(BOSTON) — For 25 years, Rick and Erica Kaitz were volunteers in the world of cancer research and fundraising, living a good life in Boston with their two daughters and spending five months a year in their second home in Hawaii.
That was until last June, when Erica, 52, was diagnosed with a rare form of uterine cancer — myxoid leiomysarcoma (LMS). Fewer than 150 patients in the United States have the disease, which is poorly understood and for which research is virtually unfunded.
“Our life was totally altered,” said Rick, 58 and an attorney.
The couple, married for 27 years, have two adult daughters.
“We were enjoying life, cutting back on work. The kids were out of the house and we were very much in touch,” he said.
Now, Rick is on family medical leave and is the main caregiver at home, driving back and forth to the Dana Farber Cancer Institute, and on a quest to find a cure to save his wife.
“I think what drives me is trying to figure out this cancer,” he told ABC News.
Since the early 1990s, the couple has ridden or volunteered with the Pan-Mass Challenge (PMC), which raises money for cancer research and treatment at Dana-Farber through an annual bike-a-thon that crosses the state. For much of that time, Erica has been on the PMC’s head staff.
In the last three decades, the organization has raised $375 million, more than any other single athletic fundraising event in the country.
And now, Rick has organized a PMC team of more than 100 runners and cyclists to raise $1.5 million for the foundation he created — the Erica Kaitz LMS Research NOW Fund at Dana-Farber — so that scientists can study these rare sarcomas.
Erica was diagnosed with what her doctors thought was a benign uterine fibroid. A partial hysterectomy revealed that it was a LMS, a cancer with no standard of care for treatment.
Sarcoma in general occurs in less than 1 percent of the population, said Dr. Suzanne George, a medical oncologist at Dana-Farber and Erica’s doctor.
“LMS is a sub-type of soft-tissue sarcoma,” she said. “It can originate in any part of the body, but the uterus is one of the more common locations of this uncommon cancer.”
About 85 percent of all women have uterine fibroids, according to George, and the chances of a suspected fibroid being this type of sarcoma are about 1 in 10,000.
“The challenge is that we don’t have any way of identifying which ones of those fibroids may later be identified as sarcoma,” she said.
Some doctors speculate that new non-invasive techniques for removing fibroids — more common now than surgery — can actually unleash these hidden and aggressive sarcomas.
“The challenge is, we need better tools to ID these rare tumors up front to see if we need to change management at the beginning,” George said of treatment for common fibroids.
LMS is so rare it is considered an “orphan disease” — one that so few patients have, that there is insufficient funding for research and treatment, and pharmaceutical companies have no incentive to create potential drugs because profits will be negligible.
But the Kaitz fundraising will enable the Dana-Farber research team, led by Dr. George Demetri, senior vice president for experimental therapeutics, to learn more in collaboration with other scientists from top universities.
Copyright 2013 ABC News Radio
Kevin Conlon, Euan McKirdy and Johanzynn Gatewood, CNN
Sam Penrod, KSL.com
Susan Scutti, CNN