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Does anyone know any Canadian sites
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04-03-2003, 09:51 AM
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HysterSister
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Posts: 6
Hysterectomy: February 6th, 2003
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Does anyone know any Canadian sites
or Sarcoma centers near to British Columbia? Or any clinical trial sites for leiomyosarcoma? I'd like to be prepared as my radiation oncologist was not particularly optimistic and hopeful and I begin radiation tomorrow. I am also attempting to switch oncologists with the help of my GP and gynocologist as I believe support and encouragement goes a long way! I will not give up! (Stage 2/3, Grade 2). This site has been wonderful but as this cancer is one of the rare ones, it's hard to find many women that have been throught this!
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11-16-2003, 04:29 PM
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HysterSister
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Posts: 30
Hysterectomy: July 23rd, 2002
Surgery Type: TAH
Ovaries: Removed both
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Canadian sites
First, you may know that LMS is treated differently than other forms of ovarian cancer.
You may want to join an online support group. I belong to one of two international but English-speaking lists on leiomyosarcoma. It is the L-M-Sarcoma at www.acor.org. There are hundreds of members, and I think we have several in British Columbia. I'm sure they could talk about sarcoma specialists.
This is what I found in our archives:
http://www.bccancer.bc.ca/default.htm
Cancer site for British Columbia
http://www.cancerbacup.org.uk/questi...myosarcoma.htm
General information on sarcoma
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11-20-2003, 08:40 PM
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HysterSister
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Posts: 6
Hysterectomy: February 6th, 2003
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Does anyone know any Canadian sites
Yes I belong to the ACOR site but am unaware of any other people for BC except one other who went from Stag 1 to Stage 4 in three months!
We do not have sarcoma specialists which is unfortunate and I am being treated by gyno. oncologists. However IF my disease proceeds further, I will go to Prince Margaret in Toronto. My usual "signature" is
Deb (Vancouver, BC)
> ULMS Stage 3A/Grade 2 (10 x 10 x 3 cm)
> TAH (and ovaries) Feb 03 (LMS discovered by Pathologist. Positive Margins, CT> Scan/Lung XRay NED)
> Progesterone Positive, Estrogen Negative
> Pelvic Radiation (7 weeks) ended May 03. Virtually no side effects except some tiredness after the treatments ended
> Hormone Therapy followed Radiation. Megace begun June 11th (160mg). No side effects or weight gain as at Nov 2003
July 03 - CT Scan/Lung XRay NED)
Also taking VIOXX and Cimetidine (both supposedly having anti-metastatic effects) and lots of anti oxidents
Nov 03 - Pelvic/Abdominal Ultrasounds NED
Planning Lung XRay for January
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11-20-2003, 09:12 PM
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HysterSister
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Posts: 30
Hysterectomy: July 23rd, 2002
Surgery Type: TAH
Ovaries: Removed both
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Canada
You would remember the list members from Canada better than I would, I'm sure. But you may want to consider a post inquiring if any one has any suggestions. I'm always amazed at how much information that list has.
On the list, I go by my real name, Suzie Siegel. My history is: Vaginal LMS; staged 2c, very high grade; dx and surgery July '02; 6 weeks radiation; 8 mm. lung met discovered Jan. '03; 4 rounds of Gemzar/Taxotere, some shrinkage; 4 more rounds, met is now just a speck; started 6 infusions of Gemzar in October.
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