Thinking Outside the Box With a Rare Cancer

Rare cancers call for patients and doctors to think outside the box. When I was diagnosed in 2002, with a very rare cancer of the involuntary smooth muscles, leiomyosarcoma (LMS), there was little research and only one standard chemo approved for it.

My LMS started in my uterus, hidden as a common fibroid. Uterine fibroids grow with estrogen and will typically shrink with menopause. Of women receiving hysterectomies for troublesome fibroids, approximately one in 250 women will be diagnosed with LMS instead, according to research published in Gynecology & Obstetrics.

There was little do after surgery for my uterine LMS. I was offered the standard chemo but declined it. From what I read, there was only a mere 26% response rate. I also declined general pelvic radiation. The damage to healthy tissue was permanent and I did not find evidence that it extended survival for LMS.

As predicted, the LMS metastasized to my lungs, making me a stage 4 patient. At that point, I had the tumors surgically removed.

After reading about breast cancer and aromatase inhibitors, a light went on for me. If breast cancers are estrogen sensitive, then surely the uterus is estrogen sensitive too. I asked my oncologist to test my primary tumor tissue for estrogen receptors. He replied, “Sure. There’s nothing else I can do for you.”

The pathology report came back. My LMS tumor was 99% positive for both estrogen and progesterone receptors. This meant that estrogen was driving my cancer to grow. The hope was that an aromatase inhibitor (which only approved for breast cancers) would also block the estrogen my body made after menopause.

It worked! After taking the aromatase inhibitor for seven years, I have been tumor free for the last 19 years. I always urge patients to think outside the box, when they feel stuck for options.

Since the time I was diagnosed, 22 years ago, I have dedicated my life to advocating for research and educating patients with LMS and their loved ones, as the president of the Leiomyosarcoma Support & Direct Research Foundation (LMSDR). Thanks to LMSDR, we have accelerated research, leading to more trials and treatment options for LMS. You can learn more about leiomyosarcoma on LMSDR’s website at .

This post was written and submitted by a CURE reader. The article reflects the views the author and not of CURE®. This is also not supposed to be intended as medical advice.

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