> From: steve durham <sdurham@bevillst.cc.al.us>
> To: kent@via-media.com
> Subject: my leiomyosarcoma
> Date: Thursday, July 10, 1997 9:00 PM
>
> I viewed your history/experience from your Web site. I'm new to interacting
> on the web, as well, I'm also a new member to the Leiomyosarcoma patient
> 'club.' Treat me gently... I don't yet know the etiquette.
>
> I was an American expat living in Honduras and working as a river guide on a
> whitewater river near La Ceiba. In late November or early December, I
> received what I believed to be a sports related injury: an irritated area
> on my lower back where my back rubbed against the seatback of a seakayak.
> Within two hours of completion of my 3 hour paddling trip, I had a sizable
> swelling and localized pain that was not at all unlike a muscle spasm. When
> the condition persisted I went to a physical therapist for massage, she then
> referred me to a local doctor who prescribed muscle relaxants.
>
> During a two week trip to the US in February, a back specialist manipulated
> me through a fairly thorough exam and determined I had no spinal damage and
> that my muscles seemed not to be damaged, but that the swelling still
> apparent on my back was probably a harmless fatty tumor. The physical
> therapist suggested if it gave me trouble in the future I might consider
> surgical removal if it continued to bother me or changed in size. He
> instructed my wife, a licensed nurse (in Australia), how to check and
> monitor for possible growth of this tumor and/or attachment to the muscle or
> spine.
>
> Though no discernible changes occurred, I began having more and more
> problems with an irritating spot pain at the center of the lump to the point
> I began losing sleep, tossing and turning, in an attempt to find a
> comfortable position. The thought of having even minor surgery in Honduras
> was scary. I wasn't sure that my Spanish was up to the task and I knew that
> the hot and humid climate, much like a petri dish, would mean that the
> potential for infection would be high. I was finally able to locate a
> surgeon that was bilingual and underwent the removal of the fatty tumor on
> June 2nd 1997; my wife observed the operation. Underneath the fatty tumor
> the surgeon found an ovoid tumor attached to the muscle about the size of
> the first joint of my thumb. He removed as much as he could without
> affecting the muscle and the tumor was taken to a pathologist the next day
> for biopsy. The initial pathology report incorrectly diagnoseed the tumor
> as a: Rhabdomyosarcoma
>
> One week later, we have moved in with family thirty minutes from the
> medical facilities of the University of Alabama Cancer Clinic and Hospital
> in Birmingham, Alabama We stepped off the plane and went directly to a
> lab for a second examination of the tumor. Again we waited one week for the
> pathology team to make a determination: Leiomyosarcoma, most likely of a
> blood vessel.
>
> June 30th, 1997 my wife's birthday, I underwent surgery for the resection of
> the remaining mass. Approximately 3 cm of additional tumor were removed
> along with "a clear margin" of surrounding tissue.
>
> I will be meeting with an oncologist next week for consultation. I fear he
> will suggest radiation as adjunctive therapy... from my research it appears
> that Leiomyosarcomas do not respond well to radiation and that there is a
> high probability that massive dosages of radiation may cause additional
> tumors. Despite the 8+ inch slowly healing scar on my back (with
> accompanying JP drainage system) I seem to be in good health and have no
> desire to gamble with radiation. Still, I'm in an exploratory phase looking
> for ideas and suggestions. I am especially interested in immunotherapy or
> biological therapies. I would appreciate any suggestions.
>
> Thank you for your time and thoughts. We must always remember: MIRACLES DO
> HAPPEN!
>
> S.Durham