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Requesting Tall Cell Papillary Info..

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Subject: Requesting Tall Cell Papillary Info..
Date: 05/28/2008
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
Subject: RE: Requesting Tall Cell Papillary Info..
Date: 05/29/2008
On 5/29/2008 Leemg wrote:

I've
been told it has only been the last several years that they have
designated a sub type group of papillary cancers based on the fact the
cells may look different and behave differently.  Tall cell is just one
sub type and it is named that because the cells are actually taller
than normal papillary cells.  They are just learning and collecting
data on how it reacts.  My endo claims it is still a papillary thyroid
cancer which is the most common and treatable and he claims they treat
it the same but I have discussed this with several other doctors who
treat thyroid cancer plus have done research on line and all indication
is that it tends to be more aggressive in nature and is further along
when first diagnosed which was the case with me, I'm stage 3.  It is
not unusual for papillary thyroid cancer to metastisize to the neck,
actually it is very common.  The problem again with tall cell, it acts
more agressively than its slower growing cousin, the common variety. 
They have found, and again in my case, that it may or may not respond
to RAI and may not show up in the scans, again I am a case where it has
not. 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 indicate
a problem brewing.  Also, routine ultrasounds of the neck should be
done as thyroid cancer first spreads to the neck before moving to other
parts such as the lungs and bones.  That is why I did not feel
comfortable knowing I had a positive lymph node in my neck and stayed
on top of it.  Even the ultrasound did not pick up the additional two
lymph nodes found on pathology.  And I read that it is not unusual to
find more lymph involvement when they actually remove them and do
pathology.  Since you present with questionable swelling, I believe, in
the neck region I would push to have at least one biopsied to insure
that they are not cancerous in which case I would push to have a neck
dissection.  Why allow it to do whatever if you can address it now is
what I say.  I had breast cancer 4 years ago and I don't need to mess
with positive lymph nodes.  Yes, sometimes you have to be your own
advocate.  My endo is a nice guy and kept telling me I would be okay
and then he tells me about a 40 some year old male whole has spread and
is not doing well etc.  I don't need any doctor telling me Oh, I'm
sorry I didn't think it would do that after the fact.  In situations
such as this I always seek a second opinion and do as much research as
possible.  When you have your appointment then you can address those
points, point by point.  One doctor told me he appreciated that I was
so well informed.  I believe they take you more seriously too.  Today,
with HMO's and doctors having to move patients through to exist, it is
easy to become just another patient.  My doctors know me as a person. 
Good luck to you!  (I'm from NJ)


You have
been very helpful with this information.  I don't see my doctor for 5
months, so I might see my oncologist in-between for his opinion..  I
wonder if a PET scan would pick up anything missed by our WBS?  I don't
know what kind of a scan we have in a WBS--do you?  I also had another
cancer years ago, so I don't like to put any checkups off.  Do you
happen to know what our TSH and thyroglobulin levels should be?  They
told 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 back
east (NY + NJ) and have considered Sloan-Kettering for a second
opinion.  Thank, Tara
Subject: RE: Requesting Tall Cell Papillary Info..
Date: 05/29/2008
I am scheduled for a second opinion from an oncologist on June 11.  I
will 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 win
this battle!
Subject: RE: Requesting Tall Cell Papillary Info..
Date: 06/01/2008
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!
Subject: RE: Requesting Tall Cell Papillary Info..
Date: 06/11/2008

 

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

 

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