New Patient? Take Some Advice from 3 Chemo Mentors
Get the inside scoop on everything from hair loss to early menopause from others who've been through cancer treatment.
"My support group helped me anticipate side effects and told
me about clinical trials." —Haralee W., 58, Portland, OR
Haralee W., who was diagnosed with breast cancer at 48, joined a support group just before her second chemo treatment began. "The women helped me anticipate side effects, such as joint stiffness," she recalls. "When I heard what other women were experiencing, I wasn't as scared." She also found their words comforting, since some of them were 15 or more years out of treatment.
Through her support group, Haralee also learned about clinical trials that were recruiting breast cancer patients. "I participated in six of them," she says. One was for a new chemo medication, and the others involved exercise, bone density, falls and vision. "My oncologist could have told me about the trials, but I didn't see him as often as I saw the women in my support group," she says.
The group played another key role for Haralee—as an unofficial focus group for her new business venture. When chemo threw her into menopause with drenching night sweats, she sewed a nightie out of wicking fabric meant for athletic wear. "I brought a couple of prototypes to my support group, and the women went wild with enthusiasm," says the owner of the company she named after herself, Haralee ("Cool Garments for Hot Women"). Two members modeled the sleepwear for a photo shoot. "They helped me so much," she says. "Now I want to help others."
"We talk about everything from funky rashes to how to tell our kids about cancer."
—Ginger J., 36, Salt Lake City, UT
Halloween 2006 was the scariest day of Ginger J.'s life. Five months' pregnant with her third child, she was diagnosed with breast cancer. Just as she was about to give birth to a new life, she was fighting for her own. She started chemotherapy six weeks after her son's birth.
After her first treatment, Ginger found a support group, the Salt Lake City-based Young Survivor Sisters, established for women like her—those who developed breast cancer in their 20s, 30s and 40s. "As a group, we talk about everything from funky rashes and early menopause to how to tell our children about cancer," she says. "When I talk about my treatment with my kids, I compare chemo to the Jedis and clone troopers in Star Wars. It helps them understand better."
The women in Ginger's support network were the ones who really prepared her for chemo. "I'd ask my doctor about some things I was experiencing, and he couldn't always tell me why," she says. "The women in my group would know the answer, though. They're the ones who know that when your hair falls out, your scalp is going to be painful to the touch. The support of other survivors always gives me peace and hope."
"Survivors reassured me that my hair would go back to normal."
—Crystal T., 43, Shreveport, LA
When Crystal T. learned she had breast cancer in 2007, she dreaded the thought of chemotherapy. "Everything I knew about it came from TV and movies," says the owner of a public relations firm. "People were extremely sick, hugging the toilet." Plus, Crystal couldn't bear the thought of losing her hair. "I thought I'd rather live a short life than have a long life with no hair," she says. "I couldn't imagine being bald." So when her doctor told her that some of her lymph nodes were positive and she'd need chemo, she was devastated.
Luckily, Crystal heard about the Sisters Network (sistersnetworkinc.org), a national support group for African-American women who have been diagnosed with breast cancer. Women in her local chapter told her the side effects wouldn't be as bad as she feared. "They reassured me that I wouldn't be nauseated or throwing up all the time," she says. "They told me which medications to ask for after my treatment. And they said I probably wouldn't lose my fingernails, but they would be brittle."
Group members also shared tips, such as to ask her doctor for a prescription mouth rinse if she developed mouth sores and to wear cotton gloves to bed if her hands got cold (a symptom of peripheral nerve damage, which can occur with some chemo drugs). "They also told me to eat a good breakfast the morning of chemo because you may not want to eat again that day," she says.
Crystal's hair worries disappeared when group members shared pictures post-chemo. "Seeing women who looked like me and had the same hair texture post-chemo reassured me that my hair would return to normal. Their support meant the world to me," she says. "Everyone needs a chemo mentor."
|Getting Ready for Chemo|
Starting Chemo: Preparing for Today's Visit