Does anyone out there have tall cell papillary?

You are all so great to give advice and join in.  Like you said--it's nice to have company and not feel so all alone.  So..what do we watch for with our lab work?  I know it's a balancing act with Synthroid to have our levels "just right," however I can't even remember what is a good sign and what is a bad sign.  I'm having my Thryogen on 5/12+5/13 and then the tracer dose on 5/15 and the WBS on Friday.  I've been on the LID for 3 entire weeks!  I'm very nervous about this scan for fear they will find that the cancer has spread.  Knowing you all are there and understand is a great comfort.  Is Tall Cell curable?  Anyone know if we have to be isolated from others for the tracer dose?  Thank you!  Tara

Every case is different as with any type of cancer.  Doctors don't know why some patients do well and others with even a seemingly low risk cancer have recurrences and don't necessarily do well.  With thyroid cancers a lot of factors are taken into consideration such as age, gender, size of tumor, and whether contained or not, just a few prognostic values in determining treatment and follow up.  I'm still confused on the actual blood values they are looking for.  I do know that they want to keep our levels slightly on the hyper side so the body doesn't try to produce thyroid hormone.  I had my blood work done before I went away but won't know what my numbers indicate until next week.  Depending on those numbers, however, I may or may not need a second course of RAI, only this time he did mention thyrogen as a means to get levels ready for treatment.  As I learn more about the actual numbers I'll pass it on. If you are cancer free as per your scans, tests and blood values you can consider yourself cured but must be followed because there is a likely hood of recurrence with some patients but as long as it is contained within the neck area you can continue to do well.  Best of luck to all of you!

I am so pleased that you all are so positive about this.  I know that it could have been a much worse diagnosis, so I feel very fortunate.  Sometimes a good scare can make a person re-set their priorities in life and remind us that we are just here for a brief time in the scheme of life.  I go next week for my Thyrogen, tracer and scan.  My insurance company denied my doctor's recommendation for Thyrogen and I had to put it on a charge card (of all things to have to charge!).  I have my son's wedding in May and I wasn't about to go hypo right before his wedding.  I remember being so weak that I could barely walk up my staircase.  I wish much luck and prayers to everyone.  I'll keep you posted on my results.  Thanks for your comments about tall cell.  I don't feel quite so alone out here. xoTara

 

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!

Please let me know how you like Dr. Fagin at S-K and what he says about Tall Cell specifically.  I hope you get answers for us!  Good luck--I'll be thinking of you.

 

I had BC diagnosed in 2003 and that knocked me for a loop but I am doing well.  The thyroid cancer was also a surprise and found in matter of factly so I'm grateful for that particulary being this more aggressive type.  When I was 21 I was diagnosed with melanoma which was more recently reversed and said to be a benign lesion after spending 14 days in the hospital and going through extensive surgery etc. and living as a cancer patient with the possibility of recurrence on my mind.  I didn't learn that it was not melanoma until after being diagnosed with breast cancer so you can say I have been living as a cancer patient for over 30 some years.  The key here is living.  Again, best to all of you.  Enjoy the things that are important and make sure the people that are closest to you know how much they mean.  No regrets. 

I will.  I go May 29th.

 

On 5/5/2008 Leemg wrote:

I had BC diagnosed in 2003 and that knocked me for a loop but I am doing well.  The thyroid cancer was also a surprise and found in matter of factly so I'm grateful for that particulary being this more aggressive type.  When I was 21 I was diagnosed with melanoma which was more recently reversed and said to be a benign lesion after spending 14 days in the hospital and going through extensive surgery etc. and living as a cancer patient with the possibility of recurrence on my mind.  I didn't learn that it was not melanoma until after being diagnosed with breast cancer so you can say I have been living as a cancer patient for over 30 some years.  The key here is living.  Again, best to all of you.  Enjoy the things that are important and make sure the people that are closest to you know how much they mean.  No regrets. 

Interesting background.  Before I was diagnosed with papillary tall cell, I had been diagnosed 3 times with melanoma and had surgeries each time.   We must have predisposition for cancers.  Other than that, I'm healthy!  I continue to stress a little about my WBS next Friday.  Everyone be sure and post your results--you are in my prayers. Tara

 

I've actually had gene testing, BRAC l & 2 and others as recently as results this week and thus far no mutations found and my PTEN which is a cancer cell control gene or protein is normal.  Of course, the body is way too complicated and they can only test for what they know. 

 

On 5/10/2008 Leemg wrote:

I've actually had gene testing, BRAC l & 2 and others as recently as results this week and thus far no mutations found and my PTEN which is a cancer cell control gene or protein is normal.  Of course, the body is way too complicated and they can only test for what they know. 

Who did your testing?  I wonder if that's a good option for me?  Doesn't sound like there are too many of us out there with tall cell.  Either people don't realize that is what variant they have or it's not that common.  Never a dull moment, is there? I go tomorrow for my 1st day of Thyrogen.  I'm very nervous about my WBS on Friday.  I'm on my 5th week of LID and I just want something good to eat---like a slice of Chocolate Raspberry Truffle Cheesecake from The Cheesecake Factory!

 

I hooked up with a genetic counselor connected to a large inner city hospital after I was diagnosed with breast cancer.  She did a family profile on me and decided there was enough there and with my own health history to have it done.  It was covered by my insurance too by the way which was a shocker but you have to meet certain criteria.  She has never charged for her services.  Yes, I'm awaiting my blood work to see if I will need a second dose of RAI even though a positive tall cell lymph node was not phased by the first dose and I had to have a neck dissection.  There is a good possiblity I may not need it but don't know for sure until my thyroglobulin results are in.  It will be a month Thursday.  Can you believe the hospital lab is that behind.  In the past year I acquired sudden hearing loss with pulsatile tinnutis in my right ear and they can't find the cause although pulsatile tinnutis usually indicates it is of a vascular nature so that is been taking up my time currrently.  I noticed my hearing is getting progressively worse which was confirmed by a recent hearing test.  Never a dull moment.  Good luck, sounds like you'll almost ready for the Cheese Cake Factory, treat yourself!