Dr. Gladdy called me this morning...... She has done some research on the family gene of Gorlin's Syndrome. Because my dad and brother are positive for it , she wants me to get tested for it as well. If it is positive, radiation will not be a possibility, as it WILL cause skin cancer.... I need to get Gerry's genetics papers and my father's if he has them and send them to her. I now have to schedule a rib x-ray as well as a jaw x-ray. They said they will be able to tell if I have Gorlin's through the x-rays. If they show positive for Gorlin's I will be getting chemotherapy instead. The good news part of that is if I need chemo instead of radiation, chemo will be done in Ottawa. Dr. Gladdy strongly feels that I do have the Gorlin syndrome as having this type of cancer at my age is very very rare. The usual age for sarcoma is 45 and up. She said that Gorlin's syndrome people are very susceptible to sarcoma and skin cancers. Going to call Dr. Auer later to get the schedule for the xrays and post later.
5 comments:
I had a gut feeling it could related because of your PCOS. It certainly answers a lot of questions, doesn't it?
Grandma and Mon Oncle Serge have it as did Dominic.
I don't think Dad has any paperwork stating he has Gorlin's but he regularly has BCCs removed and has had 3 large cysts in his sinus cavities removed in the last 2 years. As well as many from his jaw over the years. He has the little red pits on his hands too and cannot raise his arms straight above his head due to an extra ligament under his shoulder blade.
Sending love, always,
xoxoox
X-rays will be tomorrow after MRI
yeah the pits (tiny craters in the palms of the hands) are usually a give away or so my dermatologist says and also the rib x ray should tell. I know I have something called Sprengel deformity
http://en.wikipedia.org/wiki/Sprengel's_deformity
and that is usually obvious without an x ray. Also there is a chromosome number 9 that is affected lots of medical Chinese on this here, not sure if there is a test for that.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1914731/
Anyway if you still me to get some DNA/genetic test let me know
Good thing your doctor know and is aware of all the possibilities it is a very rare syndrome and generally unknown in the medical world most doctors will give you a blank look and the few that know always amaze me. I was a guinea pig for some students and one bright one guessed it and named with before the teaching doctor could finish the list of symptoms
http://www.cyberpresse.ca/la-tribune/actualites/201201/06/01-4483401-un-acide-pour-tuer-les-cellules-cancereuses.php
prolly ahead of my time and so much info out there but it might be worth mentioning to your dr
TELL THE DOCTOR ABOUT YOUR SHARP PAINS YOU'RE GETTING ACROSS YOUR ABDOMEN!!! They last about 15+ seconds & sometimes come in waves of 3 or more!!!!!!!!!
Luv ya!!!!! :-)
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