“Find GENUINE sarcoma expertise, be relentless, put together a plan and execute it. Handle the emotional fall-out later. Denial will get you killed.” That was the standard mode of operation for Dr. Doreen Kossove, known to many simply as Dr. Dee. When someone new showed up seeking treatment advice after finding out they had cancer she attacked. If you asked for her help you better be ready. She had lots of sound advice and dished it out with a fury. She hated cancer and incompetent medical care. If she felt you weren’t taking matters into your own hands and making sure you got the proper care watch out! Many faced Madame Brimstone’s relentless push for them to do the right thing.
It’s hard to estimate how many lives she touched during her own 8 year battle with cancer. Few who came to any of the ACOR lists she was on seeking help didn’t find a ready response from Dr Dee.
As we have seen so clearly since the announcement of her passing,
Doreen was truly unique. She exemplified how an educated and engaged
patient can transform the odds of thousands of other patients by
showing them how to use information and peer support to best navigate
the healthcare system. She started as an Leiomyosarcoma patient but
very quickly she became MUCH MORE. Her information-rich website was
and remains amazing and is always the first entry to show up when you
google “leiomyosarcoma”. Right from the beginning Doreen changed the
outlook of this list and directed this community to a more
scientifically oriented group, to the benefit of countless people who
often do not understand how powerful her influence has been.If you think this is a fitting way to remember Doreen, please help us by making a donation either online at http://www.acor.org/donate/now/drdee.html or by sending a check to ACOR, marked “Dr. Dee Memorial Site”. If you make your donation online, Alison Woodman & Doreen’s daughter will be
instantly notified.
Gilles Frydman, founder ACOR
I’m not sure how many ACOR lists Dr Dee was on but she was on every one I ever joined, dishing out advice in her special way. Sometimes so ill she was completely bed ridden. Seemingly tireless as she led countless folks down the right treatment and care path.
I found the ACOR sarcoma list shortly after being diagnosed with cancer. Dr Dee was one of several folks who immediately reached out to me and started feeding me detailed instructions on how to proceed. They guided me through the next week and a half when my diagnosis changed 4 times. First dx, DFSP (dermatofibrosarcoma protuberans) with a Fibrosarcoma component. Then, Leiomyosarcoma (LMS). The third type actually escapes me at the moment! Then, with the aid of Dr. Dee and others the best sarcoma pathologist in the country figured it out, malignant glomus (glomangiosarcoma). I also was pretty much ordered (under threat of death) to get to a sarcoma center. I went to MD Anderson Cancer Center in Houston and Moffitt Cancer Center in Tampa. Second opinions are also vital as Dr. Dee was quick to point out. That will be five years ago in a little over a month. Had I stuck with the original course recommended by my local oncologist I’m not entirely sure I’d still be alive.
CNN coverage of her death: The life and death of an Empowered Patient – CNN.com
She always ended her notes with: “Together we are more, and more effective.” Madame Brimstone is gone and we all are a little less. The world is missing a hero.
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