Rowing a war canoe to the center of Keuka Lake and letting out a war-whoop. A bucket-list trip to Ireland. Traveling back roads to find quilt block-emblazoned barns. Eating ice cream at sunset. Dancing. Laughing. The members of the Brockport Breast Cancer Plus Other Women’s Cancers Support Group know how to live.
“Sometimes we say ‘cancer is the best thing that happened to me’ – I learned to live, with cancer,” says Anne Klein of Hamlin, a twelve year survivor of breast cancer.
The support group was founded in the late 1990s by a Brockport breast cancer survivor who wanted to establish a west side group. Klein has since taken a lead role, with a mission to educate and support women with all types of cancer diagnoses, while enjoying life.
A group of about 20 women survivors of cancer travel to Brockport for monthly meetings from all parts west of Rochester, including Albion, Bergen, Chili, Clarkson, Gates, Greece, Hamlin, Hilton, Kendall, Leroy, Parma and Spencerport.
“We’re a small group. We don’t have a model we follow and we don’t sit around and talk about how bad we have it. We incorporate a lot of different activities,” says Klein, adding that they do discuss diagnosis and coping whenever the need arises.
A common response that Klein says she hears from women recently diagnosed with cancer is that they don’t need a support group.
“They say ‘I have my own support, I have my family’ – that is not the same type of support. You need the emotional support of someone who has been through it. We can offer vital information and tips, such as what to eat or not eat, how to cope with chemo, signs to watch for, if you need a wig, if you need a ride to chemo, help with housecleaning – we can connect you with people who can help. No woman has to go through cancer alone,” says Klein.
The Brockport support group meets for social dinners and also attends fundraising events together. Crafting activities include making “colors of cancer” beaded bracelets that they sell to raise awareness, with the proceeds going into more supplies to raise more awareness. They also attend Camp Good Days and Special Times through the camp’s Women’s Oncology Program for a weekend of fun and relaxation.
Klein laughs over camp memories, saying “Anyone in the group will tell you that’s where we learn how to live and have fun again!”
“So you got cancer. What are you going to do about it? You’re going to get through it the best way you can – and there’s help out there.” That help, says Klein, includes all the activities that the Brockport support group participates in and organizes, plus education.
“It’s something we are so particular about. Everyone who comes to our meetings will go out and tell someone else what they’ve learned,” says Klein, about having an educational speaker at group meetings.
Past speakers include local doctors, yoga instructors, health insurance representatives, and resources through the American Cancer Society. A funeral director talked about preplanning, choosing flowers, and receptions. “We had a good time with that,” Klein says with a laugh, “– it’s not as morbid as you think!”
The group’s October meeting, in observance of International Breast Cancer Awareness Month, featured Jessica M. Salamone, ScM, CGC, a certified genetic counselor from Elizabeth Wende Breast Care.
Salamone’s presentation about BRCA I and II genetic testing was both a science lesson and a practical explanation of hereditary cancers, and whether genetic counseling is recommended for people with or without a cancer diagnosis. BRCA I and II are genes that when mutated cause up to an 87 percent chance of breast cancer and a 45 percent chance of ovarian cancer. They are the gene mutations now known as the reason for Anjolina Jolie’s recent decision to undergo a preventive double-mastectomy.
“Most of my work is telling people good news,” Salamone said of genetic counseling. However, she stressed to the group the need for them to consider and investigate family history – including health history of male relatives as gene mutations of BRCA I and II also increase risk for prostate cancer, as well as melanoma, pancreatic and renal cancers in men and women.
Group member Linda Torok of Clarkson, a 13 year survivor of breast cancer, said she had an upcoming genetic counseling appointment. Torok was initially doubtful about the usefulness of getting tested, since she has all sons and grandsons. After hearing that the gene mutation can be passed to future female descendants, and how the genetic mutation causes heightened cancer risks for men, she said, “Now I’m convinced.”
Klein credits the support group’s success to collective learning and living, saying, “We can heal together, in different ways that doctors can’t heal us.”
The Brockport Breast Cancer Plus Other Women’s Cancers Support Group meets the first Thursday of the month at Emeritus at the Landing, 90 West Avenue, Brockport, 7 to 8:30 p.m. (fully accessible). Check monthly community calendar listings, or call Anne Klein at 585-964-3415.
Photo by Terra Osterling
10/20/13
