Woman Founds Breast Cancer Organization from Waiting Room

Oct. 1, 2013— -- Rochelle Shoretz founded a national breast cancer support organization in the waiting room of her oncologist's office when she was 28 years old, armed with just a spiral notebook and the drive to give young women with cancer a network of their own.

That was 2001. Since then, her organization, Sharsheret, which is Hebrew for "chain," has grown to serve more than 20,000 women, families and health care professionals who have been touched by breast cancer in some way.

Four years ago, when Shoretz was diagnosed with breast cancer a second time, she went back to the Sharsheret not just as its executive director but as a patient seeking support.

"I started out as the first link in that chain. I was the person there for the next person down the pipe. "Shoretz, 41, said. " The chain has come full circle, so I get to draw on the chain myself."

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Before her cancer diagnosis, Shoretz completed a clerkship at the Supreme Court under Justice Ruth Bader Ginsburg, and had two children. Then, while changing into a bathing suit, she noticed that one of her breasts had an indentation.

"You have these life plans at 28 years old that you don't really consider will be altered by a major medical crisis at that age," Shoretz said.

So when she went to get it checked by a doctor, she parked at a metered spot, figuring the appointment wouldn't last more than an hour.

Six hours later, the doctor told her she had cancer.

"I was floored," Shoretz said. "I thought I was going to go back into practice and make partner in a big law firm."

Suddenly she was faced with quick decisions she never expected to make, such as whether to have a lumpectomy or a mastectomy. Her stepmother suggested genetic counseling so she would know whether she had a greater risk for developing more cancer, which could help her make that decision.

Once Shoretz learned that a breast cancer genetic mutation known as the BRCA mutation is 10 times more common in Ashkenazi Jewish women than everyone else, she decided to go to a counselor with her mother and sister and asked them to set aside a few hours for the appointment.

"I was feeling empowered in some way that were going to get to the bottom of this," Shoretz said.

But 15 minutes into the appointment, it was over. Shoretz knew that both of her grandparents died of cancer, but she couldn't go back any farther because so many of her family members died during World War II.

"I felt almost like there was a cloud fogging the clarity that I thought I was going to take away from that meeting," she said. "Instead there was just more mystery."

It's something she's seen women go through time and time again because they were afraid to ask about relatives killed in the Holocaust for fear of upsetting family members or because they weren't raised Jewish even though their genetics would later prove they were Ashkenazi.

Although BRCA genetic testing isn't recommended for women without certain family histories, Shoretz chose to get the test anyway for her own peace of mind, she said. Her results were negative, so she decided to undergo a less-radical surgery: a lumpectomy.

What she needed was a group of women her age to talk to -- not for medical advice, but for support and understanding. Could she have certain surgeries and still breast feed future children? It was a question most breast cancer patients getting chemotherapy alongside her couldn't answer because they were older than she was.

So she started jotting down ideas, and soon created Sharsheret.

"I remember Rochelle always very busy, with a lot of paperwork which she usually carried in a little trolley suitcase," Dr. Monica Fornieir, Shoretz's oncologist at Memorial Sloan Kettering Cancer Center, told ABCNews.com in an email. "It was of course impressive that she was able to do this while receiving therapy."

The Sharsheret "chain" has grown over the years beyond young Jewish women with breast cancer to include women, friends and caregivers of all backgrounds and ages. It even includes genetic mutations that lead to other cancers, like Lynch syndrome.

Read about a woman who used Sharsheret to help decide whether to take preventive action against Lynch syndrome.

When Shoretz's cancer returned, this time as stage IV breast cancer, for which there is no known cure, she underwent a double mastectomy and had other preventive surgeries, but she didn't have to make these decisions alone because she had Sharsheret, the support chain she created.

"I was a part of the founding but I also see firsthand and witness firsthand the tremendous role we play in enhancing quality of life in the thousands of women we serve," she said. "That has been very rewarding."

Information is our best weapon against breast cancer, so Go Pink with us. Throughout the month, we'll bring you the information you need to protect yourself and inspiring stories from breast cancer survivors – there are 2.8 million in the U.S. alone. Armed with the facts, you can take our pledge to know your risk and get the screening tests appropriate for you.