Here At Hopkins

Breast Cancer Survivors Offering Hope to New Breast Cancer Patients

Later this year, the Johns Hopkins Breast Center will celebrate the third anniversary of its Survivor Volunteer program. Sixty-two women and 1 man, all of whom are breast cancer survivors, volunteer to make a difference in the lives of newly diagnosed patients at Johns Hopkins.

At the helm of the program is Lillie Shockney, RN, Education and Outreach Director of the Breast Center and a breast cancer survivor herself. "The Survivor Volunteers were all diagnosed and treated here at Hopkins and have expressed an interest in giving something back," says Shockney. The volunteers range in age from late 20s to almost 80. Patients can become volunteers one month after they have completed their own breast cancer treatment.

The Survivor Volunteers have many roles. Some provide one-on-one support for new breast cancer patients; some participate in fundraising and event planning; some have become breast health educators, spreading the message of breast cancer awareness in their communities. Some volunteers do it all. In addition, there are five women who function as Breast Center Volunteers, having been personally touched in some way by this disease through friends or family members. They, too, are involved in all aspects of the program, with the exception of one-on-one support.

Nicknamed Survivors Helping Survivors, one-on-one support is the cornerstone of the Survivor Volunteer program. Newly diagnosed patients are matched with a volunteer who had a similar diagnosis and underwent similar procedures. The volunteers are there to answer the patient's questions, talk about their own experiences, and help the patient prepare for the emotional and physical aspects of the diagnosis and treatment. Some volunteers have even shown new patients their surgical incisions. Shockney explains: "I tell our volunteers, if you are comfortable letting a woman see your incision, do it. It helps a patient a great deal seeing what she's about to embark on. Plus, she'll see that you're alive and fine. Even though we show the patient pictures, there's a big difference between that and literally looking at a woman's incision and being able to ask her questions about it."

"The volunteer stays connected with the patient as long as the patient wishes, which is usually all the way through the end of treatment--we could be looking at somewhere between 9 and 15 months," says Shockney. "I want our Survivor Volunteers to become an extension of the patient's family. And I want the patient to see the Survivor Volunteer as an extension of the Johns Hopkins Breast Center healthcare team."

There are Survivor Volunteers who come to the hospital on Thursdays when surgeries take place and others who are on site when patients are having their surgical consultations. One volunteer sits with patients during their radiation and chemotherapy treatments. "They're a symbol of hope for the patients," says Shockney.

Judy Matthews, a federal government employee and 15-year breast cancer survivor, has been a Survivor Volunteer since the program began. Judy can be found somewhere in the hospital every other Thursday, talking with patients before they have surgery and offering some comfort to their families while they wait during the surgery. "If [a patient] is really comfortable with me, I'll go with her and help her through the preoperative procedures," says Matthews. "But it can also be a very personal time. If you're sitting there with your breast in a mammogram machine, you may not want someone else in the room. And then I've had women who begged me to go with them--because I've been there and I know how it feels."

She's often the first person to see a patient when she comes out of surgery. "For a lot of women, when they're just waking up from the anesthesia, it can be the lowest time they have," says Matthews. "Even if you're telling them that the doctor thought everything went well and the prognosis is really good, it's just the time they want to cry." So Matthews is there to comfort them before they face their families. "I have so many good friends now from this program. It means more to them than I ever thought it would."

Survivor Volunteers are typically on hand to deliver a comfort bag of goodies to a patient after surgery, usually while the patient is still in the recovery room. Each comfort bag contains a number of items designed to make postoperative life a little easier for the woman--and help her retain her womanhood, which may have been threatened by the surgery. Shockney writes letters directly to companies asking them to donate items for the comfort bags. She also writes letters for Survivor Volunteers and Breast Center Volunteers, who take the letters to their local merchants. A typical comfort bag contains 15 or 20 donated items, such as bubble bath, potpourri, cosmetics, books, a Breast Center pink ribbon pin, and tea. As an example of the response she has received from some companies, Shockney offers the following: "I wrote to Bigelow Tea and asked them to send tea--and they did. A man came with palettes of tea! We were still giving away tea, over a year later." The Survivor Volunteers, with the financial support of the Johns Hopkins Women's Board, wrote and printed a book called Comfort Book - Nourishment for the Soul. It is a compilation of well wishes, advice, prayers, and humor from the Survivor Volunteer team. Recently, Sprint agreed to have 600 phone cards created just for the Breast Center comfort bags. And it's the Volunteer team that shows up and fills the bags each month.

Another role of Survivor Volunteers is called community ambassador. These volunteers are trained as breast health educators who go out into their community and attend health fairs, giving presentations about breast health. Fourteen of the Hopkins Survivor Volunteers have become certified as breast health educators.

And then there is the fundraising. The Hopkins Breast Center recently raised $30,000 at a fashion show/casino night, staffed entirely by Survivor Volunteers. "Without them, we could not have done the event," says Shockney. Fundraising efforts also extend to writing to congressmen and local legislators asking for more money devoted to breast cancer research.

Although not as extensive as the Hopkins program, the American Cancer Society has a Reach to Recovery program that matches newly diagnosed breast cancer patients with volunteers who have had similar experiences. To learn more about the program or how to become a volunteer, contact the American Cancer Society at 800-ACS-2345 or visit their Web site.

If you are a breast cancer survivor who would like to learn about opportunities at your own hospital, Shockney suggests speaking with your doctor about how you can contribute. If there is no Survivor Volunteer program in place, take heart: Shockney regularly travels around the country giving formal presentations to hospitals on how they can develop their own hospital-based Survivor Volunteer programs.


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