Rowing is good exercise for cancer survivors. Above, members of the Brockport Breast Cancer Support Group work out during a class with Fairport Crew. Submitted photo.

Dressed to play their roles as warriors, members of the Brockport support group prepare to paddle their canoe out into the night. During a weekend camping experience at Camp Good Days and Special Times, participants were encouraged to address their fears and overcome them. Submitted photo.

Breast cancer survivors volunteer to help others

"Getting cancer is not a death sentence," said Grace Gallivan, a breast cancer survivor. This is a message that she and other members of the Brockport Breast Cancer Support Group want to deliver to anyone fighting a battle with cancer.The Brockport Breast Cancer Support Group is made up of 25 members who, along with Marcia Ullman, a psychiatric/mental health nurse and clinical specialist, meet monthly to provide, "Comfort, care and education," said Anne Klein, a breast cancer survivor and group coordinator. Open to anyone who is newly diagnosed, currently undergoing treatment or who is a breast cancer survivor, the group meets at the Family Wellness Center at Lakeside Memorial Hospital in Brockport. All the members are breast cancer survivors who live in the areas of Monroe, Orleans and Genesee counties.

This year, the group celebrates six years of being together. Brockport resident Irma Pylyshenko is described by Klein as "One of the founding mothers of the group."

Pylyshenko was attending a breast cancer survivor support group at Highland Hospital. Ullman was helping to facilitate this group when she was approached by Pylyshenko, who asked for her help in starting a group in the Brockport area. "I had a mastectomy in 1999 and was driving to Highland Hospital for a support group. I was thinking about other women who were going through treatment and might not be able to drive," Pylyshenko explained. "I thought a nurse would be great to have as part of the group and so I asked Marcia Ullman for her professional help," she said. And so, with the help of other breast cancer survivors who lived in the Brockport area, the Brockport Breast Cancer Support Group was born.

Over the last six years, Pylyshenko has seen changes with this group. "A number of us have been together since the beginning. Some come every month and some people come only once. We keep the group going so there is always someone to turn to for help. We lead by example and give comfort," she said. These members come to monthly meetings for many reasons. Gallivan gives her reason as, "giving encouragement." She also describes each person's battle with breast cancer as "unique, but what we individually share speaks to existence. We are still here," said Gallivan.

She also hopes that other women can realize the important role support groups play in helping a woman recover from breast cancer. "No matter the eventual outcome, we are all survivors and we do one day at a time. Each day is a new beginning to deal with as we choose - mentally, emotionally and physically. We do it alone and we do it together," Gallivan said.

Klein describes her role as an advocate. "I may not need a group but someone in the group might need me," she said.

Hamlin resident Roxanne Zambito is a breast cancer survivor and she comes to the meetings because, "We all talk and learn from listening to each other and I learned that I am not by myself," she said. "It's wonderful."

Ullman, the only non-cancer survivor in this group, describes her role in the group as helping to facilitate and educate. "We provide information in the way of education and everyone shares their own story which expresses their own hope. We give tips on how to deal with chemotherapy and radiation. And sometimes, we just sit and listen if a member needs a place to express their feelings. Every activity is a way to rehabilitate and help our members," Ullman said. Beyond the monthly support meetings, group members are also involved in a variety of activities. Some participants recently formed a rowing team and take classes at Fairport Crew. "This is a non-strenuous water sport and is great exercise for breast cancer survivors," said Klein. She, along with other members, help to coordinate the American Cancer Society's Look Good … Feel Better program. This free program gives women who are fighting cancer beauty tips and also educates women how to reduce the physical side effects of cancer treatments. Patients are paired with licensed cosmetologists who also teach them how to deal with hair loss and skin changes.

Other support group activities include exercise classes and guest speakers at meetings, weekend trips, crafting arm pillows for breast cancer patients at Highland Hospital, fundraising activities like the Making Strides Against Breast Cancer Walk, as well as advocating for funding for cancer research.

Making changes
Two members of this group are ambassadors for the American Cancer Society and recently went to Washington, D.C. to lobby Congress for more money for breast cancer research. Kathy Williams is one of those women. She was diagnosed with breast cancer on April 4, 2000 and six months later was diagnosed with cervical cancer. She advocates for breast cancer awareness because she wants people to know how wide-spread cancer is. "As a survivor, I feel like I need to do something. I have a drive in me to do something to cure this disease. And one way is to get in front of the lawmakers who make the decisions for funding. This year, 565,000 people in the United State (US) will die from cancer and 35,600 of these people will be from New York state," she said. As an activist for breast cancer, it is Williams' hope that more funding is dedicated to breast cancer awareness. "Currently, our government only funds mammograms for one in every five women who are either underinsured or who have no insurance. This needs to change," she said.

A new outlook on life
The group recently had a chance to try out their new rowing skills during an overnight camping trip at Camp Good Days and Special Times. As part of their commitment to helping people of all ages battling cancer, Camp Good Days offers a Women's Oncology Program. During this weekend camping experience, the women came together to explore arts and crafts, outdoor adventures such as hiking, canoeing, rowing as well as other activities like massage and yoga. Klein describes this weekend as "Incredible. Camp Good Days and Special Times has a slogan: ' 'Courage knows no boundaries' and during our weekend we took any fear we had and learned how to overcome it," she said.

Zambito recalls the most memorable part of the weekend. "We were all in our cabins, tucked into bed asleep and we heard this yell, like an Indian warrior. We ran out of the cabins and followed the sounds down to the dock where we saw some of the women dressed in Indian headdresses. They told us we were going on a midnight canoe ride and off we rode into the night in the canoes. It was awesome!," she exclaimed.

While dealing with their illnesses and treatment can be an emotional roller coaster, the women from the Brockport Breast Cancer Support Group agree that dealing with their illnesses have given them a new outlook on life. Klein said, "The sky is blue and autumn is more brilliant and brighter." Gallivan concurs, "Out of a scary diagnosis, comes an enjoyment of life."

"This is a sorority I did not want to join but I am so glad that I am here," Zambito said.

For more information on the Brockport Breast Cancer Support Group, contact 585-395-6044. The next meeting is Thursday, November 2; 7:30 to 9:30 p.m. at the Family Wellness Center, Lakeside Memorial Hospital, 156 West Avenue, Brockport.

October is Breast Cancer Awareness Month
October is Breast Cancer Awareness Month and Anne Klein, a breast cancer survivor, wants people to know that "every three minutes a woman is diagnosed with breast cancer and Monroe County has one of the highest rates of breast cancer in New York state."

A map available from the New York State Health Department shows Monroe, Genesee, Chautauqua and Hamilton counties have the highest number of people with breast cancer. Hamilton County is located in the northern part of New York, and this county has the highest number of incidences of breast cancer in New York state.

This news is sobering, and Klein wants people to know that, "Breast cancer has a 98 percent survival rate after five years. But the mortality rate is 30-50 percent after 20 years," she said. That is why Klein believes in the power of support groups. "Statistics show a better survival rate among those who participate in support groups. The experience of being a survivor can be overwhelming and a group allows us to connect with others who understand and can give solid, practical ideas as well as how others cope with treatment and anxieties."

Dr. John Risolo agrees wholeheartedly with Klein.

Dr. Risolo is a general surgeon, and his practice is located at Lakeside Memorial Hospital in Brockport. "When I see a patient who has been diagnosed with breast cancer and she comes to see me and sits by herself she has a much more difficult time coping with her diagnosis. I see a dramatic difference in how someone copes psychologically with this disease when they do have support," Dr. Risolo explained. "So many women will tell me they do not want to bother their friends or family with the news of their diagnosis. I tell them to call their family and friends today and share their news. You let them take care of you," he said.

Support can come in many ways. Education and advocacy are important for any person dealing with cancer. Breast cancer survivor Grace Gallivan recommends that anyone who is diagnosed with cancer should talk to their doctor about treatment options. "I was lucky, my cancer was caught in its early stages but I also asked questions and advocated for myself. People need to be comfortable with the decisions they make regarding treatment," she explained.

There are many sources available for information about breast cancer, specific types of breast cancer and how to cope with a diagnosis. Many books and Internet sources provide tips on how to cope with breast cancer. Author Peter van Dernoot, recently published a book, Helping Your Children Cope with Your Cancer: A Guide for Parents and Families. In this book, he gives advice on how to tell family and friends about a diagnosis and how family and friends can play an important role in the recovery process.

The American Cancer Society, Camp Good Days and Special Times, the Breast Cancer Coalition of Rochester, and the Brockport Breast Cancer Support Group, are just a few of the groups available locally which provide help. Area hospitals, Strong Memorial, Highland, Park Ridge, Rochester General and Lakeside Memorial, also have educational programs and services for anyone in need.

October 22, 2006