctor or someone with information about this could help us?  Thank you and prayers for everyone going through cancer(s).  Tara YaYaTara Wed, 28 May 2008 00:00:00 GMT On 5/29/2008 Leemg wrote:I'vebeen told it has only been the last several years that they havedesignated a sub type group of papillary cancers based on the fact thecells may look different and behave differently.  Tall cell is just onesub type and it is named that because the cells are actually tallerthan normal papillary cells.  They are just learning and collectingdata on how it reacts.  My endo claims it is still a papillary thyroidcancer which is the most common and treatable and he claims they treatit the same but I have discussed this with several other doctors whotreat thyroid cancer plus have done research on line and all indicationis that it tends to be more aggressive in nature and is further alongwhen first diagnosed which was the case with me, I'm stage 3.  It isnot unusual for papillary thyroid cancer to metastisize to the neck,actually it is very common.  The problem again with tall cell, it actsmore agressively than its slower growing cousin, the common variety. They have found, and again in my case, that it may or may not respondto RAI and may not show up in the scans, again I am a case where it hasnot. It is important to have blood tests to monitor your levels. Again, I was told that the levels don't have to be as high to indicatea problem brewing.  Also, routine ultrasounds of the neck should bedone as thyroid cancer first spreads to the neck before moving to otherparts such as the lungs and bones.  That is why I did not feelcomfortable knowing I had a positive lymph node in my neck and stayedon top of it.  Even the ultrasound did not pick up the additional twolymph nodes found on pathology.  And I read that it is not unusual tofind more lymph involvement when they actually remove them and dopathology.  Since you present with questionable swelling, I believe, inthe neck region I would push to have at least one biopsied to insurethat they are not cancerous in which case I would push to have a neckdissection.  Why allow it to do whatever if you can address it now iswhat I say.  I had breast cancer 4 years ago and I don't need to messwith positive lymph nodes.  Yes, sometimes you have to be your ownadvocate.  My endo is a nice guy and kept telling me I would be okayand then he tells me about a 40 some year old male whole has spread andis not doing well etc.  I don't need any doctor telling me Oh, I'msorry I didn't think it would do that after the fact.  In situationssuch as this I always seek a second opinion and do as much research aspossible.  When you have your appointment then you can address thosepoints, point by point.  One doctor told me he appreciated that I wasso well informed.  I believe they take you more seriously too.  Today,with HMO's and doctors having to move patients through to exist, it iseasy to become just another patient.  My doctors know me as a person. Good luck to you!  (I'm from NJ)You havebeen very helpful with this information.  I don't see my doctor for 5months, so I might see my oncologist in-between for his opinion..  Iwonder if a PET scan would pick up anything missed by our WBS?  I don'tknow what kind of a scan we have in a WBS--do you?  I also had anothercancer years ago, so I don't like to put any checkups off.  Do youhappen to know what our TSH and thyroglobulin levels should be?  Theytold me today that mine tested positive at 1 and that my TSH was 46. I'm not sure what any of this means with tall cell.  I have family backeast (NY + NJ) and have considered Sloan-Kettering for a secondopinion.  Thank, Tara YaYaTara Thu, 29 May 2008 00:00:00 GMT I am scheduled for a second opinion from an oncologist on June 11.  Iwill definitely let you know what he advises.  I'll go to MD Anderson,Sloan-Kettering or wherever I have to go if that's his recommendation. Tall cell variant sounds very aggressive and tricky.  I want to winthis battle! YaYaTara Thu, 29 May 2008 00:00:00 GMT Hi! I am going into RAI starting tomorrow 06/02/08. (My sons 5th birthday) couldn't have changed the date Diagnosed In April, full thyroidectomy late April and now RAI. I do have the tall cell variant as well. He seemed too want to act on treatment very quicky, but due to office and hospital mishaps I couldnt get in until tomorrow. I don't understand everything about it only that my Endo says I should live as long as anyone elso with papillary cancer going through the same treatment. My tumor was 18.5 mm on the left and 6.5 on the right.If you you know of anyone with any kind of thyroid disfuction they should always be refurered to an Endo. For me this came up only because my sister questioned me one day about why my primary care handled this and not a specialist. (I have had Hypothyroid for 8 years)  I had no other odd symtoms than normal. I will keep you posted. I will keep you in my prayers! Nicole C. Sun, 01 Jun 2008 00:00:00 GMT  On 6/1/2008 Nicole C. wrote:Hi! I am going into RAI starting tomorrow 06/02/08. (My sons 5th birthday) couldn't have changed the date Diagnosed In April, full thyroidectomy late April and now RAI. I do have the tall cell variant as well. He seemed too want to act on treatment very quicky, but due to office and hospital mishaps I couldnt get in until tomorrow. I don't understand everything about it only that my Endo says I should live as long as anyone elso with papillary cancer going through the same treatment. My tumor was 18.5 mm on the left and 6.5 on the right.If you you know of anyone with any kind of thyroid disfuction they should always be refurered to an Endo. For me this came up only because my sister questioned me one day about why my primary care handled this and not a specialist. (I have had Hypothyroid for 8 years)  I had no other odd symtoms than normal. I will keep you posted. I will keep you in my prayers!And you will be in my prayers as well.  Please let me know what your endo says.  I want all the information I can gather about tall cell and how they doctors are treating it.  I have been told that it is a rather rare variant of thyroid cancer and is resistant to the RAI.  Hope your son had a good birthday!  Tara   YaYaTara Wed, 11 Jun 2008 00:00:00 GMT   I know I haven't responded in a while. I went through RAI in June. Was diagnosed with tall cell papillary cancer. I went yesterday to my endocrinolgist. (love him) He said my Thyroglublin was 0, and my tsh was -0.4, which is exactly what they want. They want everything to be basically under or at 0 for both. This shows no trace of cancer in the body and my tsh is where it should be. I will do through RAI with thyrogen shots this time in December. This will  be a tracer dose. I still have to do the RAI diet though. (I am not happy about that) Oh, well better that then some other things.  Nicole C. Tue, 11 Nov 2008 00:00:00 GMT