East Haddam Woman Speaks Out About Breast Cancer Study
CTSISTERSTUDY
New London Day
Margaret Stevenson
Boston University Washington News Service
November 9, 2006
WASHINGTON, Nov. 9 —Lyn May, a journalist from East Haddam who hosts a weekly television show on Long Island, interviews different people each week, but last year one guest’s message really hit home.
The guest, Carrissa Dixon, was there to speak about the Sister Study, a long-term project to study the health of sisters of women who have had breast cancer.
Dixon, recruitment coordinator for the study, said the study was looking to enroll a broader base of participants. May said Dixon mentioned needing more “women of color” and older women.
May, who is 66, African-American and the sister of a woman who has had breast cancer, realized she was exactly what the Sister Study was looking for.
“As we were doing the interview, I said, ‘Would you believe I am the perfect candidate?’ ” May said. “Then I said, on air, ‘I’ll join the study.’ ”
By analyzing the data of the currently cancer-free sisters of women who have had breast cancer, the study will seek to find the correlation, if any, of environmental factors and genetics to breast cancer.
Sixteen years ago, May’s only sibling and older sister, Carol Tyler, was diagnosed with breast cancer after being told for two years the lump she felt was only a cyst.
May said there were no previous cases of breast cancer in their family.
When May found out her sister was sick, she flew to Ohio, where the two grew up.
“It is ideal to have a sister to talk to,” Tyler said of May’s role during her illness. “So she could act like the grownup—and she did.”
Tyler said she demanded a biopsy on a Tuesday, went in for tests on the Wednesday and had a mastectomy on Thursday.
Tyler, who is now 72 and lives in Columbus, Ohio, has been cancer-free since her surgery. She said she was touched that her experience was so meaningful to her sister.
“She was there with me the night after I found out,” said Tyler, a retired health care administrator for the Red Cross. “It reminded us a lot of our mortality—I was in my mid-50’s.”
Tyler said being proactive about her personal health was what saved her life.
“Women need to be their own case managers,” she said. “My tumor was missed for a couple of years—you really have to listen to your body.”
May said medical help only goes so far and that it is really important to understand your own body and, in this case, to know your own breasts. She said valuing your intuition could help save your life.
“When it happens to one of us, it feels like it happens to all,” May said of the disease. “You feel powerless. You feel that you all have the cancer.”
Their family is not alone. Breast cancer is the most common cancer in women of any ethnicity, according to the Centers for Disease Control and Prevention. In 2003, the center reported, 181,646 women were newly diagnosed with the disease and 41,619 died from it.
Tyler said she thought the Sister Study was right in trying to find more women on a broader spectrum.
Dixon said being interviewed on May’s show and having May sign up for the study on air really helped get the word out about the study.
“We are really looking at how women’s genes are affected by the environment,” Dixon said.
The Sister Study is being conducted by the National Institute of Environmental Health Sciences, which is part of the National Institutes of Health.
The study’s goal is to find out the environmental and genetic factors that may lead to breast cancer.
The Sister Study has nearly 30,000 participants and hopes to reach 50,000 in the next year, according to the study’s Web site, www.sisterstudy.org.
“Black women are more likely to get breast cancer at a younger age, and it is more aggressive,” Dixon said.
To participate in the study, a woman must be 35 to 74 years old and be the sister of a woman who has or had breast cancer.
A participant has to fill out questionnaires and be interviewed by telephone. Later a nurse visits the participant at home and collects blood, a urine sample, a toenail clipping and some household dust. Participants are followed over a 10-year period.
“Most people are afraid to join a study,” May said. “I think they are afraid it will take too much time.”
May said collecting the data doesn’t take long and doesn’t hurt.
“It’s important that I take part in this because of my age and because of my race,” she said. “I am part of a population that has had a tougher time with the disease.”
May said she felt the Sister Study can make an important contribution to understanding the impact of the environment and who gets breast cancer and who doesn’t.
“We really want to encourage more women of color and older women,” Dixon said. “We want them to benefit—women from all walks of life.”
Tyler said, “I wish them good luck on this –I think race and medicine are far too superficially dealt with.”.
Dixon said May was a keynote speaker in June at a rally in New York City to publicize the Sister Study and to enroll more participants.
May said she found her presence at the rally in New York to be beneficial because she wanted to get the point across that the study was not anything to be fearful of and that it was not intrusive.
May said she felt her value at the rally was that she was able to tell potential participants, “It’s safe! Come join!”
“Lyn has been an awesome spokesperson since the day she decided to join,” Dixon said.
“That one-day trip to Long Island really paid off. She has really been an asset.”
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