Tuesday, June 14, 2011

Wellspring Thyroid Patients' Forum June 14

We made it [through our thyroidectomies]!!!! Chrissy, Nadia (me), and Lindsay are all smiles. I met these ladies at the Thyroid Cancer Patients' Forum in May and now they are here at another Thyroid Cancer Patients' Forum today in Toronto. This forum was organized by Wellspring cancer support centre and held at Women's College Hospital. The talk was called "Thyroid Cancer: Navigating Support and Education Resources for Patients" presented by Dr. Catherine M. Kelly, MD, FRCPC a Clinical Educator and an Associate Professor of Medicine at the University of Toronto. She is the Division Director of Endocrinology at Women’s College Hospital. Often at these forums, there is a lot of clinical talk and then after you get to share information and concerns with other patients and survivors. This particular forum today was pretty intimate with only about 7 of us patients in attendance. (I recognized 4 of these patients, myself included. :-) I had a number of my questions answered and I must say I'm a little pissed. First, there are so many ways to "kill a horse" (or treat thyroid cancer, I know an ironic phrase for a vegan) depending on the endocrinologist and their experience, research studies, the surgeon's skill, intuition, and the direction of the wind, also seems to be a factor. All jokes aside (no seriously, can the side of the bed you wake up on be a factor?), is it possible that my experience of looking for other opinions related to my radiation dose were all for not? If you read this post, you'll get the idea. According to Dr. Kelly, she also agrees with the studies that have come out which do not indicate a difference in the effectiveness of a RAI dose of 30 miC versus one of 100 miC. You know when you here something over and over again and the lightbulb starts to come on? Well, this is what happens when I attend a forum like this. I learn more about my illness and how I can access better care. I am also so thankful to meet other thry'vors (thyroid cancer survivors) who have lots of information and knowledge to share. Chrissy recommended some excellent scar treatments (like Dermatix and silicone bandages) which I might be able to use in place of the steroid injections that my surgeon suggested. (Again, if the less invasive treatments don't work, I can always do the steroid injections.) Then Lindsay recommended a good book that I have been meaning to read called "EVERYTHING CHANGES: The Insiders Guide to Cancer in Your 20s and 30s" by thyroid cancer survivor, Kairol Rosenthal. This book contains many stories from young adults also dealing with various cancers. Definitely, a summer read. (I'm currently reading two other books already so Rosenthal's book will have to be next.)

I am so thankful for this forum, the wisdom of patients and survivors, and the many options out there for treatment. I am also so thankful that Chrissy and I could have lunch and share our experiences and resources. I leave this day once again inspired.

1 comment:

Claudia said...

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