Rare cancer turns local resident into passionate advocate

Ellie Van Houtte/town crier
Los Altos resident Sarah Robinson, diagnosed with Stage 4 cancer two years ago, has organized a fundraiser to support Uterine Leiomyosarcoma research.

Sarah Robinson hopes to turn her medical battle into something positive for others.

The Los Altos resident, mother of two adult sons, has scheduled a fund- raiser for the LMSarcoma Direct Research Foundation 1-6 p.m. Sunday at Congregation Beth Am, 2670 Arastradero Road, Los Altos Hills.

Robinson, 54, told the Town Crier that the event is an extension of her advocacy on behalf of those afflicted with Uterine Leiomyosarcoma (ULMS), a rare tumor that develops in the muscular part of the uterus.

The Sarcoma Foundation of America (SFA) reports that approximately six out of 1 million U.S. women will be diagnosed annually with ULMS. Surgery is the primary therapy for those diagnosed with ULMS, which is resistant to chemotherapy, according to the SFA.

Grim diagnosis

Robinson’s efforts are the result of her own plight. Just shy of her 52nd birthday, she received a phone call that she had been diagnosed with Stage 4 cancer.

“It was the day before my birthday,” said Robinson, who until recently worked as an OB/GYN physician assistant. “It was kind of hard news to get over the phone.”

The “surprise diagnosis,” according to Robinson, came after she had undergone a laparoscopic hysterectomy, which included the use of a morcellator – a surgical tool that grinds up tissue with sharp rotating edges and extracts it from the body. Her doctors recommended the procedure after discovering that she had three uterine growths, one that enlarged from the size of an orange to a grapefruit within four weeks.

That large growth, originally diagnosed as a uterine fibroid, was a tumor. According to Robinson, the morcellator essentially “seeded” cancer cells throughout her body. Less than a year after the hysterectomy, Robinson said she now has three small growths on her lungs.

“It’s a very grim diagnosis. Just by doing (the morcellation) procedure, I’m now at Stage 4,” said Robinson, who declined to name the health-care provider who performed the surgery. “A lot of GYNs won’t see these throughout their entire careers –usually the average is zero to one (ULMS cases seen in a career).”

Robinson added that she asked – but was denied – the option of having a more traditional open surgery instead of the laparoscopy because her medical provider said she didn’t qualify for it.

“These types of things should be taken care of at a specialty center – at a sarcoma center,” said Robinson, who noted that 0.5 to 1 percent of women who undergo a hysterectomy due to a uterine fibroid end up with a ULMS diagnosis. “When you find a rare cancer, that’s where people should go.”

Looking ahead

Robinson conceded that while she’s still going through an “emotional process” in regard to her Stage 4 diagnosis, she’s also learned the importance of being her own health-care advocate. She found an entire community of those afflicted with ULMS through the Association of Cancer Online Resources (ACOR), where she met Sharon Anderson, originally diagnosed with the rare cancer in 2002.

A 55-year-old retired social worker, Anderson told the Town Crier that she knows Robinson’s story all too well. Although she also has been assessed at Stage 4 on the cancer scale, Anderson said she’s been tumor-free for seven years after she found a doctor through ACOR that treated her ULMS with a drug typically used by breast cancer patients. These days, Anderson advocates and offers a sympathetic ear to others afflicted with the disease.

“It’s extremely important to be your own advocate,” said Anderson, who often accompanies patients to medical appointments to help them understand their medical options and rights. “It’s not only for them, it’s for me, too. It’s my way of fighting for survival, too.”

Robinson said she doesn’t have time for what-if scenarios or negative thoughts. Instead, she chooses to focus her efforts on creating awareness and spreading knowledge of the rare disease to others. With this in mind, she noted that her advocacy work is “a continuation” of her 11-year career as a physician assistant.

“I love being a physician assistant and I love advocating for my patients,” said Robinson, who undergoes MRI exams and CT scans every three months to monitor the growths on her lungs. “It’s something that is very natural to me. It pains me to think that there are women who have to deal with this and, in some cases, also raise a family with little kids. That hurts. It hurts me a lot.”

Sunday’s fundraiser is one way Robinson hopes to make a difference. Guests attending the event – which includes a suggested $20 donation at the door – can enjoy food, wine and music while participating in a silent auction featuring certificates to restaurants, wine excursions and theater productions, among other packages.

“I’m trying to get out there and make a difference in this world,” she said. “I just don’t want this to happen to other women.”

For more information on Robinson’s fundraiser, call 245-1807.

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