My 20-year Cancerversary
By Sharon Anderson
1/14/22
Sharon Anderson is the President of the Leiomyosarcoma Support & Direct Research (LMSDR) Foundation. She is a full-time social worker and a certified cancer coach. Sharon lives in San Francisco, California, where she raised her two (now adult) sons. Sharon is also a 20-year survivor of stage IV uterine leiomyosarcoma. She has been tumor-free for the last 17 years.
When I was diagnosed with uterine LMS on January 14, 2002, I never expected to live more than a year or two. My friend had died from uLMS just months before I was diagnosed. I had watched her suffer through treatments that didn’t work. I read all the research on LMS I could find, and it was all grim. So when my oncologist advised me to have chemo after my hysterectomy, I declined. I also declined the pelvic radiation that the tumor board recommended.
I met some knowledgeable LMS patients in the ACOR online group. I was not getting CT scans every three months, and they let me know that this was a problem. They changed my attitude, and I heeded their advice. I fought hard to get my gyn onc give me a CT scan. She finally compromised and ordered a chest x-ray. Sure enough, there was the first lung met, 1cm. I fired the gyn onc and found a sarcoma specialist. I had a video assisted thoracic surgery (VATS) and was NED (no evidence of disease) again.
My relentless research led me to a telomerase cancer vaccine trial at Dana Farber in Boston. For four months I flew from coast to coast every other week to get the vaccine. A fellow ACOR member put me up at her house for free. I spent four days each of those weeks at Dana Farber getting blood tests and an immune system stimulant. On the fourth day I received a dose of the vaccine. After four months, my next CT scan showed a 3.5 cm tumor growing in a lymph node in my chest. The vaccine had not worked for me. Surgery followed, and I was NED again.
An online friend and pediatrician who had retroperitoneal LMS, Delia Pratt, suggested having my tumor tested for estrogen and progesterone receptors. My oncologist accommodated my request, stating, “Why not? There are no real treatments for your cancer anyway.” When the test came back 99% positive for both estrogen and progesterone, he referred me for surgery to have my ovaries removed. It took about six months to convince the insurance and gyn onc (the one I had fired) to do the surgery.
After all, there was no research on uLMS and hormones. I was basing my decision on the success of aromatase inhibitors with breast cancer. The dots were easy to connect. If estrogen blocking reduced estrogen-sensitive breast tumors, then perhaps estrogen blockers could reduce my estrogen-sensitive tumors, too. Following surgery, I took Arimidex for the next seven years.
With the abrupt loss of estrogen, I spiraled into a deep clinical depression. I thought “too depressed to get out of bed” was just a saying. But there I was stuck in my bed. It felt like I had weights on my arms and legs. Even taking a shower was huge accomplishment. I suffered for several months before calling my doctor for help. I worked with a psychiatrist for two years to get the right antidepressants and doses. I now take three different ones and have never felt better!
Over the next 17 years, three month scans became six month scans, then annual scans. Was it the aromatase inhibitor that was keeping me tumor free? I’d like to say that I believed I was cured…but I did not. I knew too many survivors who got a tumor after years of being NED. I was just waiting for it to return.
Sharon and Suzanne Kurtz 2005
Working not wishing for the cure.
Luckily, I found an outlet for my anxiety and fear. I felt strongly that our hope depended on LMS research. My online friend and fellow LMS patient Suzanne Kurtz and I traveled to sarcoma conferences and came back devastated that there was no research on LMS. Suzanne and I knew that if we were going to find treatments that worked, we had to raise money for more LMS research. Suzanne said, “If you really want something, you have to work, not wish, for it.” That became our motto: “Working, not wishing, for the cure.”
Suzanne got nonprofit tax status, and we launched LMSDR in 2006. It was originally named LMSarcoma Direct Research. We wanted every penny to go to research, and we wanted to help direct the research. In 2019, our foundation’s name was changed to Leiomyosarcoma Support & Direct Research to better reflect our outreach, advocacy, and support for patients and caregivers.
Sharon performing taiko drumming 2011
“Taiko drumming has provided exercise, mental strength and a community of friends.”
The other thing that kept me sane was Japanese taiko drumming, which I am still doing for the last 20 years. This rigorous and powerful drumming has provided exercise, mental strength, and a community of friends. It was impossible to feel depressed or sorry for myself while performing for an audience.
Five days a week, I’m a social worker in child protective services and foster care. I can’t believe I’ve lived long enough to worry about retirement. At home I am surrounded by three bunnies and a dog. The art on the walls is humbly painted or made by myself. I have a room dedicated to sewing (which I just learned a few years ago) and crafting. My two sons are now grown and married. I am impatiently waiting for grandchildren.
My advice for LMS patients is to be the decision maker of your treatment plan and always research your options. Just because one doctor runs out of ideas, doesn’t mean another won’t come up with something. Stay on top of the latest drugs in clinical trials. Be proactive by making calls and asking questions. Pass on information to others in the LMSDR Facebook group, and you will receive answers and priceless support in return.
Because of the patients and caregivers before you who have donated generously toward LMS research, our grim forecast is beginning to change. We have more treatments and options. We have more long term thrivers than when I was first diagnosed. But it’s not enough. We all must continue to support and advocate for LMS research until every patient is writing their own 20-year cancerversary story.
Note: If you wish to donate and pass the hope forward, go to LMSDR here.