Leiomyosarcoma Long Term Thriver


Oct 28, 2019
Janesville, Wisconsin

I was given two months to live, thirteen years ago. It was Sept 2006. Two years prior, I started having symptoms but was misdiagnosed. I have no regrets about that misdiagnosis because I truly believe my story would have ended then with inappropriate treatment. 

In 2006, one month from age 50, a lung biopsy confirmed my diagnosis of stage 4 LMS, uterine origin, hormone sensitive. I was scheduled to start chemo but had a second opinion at the University of Wisconsin Carbone Cancer Center that saved my life. In the meantime, I saw a hypnotherapist who convinced me that I could survive this. I was started on Lupron injections and within one month my multiple masses started to shrink. I had almost no side effects from the Lupron and continued to do extremely well. My multiple tumors, none of which disappeared completely, remained stable. In July 2015, my insurance company decided that the very expensive Lupron injections only acted on estrogen produced by the ovaries therefore were no longer beneficial for a woman who was most likely post-menopausal. My oncologist agreed and also thought it was possible that menopause had /would keep the cancer at bay. 

A mass in my kidney started growing, albeit slowly, in 2016. In 2018, I started on Arimidex and after six months switched to letrozole, due to side effects. I stopped the letrozole in May of 2019 when a CT scan confirmed continued growth in a kidney mass and now also in my spleen. The side effects of the aromatase inhibitors were difficult, so I was happy to stop them when I learned they were not helping.

I have been on no treatment since May 2019. Surgery to remove my kidney and my spleen was recommended by a 2nd opinion doctor, but two surgical consults both felt the surgery was too risky for me. The next thought was Faslodex but there is concern that I would not be able to tolerate that either. Two weeks ago I saw a sarcoma specialist at MD Anderson. He believes my best course is to do nothing but monitor the growth. If and when it starts to become aggressive then surgically remove the aggressive tumors. 

In the meantime, I would like to see if there are other options for me. I have read Jane McLelland’s book, “How to Starve Cancer: Without Starving Yourself.” It’s about starving cancer using off label drugs. I also use some of Chris Wark’s protocols. He wrote the book, “Chris Beat Cancer: A Comprehensive Plan for Healing Naturally.” I am constantly researching, trying to find that magic bullet to save my life. Years ago I would search online for hours to find more info on LMS and others with it.  I soon stopped looking because I could not find, until last week, another woman – also a long-term survivor, with hormone sensitive LMS. She told me about the Leiomyosarcoma Support & Direct Research Facebook support group.

Finding this LMSDR group has really changed by perspective on my disease. I truly thought I was an anomaly and now I find out that there are many people who are long-term thrivers! Not only does this give me confidence, but arms me with up-to-date information and guidance on what steps to take if and when I need to.

Until my recent MD Anderson visit, I had not been seen at a sarcoma center. In fact, none of the multiple oncologists I have consulted over the years had seen a patient with my disease.  I am fortunate, however, to have a brilliant, local oncologist who listens to me and who referred me to MD Anderson and also to have had a second opinion with a wonderful oncologist at the University of Wisconsin Carbone Cancer Center. Having read about others on this Facebook group, I now realize how important it is to be seen by a sarcoma specialist.

Worst part of this long journey? Scan anxiety!

I feel so fortunate to have survived these past 15 years with stage 4 cancer. I’ve had no surgery, chemo or radiation. I have lived quite a normal life.  In addition to good doctors, to what do I attribute my long-term survival? First of all, I had a reason to live; I had teenage children. They needed me, my husband needed me, they were my priority and I promised them I would survive this cancer. I also met regularly with a hypnotherapist. He truly convinced me that I was in control of this disease. I changed my diet immediately upon diagnosis and continue with a plant –based diet to this date.  And most important of all, I am convinced that I have been and continue to be guided by a loving God. Lastly, I wake up every morning feeling very grateful to be alive!

DISCLAIMER: LMSDR does not promote these books.