Interesting transcript and video - Dr. Tuttle

Rustifox

The following information has been shared courtesy of the Canadian Thyroid Cancer Survivors group, Thry'vors:

"Members who attended the 2005 University of Toronto Forum on Thyroid Disease at Mount Sinai Hosptial had a lot of positive comments about the presentation made by Dr. Michael Tuttle (Memorial
Sloan-Kettering Cancer Center, New York), the keynote speaker. He did a good job of summarizing the key debates about thyroid cancer diagnosis and management, and outlined why 'not one management approach fits all patients'.

Dr. Tuttle recently gave a presentation on the 2007 Thyroid Cancer Clinical Practice Guidelines of the National Comprehensive Cancer Network. The presentation focuses on the latest changes to the NCCN Guidelines. Topics include diagnostic procedures, primary treatment, post-treatment monitoring and recurrent and metastatic disease. His presentation explains how these updates will impact management of thyroid cancer care.

The transcript and video of his presentation are available on Medscape."

(Registration for Medscape is required, but is free, and well worthwhile when doing research):

"NCCN Thyroid Carcinoma Guidelines Update
Dr. R. Michael Tuttle Released May 9, 2007

Text Version and Slides
http://www.medscape .com/viewprogram /6992_pnt

Video/Slide[ 35 minutes approximately]
http://www.medscape .com/viewarticle /555760

The complete 2007 NCCN Thyroid Cancer Clinical Practice publication is available on line at:

http://www.nccn. org/professional s/physician_ gls/PDF/thyroid. pdf

Thanks to Thry'vors - http://www.thryvors.org - for sharing this excellent info,
and for their terrific work in Canada.

Paideia

Rustifox,

I really enjoyed this video, thanks.

I'll be off my Cytomel in 5 more days. Oh joy. I get crying jags now, wonder what it'll be like come Wed. Have you heard much about anyone having chronic lympocytis thyroiditis (sp)/Hashimoto's Disease?? That came back in my pathology report. Also, 2 lymph nodes were found to by highly suspicious. Wonder if the neck dissection will be determined by the FBS. Any ideas?

How are you holding up? You are quite the researcher?

Best,
Susie

Rustifox

Paideia said:

Rustifox,

I really enjoyed this video, thanks.

I'll be off my Cytomel in 5 more days. Oh joy. I get crying jags now, wonder what it'll be like come Wed. Have you heard much about anyone having chronic lympocytis thyroiditis (sp)/Hashimoto's Disease?? That came back in my pathology report. Also, 2 lymph nodes were found to by highly suspicious. Wonder if the neck dissection will be determined by the FBS. Any ideas?

How are you holding up? You are quite the researcher?

Best,
Susie

Hi, Susie - hang in there.... I know this is a very hard time for you.

I could go from crying to laughing, to rage and back to crying at the drop of the hat when I was really hypo, too... it's not you, it's the missing hormones in your body. Try to keep the stress down as low as possible for the next 3-4 weeks, ok? That helps a little - anything that makes you stress, even a tiny bit, is a big draw on your emotional state and energy right now.

It is similar to your energy levels - if you 'tap them out', you'll feel worse, so try to be really kind to you. This is a great 'story' to remind us that we have a limited amount of energy at times like this; while it comes from a lupus patient, it is very similar to what we experience when hypo - spend your energy positively and carefully:
http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

If the suspicious nodes in your neck are shown to be smaller than 1cm in the I-131 WBS/whole body scan, they will often expect that the RAI treatment dose (usually at least 150mCi's with node involvement) will take care of them... but if they are appearing to be larger than 1cm, it becomes very hard for the RAI to treat that depth of tissue, so most often surgeons will chose to do more extensive surgery, 'debulking' any of the concerning areas. The uptake on the WBS (whole body scan) will help plan these next steps.

The good thing is that the Hashimoto's disease will ultimately not become a long term problem for you, as the goal is to destroy all thyroid tissues - so any remaining hashimoto's will be eliminated by the radioactive iodine treatment over the next 6 months to a year, too.

But it will be important to always have both thyroglobulin and thyroglobulin antibodies tested. This is recommended for all of us - not just those who had Graves or Hashimoto's - as antibodies can affect correct readings on thyroglobulin levels.

Hashimoto's (and Graves) is often an autoimmune type of response by thyroid tissues, and may cause your thyroglobulin antibodies to be high; if thyroglobulin antibodies are high, it makes thyroglobulin itself less reliable as a long term 'marker' for persistent or recurrent thyroid cancer, so long term follow up with very thorough ultrasound, and intermittent I-131 scans is needed. In time, the antibodies will often disappear, then thyroglobulin becomes reliable again.

The thyroiditis and Hashimoto's would likely have become a problem to you down the line, if you had not had the total thyroidectomy, so it is/was a good thing that the thyroid gland has been removed.

But for now, don't worry at all about these things... one step at a time, one treatment at a time, one day at a time is plenty to deal with when we are hypo.

Have you started the low iodine diet yet? You want to make sure you have at least 7 solid days of absolutely stringent/no mistake LID (low iodine diet) before your scan and/or any treatments - many doctors recommend 14 days, as we often make mistakes in the first week.

Here is a link to Thyca's free LID Cookbook, just in case:
http://www.thyca.org/ThyCa Cookbook 011804.pdf

And for anyone else reading this with more time than Susie has before their low iodine diet, there is a LID Cookbook on the market now, too - apparently it is very good!:
http://www.thyroidcancerdoctor.com/diet.html

I do love research - I've found that it is a 'coping' method for me, to better understand what is going... in the early stages after my diagnosis I was a little too trusting, to my disadvantage, so I'm much happier if I know what is going on, and am sure my doctors are following the 'gold standards' for treatments, too. Glad you enjoyed Dr. Tuttle's presentation. Keep in touch, and let us know how you are doing, ok?