Does anyone out there have tall cell papillary?

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RE: Does anyone out there have tall cell papillary?

by YaYaTara on Fri May 16, 2008 12:00 AM

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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

 

RE: Does anyone out there have tall cell papillary?

by Nurserobin on Sun May 18, 2008 12:00 AM

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Tara:

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

 Robin

RE: Does anyone out there have tall cell papillary?

by Nurserobin on Tue Jun 03, 2008 12:00 AM

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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

RE: Does anyone out there have tall cell papillary?

by YaYaTara on Wed Jun 11, 2008 12:00 AM

Quote | Reply

 

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!

 

RE: Does anyone out there have tall cell papillary?

by elliemae1952 on Thu Jul 22, 2010 01:47 AM

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On May 05, 2008 12:00 AM 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. 

I had my appt with surgeon today and he went over the pathology report with me.  It said tall cell and also microcarcinoma.  He didin't seem overly concerned about the "tall cell" part.  he said that it does cause extra concern, but he seemed optomistic. 

I am also a BC survivor.  I was dxd with dcis in 1993.  My endo said that BC patients have a higher case of thyroid cancers. 

I had some blood tests today but will not have results for another few days (brings back the waiting anxiety I went thru in 1993. 

I am interested in knowing how you are doing.  I hope all is well.  I think that I am headed for more treatments, but, surgeon said that I need to schedule blood tests in 6-7 weeks and then see the endo in October....yesh.....

I don't have any questions because I don't have enough info on this.  I am interested in anything that you wish to share.

I am being treated at Brigham & Women's in Boston.  My endo and surgeon have good reputations for this .. I just hope that this all turns out to be a small footnote on my life.  I am 57 years old and looking forward to the day when I can kick back and relax.

Regards.

Elliemae

RE: Does anyone out there have tall cell papillary?

by elliemae1952 on Sat Aug 21, 2010 05:03 AM

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I am also new to this message board. I am 57 and dxd with thyroid ca.  Endo and surgeon are calling it follicular varient of papillary.  But, after my thyroidecomy,doc said that there was a small section of tall cell.  I was on Levoxyl 137. Endo just reduced it by half (getting ready for rai).  I was dxd with breast ca in 1993. Endo said that breast ca survivors have higher rate of thyroid ca.  I also had a tad of skin cancer.  I forget what kind it was. 

 Endo does not seemed too concerned. He said that typically patients have the rai and then have yearly check ups after that.  But, having gone thru the Breast ca business....I remember how the docs always emphasized the positive.  I've read some articles about tall cell.  I don't know if they apply to me since the one I had was very small (2 mm). I did not have any lymph nodes involved. 

I am hoping that I get thru this and can get back to work. 

I guess I will be starting the RID soon.  The doc gave me the diet and I have looked at it but cannot imagine munching on rabbit food for two weeks....although it maybe will help me lose some pounds. 

I cannot imagine what I am going to feel like with less thyroid meds.  I am trying to stay optomistic. 

Good luck to you and everybody else going thru this.

e

RE: Does anyone out there have tall cell papillary?

by nickyskye on Sat Aug 21, 2010 06:09 AM

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On Aug 21, 2010 5:03 AM elliemae1952 wrote:

I am also new to this message board. I am 57 and dxd with thyroid ca.  Endo and surgeon are calling it follicular varient of papillary.  But, after my thyroidecomy,doc said that there was a small section of tall cell.  I was on Levoxyl 137. Endo just reduced it by half (getting ready for rai).  I was dxd with breast ca in 1993. Endo said that breast ca survivors have higher rate of thyroid ca.  I also had a tad of skin cancer.  I forget what kind it was. 

 Endo does not seemed too concerned. He said that typically patients have the rai and then have yearly check ups after that.  But, having gone thru the Breast ca business....I remember how the docs always emphasized the positive.  I've read some articles about tall cell.  I don't know if they apply to me since the one I had was very small (2 mm). I did not have any lymph nodes involved. 

I am hoping that I get thru this and can get back to work. 

I guess I will be starting the RID soon.  The doc gave me the diet and I have looked at it but cannot imagine munching on rabbit food for two weeks....although it maybe will help me lose some pounds. 

I cannot imagine what I am going to feel like with less thyroid meds.  I am trying to stay optomistic. 

Good luck to you and everybody else going thru this.

e

EllieMae,

Is it possible for you to get thyrogen instead of going on the low iodine diet before the Radioactive iodine treatment? Ask about Thyrogen, if your medical insurance covers Thyrogen.

http://thyroid.about.com/b/2010/05/31/thyrogen-genzyme-thyro

http://www.ott.nih.gov/pdfs/ThyrogenCS.pdf

Tall cell papillary thyroid cancer is more aggressive than regular papillary thyroid cancer. If you have tall cell thyroid cancer, you need to monitor the Thyroglobulin level in your blood with a Tg blood test every two months, not just once a year. 

Good wishes to you in your journey.

RE: Does anyone out there have tall cell papillary?

by YaYaTara on Thu Aug 26, 2010 11:27 PM

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Hello all you Tall Cell friends----how is everyone doing?  Updates on your case?  Has anyone with TCV had a recurrence?

Tara

RE: Does anyone out there have tall cell papillary?

by nickyskye on Fri Aug 27, 2010 08:46 AM

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On Aug 26, 2010 11:27 PM YaYaTara wrote:

Hello all you Tall Cell friends----how is everyone doing?  Updates on your case?  Has anyone with TCV had a recurrence?

Tara

Hi Tara,

Yes, the tall cell is recurring. Tg at 5.6. Bumped into my wonderful thyroid surgeon, Dr. David Kutler today in a Cornell Weill Hospital elevator and he asked how I was. when I told him he said 5.6 Tg is not high. I was wondering how high the Tg needs to be before I decide to re-do 200 millicuries of RAI?

 

The last 156 millicuries of RAI caused substantial loss of saliva (xerostomia) which caused 24 cavities and 6 root canals, one extraction. All this year. An expensive, lengthy and painful side effect of RAI. I also had a trigeminal nerve flare up in my left cheek. 

Had a bout of hypercalcemia this summer. Heart beating like a rabbit, fatigue. It was scary. Was unwittingly overdosing over several months on Tums as a calcium supplement (since my parathyroids stopped functioning after the thyroid surgery). 

Otherwise 150 mcgs of Synthroid and Cytomel 5mcgs morning and night is working for me with energy.

How're you? :)

RE: Does anyone out there have tall cell papillary?

by YaYaTara on Sun Aug 29, 2010 07:52 PM

Quote | Reply

On Aug 27, 2010 8:46 AM nickyskye wrote:

On Aug 26, 2010 11:27 PM YaYaTara wrote:

Hello all you Tall Cell friends----how is everyone doing?  Updates on your case?  Has anyone with TCV had a recurrence?

Tara

Hi Tara,

Yes, the tall cell is recurring. Tg at 5.6. Bumped into my wonderful thyroid surgeon, Dr. David Kutler today in a Cornell Weill Hospital elevator and he asked how I was. when I told him he said 5.6 Tg is not high. I was wondering how high the Tg needs to be before I decide to re-do 200 millicuries of RAI?

 

The last 156 millicuries of RAI caused substantial loss of saliva (xerostomia) which caused 24 cavities and 6 root canals, one extraction. All this year. An expensive, lengthy and painful side effect of RAI. I also had a trigeminal nerve flare up in my left cheek. 

Had a bout of hypercalcemia this summer. Heart beating like a rabbit, fatigue. It was scary. Was unwittingly overdosing over several months on Tums as a calcium supplement (since my parathyroids stopped functioning after the thyroid surgery). 

Otherwise 150 mcgs of Synthroid and Cytomel 5mcgs morning and night is working for me with energy.

How're you? :)

So, does this mean you have activity?  What is the plan of action?  Your doctor seemed to think you were OK---did her recall you had TCV?

I've been a little sloppy lately with my labs and am overdue.  I will go next week.  I'm TIRED a lot and just don't feel like doing much of anything...including getting my labs done.

I hate to hear that you are having teeth/gum problems.  That may explain why all my molars are sensitive to everything including my toothbrush.   Sheesh...what next?

Let me know what you find out.  Keep in touch, please!

Best Wishes,

Tara

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