Help tall cell variant

• By debmc1958
• Reply 3711422
• January 16, 2013 at 2:41 pm
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I don't know anything about this and in fact I am new here myself. But I think you need to either go in or call your doctor and insist he explain exactly what you have and what his course of action will be. You deserve that information and asap.

• By Las4
• Reply 3711449
• January 16, 2013 at 2:52 pm
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Let me guess you went to Sloan? I too had some tall cell features in my primary 8 mm nodule and in 4 lymph nodes tall cells were present. I did not have my surgery at Msk but went to them for a second opinion on my pathology.my original pathology never mentioned tall cell anywhere. I had my pathology re reviewed by my original facility and they still say they don't see it but Msk does???

On another note - I am 37. I had my surgery 9/2011. I did have 40 LN roved as well. 7 were positive. Since surgery I've always had undetectable tg and negative antibodies- clear ultrasounds so I only go every 6 months now. After five yets I can go every year if nothing changes. I feel great and jus wanted to give you some positive energy too.

Have you had any bloods or tests run yet?

The main things that seem to be important with all pathology especially tall cell is
Is there
1. Extrathyroidal extension
2. Lymphovascular invasion
3. Extra capsular extension
4. Increased mitosis
5. Increased necrosis
6 extranodal extension

If any of these are present on your pathology I would discuss with you doctor what it means for you and how often and with what tests you will be followed with.

Take a deep breath. With all my research and experience I believe tall cell comes with a worse prognosis in the older population where it has been undiagnosed or misdiagnosed for a long long time.

• By Sks750 (Inactive)
• Reply 3711594 · In reply to 3711449 by Las4
• January 16, 2013 at 3:53 pm
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Yes I went to Sloan. All lymph nodes were clear and it was encapsulated with clean margins. I am so panicked when I look at the prognosis online. My doctor has me coming back in a month to decide whether I'll need to do RAI. I'm a mess! Thanks for words of wisdom and experience- I need them now!

• By Las4
• Reply 3711615
• January 16, 2013 at 4:03 pm
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No no!!!! Don't be panicked. Clear lymph nodes is excellent. I know this is hard for you to think about now but you will be fine. I needed rai I was told (dr fish at Sloan), not because of tall cell but because I had lymph node involvement. She uses a cut off of 5 lymph nodes or more combined with bloods etc. your tg blood test will tell you more.

• By Las4
• Reply 3711629
• January 16, 2013 at 4:06 pm
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Ps- do t read the Internet! The doctors at Sloan see tall cell a lot and deal with it every day. I would trust their expertise. Many of the research on tall cell is a bit out dated. Try to stick with what sloans tells you.

• By Sks750 (Inactive)
• Reply 3711709
• January 16, 2013 at 4:39 pm
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Thank you so much for your input. I have an appointment w Dr. Fish too...but why do I have to wait a month. Why won't they let's start RAI now if I have tall cell. I know you're right about not reading the Internet. It makes me terrified!

• By Sks750 (Inactive)
• Reply 3711715
• January 16, 2013 at 4:41 pm
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Las4 thank you for taking the time to write me and calm my nerves. It means a lot!

• By Las4
• Reply 3711718
• January 16, 2013 at 4:42 pm
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Well first off when was your surgery and have they done any initial blood work yet? Tall cell variant is not Ana absolute for rai. They take into account your bloods, US of the neck and your pathology report before they make a decision.

• By Las4
• Reply 3711734
• January 16, 2013 at 4:47 pm
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Oh and no problem! I Remeber feeling the same way you are now. It will get better. Terr are many days and weeks I don't even think about it anymore. Life will become more normal

• By Bsmith302
• Reply 3711988
• January 16, 2013 at 6:09 pm
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I also had a 1.3 cm nodule pap thyca with Tall cell variant (TCV). No Lymph nodes involved. Tall Cell can be a little more aggressive and is sometimes resistant to the RAI. The fact that yours was encapsulated is a very good sign. Mine was as well. My doc suggested RAI and I had good uptake. Just had my first 6 mos check up and it looks like all is good. Don't let the TCV freak you out. Success rates are still very high. My doc said they will most likely just watch a little closer. Every 6 mos right now. There is a lot of scary info you can read about TCV. However, I think if you wait long enough, you will hear many success stories from others on here as well. If you have any questions, please feel free to message me. I did a lot of research on TCV when I received my diagnosis.

Hang in there!
Brent

• By Sks750 (Inactive)
• Reply 3712124
• January 16, 2013 at 7:04 pm
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Thanks so much for the encouraging words! I just had my surgery last week. Why do they wait a month to take the blood to check and decide for RAI? Brent, do you have any survival statistics for TCV? Thanks a ton! Suzanne

• By Las4
• Reply 3712165
• January 16, 2013 at 7:19 pm
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One reason is because normal thyroid tissue produces thyroglobulin (tg) as well as most pap Thyca tissue. After your thyroid is removed, you still have tg floating around from what your normal thyroid was producing so you need to wait like 4-8 weeks for that to be eliminated from your body. Then the blood test will be more of an accurate picture as to if you have any tissue left over they need to destroy with rai. Don't be alarmed if thyroglobulin is not considered undetectable at your first blood draw since it is impossible for them to remove every single normal thyroid cell since the thyroid is an organ that is attached to other structures.

Try not to get caught up in statistics. You and I are not statistics. My mom had lymphoma 14 years ago and she is doing so well. I Remeber her oncologist saying..... Statistics are just that., statistics. In medicine they don't know why stage 1 victims will die while some stage 4 victims live. It's positive outlook, laughing and enjoying that win. Can you tell I don't want you to worry? I know it's hard but I'm telling you I have been on your exact shoes except I DID have some tall cells in my lymph nodes and I'm doing well one and a half years out. You will too!!! With Thyca you just have to get used to dealing with it like a chronic thing that you always have to watch.
HuGS

• By LuckytohaveAbbeyRose
• Reply 3712288
• January 16, 2013 at 8:03 pm
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I was devastated when I got the pathology report that said TALL CELL VARIANT. In fact, I was so upset that I got two additional opinions! Anyway, when I saw Dr. Fish at MSK for my second opinion, she said they do not treat TCV any different than plain old papillary carcinoma. In fact, she said that I wouldn't need RAI (she was wrong) and that she would just watch with blood work and US. My third opinion came from UPenn and she saw TCV as well as warthin-like cells. My docs were all up in arms about the TCV and were very concerned. After I saw Dr. Fish, however, I felt much better about it and I am doing fine. Had my RAI on 12/03/12 and, so far, no problems or issues to speak of. You will get through this. My best advice to you is DO NOT read the studies on the internet. They are all very pessimistic and extremely scary and depressing.

• By Sks750 (Inactive)
• Reply 3712299
• January 16, 2013 at 8:05 pm
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Thanks so much! Thank goodness for this support group- it got me through the day.

• By LuckytohaveAbbeyRose
• Reply 3712351
• January 16, 2013 at 8:23 pm
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When I first got the news, I asked people for positive stories that would give me some hope. I got several responses from folks who were many years post TT and doing very well. Many of them had very high doses of RAI because of the TCV, but in more recent years, the trend is to give as little RAI as possible, even if with the more aggressive variants. BTW, do you know if you are BRAF positive? Most TCV patients are. I would be interested to know if you have the BRAF mutation.

• By Las4
• Reply 3712402
• January 16, 2013 at 8:39 pm
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Not only are most TCV BRAF positive but most classic pap are braf positive too. I think they are really only scratching the surface with their understanding of BRAF in Thyca.

• By Bsmith302
• Reply 3712750
• January 16, 2013 at 10:27 pm
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Lori you pretty much explained the reason for waiting with the Tg levels. Glad to see you are doing well!
Suzanne, they also want your body to have time to heal from your surgery. Even though you had TCV cells, this is still Pap Thyca and it still is pretty slow growing. So there is time. Survival rates, I don't think I had much luck with. I think it is still all tied into Pap. The one number I did read was that TCV had a slightly higher recurrence rate than the other variants. 15%-30% I believe. Don't let that be too alarming, it is still pretty low. They will monitor you closely with u/s and Tg levels. Catching it early I think gives the higher success rates.
I was wrong earlier on the size of my nodule. I had 2, one was 3.6 cm and the other .9 cm. Geesh it has been a year and I am already forgetting. I know this can be overwhelming right now. Just hang in there and you will get through all of it soon enough! Even to the point you will forget about some of it too. I think finding out about TCV just helped me stick to the LID more closely. I was bound and determined to make sure the RAI had the best chances of working. I went with more of a No Iodine Diet. I am OCD like that, haha.
P.S. Based on the size of my nodule, RAI was not really a question for my doc.

• By Las4
• Reply 3712812
• January 16, 2013 at 10:48 pm
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Hey Brent!
Yes I'm doing well and I am soooooo glad to hear your are doing the same. I remember too well how Suzanne is feeling and I'm so glad we are both on here to give her at least a perspective of being over a year out from diagnosis. I've graduated to 6 month visits with bloods and US. I did have the rai as well. It's so nice that we can all come together and support each other!
Here's to a healthy happy 2013 and more.

• By GiveMeStrength
• Reply 3712937
• January 16, 2013 at 11:53 pm
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Lori, I have some Tall Cell features in some of my cells and am also being treated at MSK. I had lymph node involvement (3 out of 40 ish positive) and some extension into fat tissue and nerves. As I'd had a CT scan with contrast before my surgery, I waited 4 months to have RAI and was on the Low Iodine Diet (I overdid it and was on it for over 2 months just to make sure that I got rid of as much iodine as possible). I also made antibodies to TGB, and since my dose of 150 mci in December 2011, I now have undetectable levels of TGB, and actually no longer make antibodies. This Friday through Tuesday I will have my 18 month followup ultrasound and blood work with stimulated TGB and am of course hoping for the same good news. My surgeon and endo at MSK are unimpressed by my Tall Cell features and told me that they didn't think that it would make any difference to my longevity, thyca-wise.

I agree with the advice not to panic. One step, one test and treatment at a time. Now is the time to look at whatever you want to refine in your diet and lifestyle in order to be at your best, health-wise, from now on.

• By BrennaMichelle
• Reply 3712948
• January 16, 2013 at 11:58 pm
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I do not have TCV but I have diffuse sclerosing, it is another aggressive form of pap. I ended up needing a neck dissection. Have had 58 Lymph nodes removed and 44 were positive. They still say it is just as good survival rate as regular pap. We have to be more aggressive at the beginning but my outlook is still positive. And it sounds like what they are telling you- a higher reoccurrence rate.
Suzanne- I was diagnosed last August. I am 33 with two young kiddos. I had all the thoughts you are having. I was freaked out. I feared the worst. I am now 5 months out. I have had two surgeries and one round of RAI. I am still facing a few more months before I will feel like the worst is over. But I can tell you this...it is better. Life is more normal. I am not afraid anymore. This cancer will be a pain in my ass but it is not going to end my life. I remind myself of that all the time... Hang in there!