Editor's Note: CSL is in receipt of the following letter. I am posting it here without comment; should any of our readers wish to contact Ms. Achee, they can do so by writing to her care of CSL at citizenscientistsleague (at) gmail(dot)com.
My physician husband has been diagnosed with Leiomyosarcoma of the urinary bladder. He has successful surgery in February of 2011 at MD Anderson Cancer Center with Dr. A. Kamat.
However this particular type of cancer is very rare, especially where it was found.
I do not want to wait for it to return as it is supposed to because of its aggressiveness and vascular nature.
We have 58 blocks of tissue samples at M D Anderson now. I want to find researchers who will take up my cause and help with research this particular type of cancer. Because it is so rare, there are not many research efforts are out there. We have been in touch with a couple of researchers - one here in Aurora, Colorado who was doing clinical trials, and a researcher at Stanford who said he was not doing anything on this type of cancer presently. My husband was not eligible for the clinical trial under Dr. Anthony Elias at the Anschutz Cancer Medical Center in Aurora, Colorado because it had not metastasized although it did affect one node down at the primary site.
Can you help guide me - to find similar Leiomyosarcoma (bladder) patients? I have tried to work through the Leiomyosarcoma Direct Research Foundation - but that is only a foundation of one person who says he does not have the staff to beat the bushes to find researchers. That is disappointing to me and I need to move forward with my efforts but want help and guidance. Please help me.
Thank you so much,