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nEWS REPORT
 






 

 

The Survivor Volunteers


Reaching out to newly diagnosed patients are breast cancer survivors like Faye Hoffmeyer, left, and Judy Matthews, here in the recently remodeled Breast Center on JHOC 4. The new space brings together breast imaging, surgical oncology and patient education.

Faye Hoffmeyer used to describe herself as a “wife, mother, golfer, reader of books and enjoyer of life.” Now she can add “three-time survivor” to her list. Hoffmeyer found the first lump in her left breast in 1996. She had a lumpectomy, mastectomy and chemotherapy at Johns Hopkins. When the cancer metastasized to her breast bone three years later, she was back—this time for chemo and radiation. In 2003, after a mammogram turned up a tiny malignant tumor in her right breast, she returned for a mastectomy and bilateral reconstruction.

These days, Hoffmeyer is still connected with Hopkins Hospital, only now she is part of a group known as the Breast Cancer Survivor Volunteers. Formed in 1997 by Lillie Shockney, administrative director of the Avon Foundation Breast Center at Johns Hopkins, this group of 40 women supports newly diagnosed patients. The volunteers are matched with patients based on factors like age, stage of disease and type of treatment. They make contact by phone and give patients an idea of what to expect.

Some, like Hoffmeyer, also work regularly in the newly renovated imaging suite on JHOC 4, where they connect with patients who are undergoing procedures such as biopsies to diagnose suspicious lesions, or lumpectomies to remove malignancies. They wheel patients to and from pre-op and stay with them throughout the procedure, serving as a sort of complement to the technicians. “I’m there to be their best friend, their mother or sister, to hold hands, to talk about whatever they want,” says Hoffmeyer.

“The volunteers make it possible for us to give better care,” says Charrise Lomax, technical manager of breast imaging and intervention. If the techs appreciate the volunteers, so do the patients. In June, a 45-year-old university professor showed up for a lumpectomy accompanied by her elderly mother. In imaging, before the operation, a needle was inserted into her breast to localize the tumor, requiring her to remain in an awkward position. To help, volunteer Judy Matthews simply put a hand on the woman’s knee.

“Thank you for doing that,” the woman said. “I don’t know you, but I certainly wouldn’t want my mother in here.”

What does it take to be a survivor volunteer? “You have to be able to read people and say and do the right thing at the right time,” says Debby Stewart, volunteer coordinator and nurse educator at the Breast Center, herself a 26-year survivor. “You have to know how to establish relationships.”

Judy Matthews spends one day every other week in imaging—this on top of her job as executive officer for the U.S. Army Developmental Test Command at the Aberdeen Proving Ground, the unit that tests all weapons and equipment before they are sent to the battlefield. At the Breast Center, she is known as the lead volunteer, for she’s racked up thousands of volunteer hours and referred dozens, if not hundreds, of patients to Johns Hopkins as well.

When Matthews was treated for breast cancer at Johns Hopkins 21 years ago, she was left alone for an hour to wait in a basement hallway of Jefferson before a radiation consultation. She vowed she would do everything in her power to make sure that didn’t happen to other women during one of their loneliest and most vulnerable times.

Yet when Shockney established the volunteer program eight years ago, Matthews was reluctant to sign on. “I was not sure I was capable of providing the quality support newly diagnosed patients need. Now I know that all it takes is an understanding of how it feels to have been there before.”

The survivor volunteers participate in fund-raisers for national and local breast cancer organizations and for the Hopkins Breast Center. Some earn American Cancer Society certification so that they can be lobbyists, public speakers and breast health educators. The group has put together a training manual and beefed up their Web site with bios and photos. They attend an annual workshop, where they share “on-the-job” experiences and quarterly educational sessions where they learn about the latest treatments.

The volunteers don’t answer medical questions or give medical advice. It’s “having been there before” that makes them a valuable adjunct to the care team. A plastic surgeon, for example, can show patients photos of a reconstructed breast. Some volunteers can—and do—unbutton their blouses so patients can see what it looks like up close and in person.

Seven volunteers have not, in fact, survived but died from recurrences of their disease. Two more now are battling stage IV breast and ovarian cancer. And yet, they are still reaching out to others in similar straits. “Is there anyone you want me to call?” they’ll ask Shockney.

“To be willing to do this takes you beyond who you are,” says Stewart. Hoffmeyer agrees. “When all this began, my two girls had just left home for college,” she says.” I was trying to find a second thing. As odd as it sounds, I think that through my experience, I found myself. I really think I found my soul.”

Anne Bennett Swingle

The Breast Cancer Survivor Volunteer program is funded in part by the Avon Foundation. To read the survivor volunteers’ personal stories on the Web, go to www.hopkinsbreastcenter.org/about_us and click on “Our Team.”

 

 

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