Does anyone out there have tall cell papillary?

 

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!

Would you mind asking him who specializes specifically in TALL CELL?   I had my WBS today and it was clear!!  Let me know what you find out!  Good luck!   Tara

 

Tara:

 I definitely will and as soon as I know anything, I will email back.

 Robin

Tara etc:

I had my meeting with Dr. Fagin at MSKCC and had all of my research clarified.

First, I had my WBS and thyroglobulins in May and everything is clear. So I am now considered "cancer free" or 'in remission".  Yahoo!!!

Second, this is what I found out about tall cell.  Like I had mentioned earlier, it is very hard to diagnose and treat.  Once you have 2 WBS's that are negative (done annually and not sooner), you can span the scanning out to 2 years or more.  He told me that since I had the negative scan in May with the thyroglobulins also being undetectable that my chance of recurrence was less than 10%.  This is great news as there is no guarantee with anything, so it could come back sooner or later but at least i know that my stats wend down from the original 30-40%.  So the next step is neck ultrasound in July and labs (TSH and thyroglob in Sept) then every 3-4 months after that for the next year. 

3.  I will always be nervous with every scan and every lab test but that is part of being a "cancer patient".  Though I do feel much better right now about being on "this side of the curtain".  As i think you already know, I am a nurse and worked in oncology, specializing in head and neck cancer for 10 years before moving to my current position.  It is definitely easier said than done as I did not know the horrible feeling of waiting to get the results (although, my benefit was that since I work in the hospital where all my doctors are, I am able to see my results before they do). 

I hope this helps you and everyone else.  I continue to check the site so if you have any other questions, please let me know.

Blessings to everyone,

Robin

 

On 6/3/2008 Nurserobin wrote:

Tara etc:

I had my meeting with Dr. Fagin at MSKCC and had all of my research clarified.

First, I had my WBS and thyroglobulins in May and everything is clear. So I am now considered "cancer free" or 'in remission".  Yahoo!!!

Second, this is what I found out about tall cell.  Like I had mentioned earlier, it is very hard to diagnose and treat.  Once you have 2 WBS's that are negative (done annually and not sooner), you can span the scanning out to 2 years or more.  He told me that since I had the negative scan in May with the thyroglobulins also being undetectable that my chance of recurrence was less than 10%.  This is great news as there is no guarantee with anything, so it could come back sooner or later but at least i know that my stats wend down from the original 30-40%.  So the next step is neck ultrasound in July and labs (TSH and thyroglob in Sept) then every 3-4 months after that for the next year. 

3.  I will always be nervous with every scan and every lab test but that is part of being a "cancer patient".  Though I do feel much better right now about being on "this side of the curtain".  As i think you already know, I am a nurse and worked in oncology, specializing in head and neck cancer for 10 years before moving to my current position.  It is definitely easier said than done as I did not know the horrible feeling of waiting to get the results (although, my benefit was that since I work in the hospital where all my doctors are, I am able to see my results before they do). 

I hope this helps you and everyone else.  I continue to check the site so if you have any other questions, please let me know.

Blessings to everyone,

Robin

Robin - thank you so much for responding.  My son got married and I have been out of town for over a week so I am just not back checking the board.  Congratulations on the good news!!  I am SO happy for you and it give me hope.  I wish my thyroidglobulin was undetectable, but it wasn't.  I don't think it ever has been.   My WBS was OK in May but I have to have a PET scan now to confirm (I have had melanomas through the years---I'm Italian so it's not a sun-thing, but good old heredity).  So basically...did your doctor say Tall Cell was not to be concerned about any more than other cells?  I am glad that you have had the experience of working in oncology.  Do you think a second opinion for me from my oncologist would be good insurance?   I am constantly tired and feel that something just isn't right with me.  What is your synthroid dose?  Sorry about all the irritating questions!