Winter 2006–07
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Breast Cancer Coalition of Rochester Volume 8 Number 1 Winter 2007 1997–2007 Our 10th Anniversary! BCCR History — Part I, The Early Years This is the first of a four-part series about the history of BCCR, where it began, how it BCCR History . .Cover grew and where it is headed ... Executive Director Notes . 2 Our Mission & Info . 2 by Sylvia Cappellino, Founder, Breast Cancer Coalition of Rochester Why We Walk . 4 Time has gone so quickly and I have organization of the National Breast Advocate’s Spirit Award . 6 to pinch myself as a reality check Cancer Coalition. We collected the Reiki and Breast Cancer . 6 when I realize how far we have necessary $100 from the members Poetry . 8 come. The progress present so we could be- Physical Therapy News . 9 and growth over gin functioning. Advocacy News . 10 the last ten years First items of impor- Bowl for the Cure . 12 has been the result tance were getting a tele- Update & Save Date . 12 of hard and long phone listing and voice- Bowl for the Cure Info . 12 hours by many, mail, a post office box Survivor Speaks . 13 many people dedi- and a checking account. Nazareth Fundraising . .13 cated to eradicating Present at that meet- ARTrageous Thanks . 14 breast cancer and ing were: Judythe Roth, Our Programs . 16 helping those who Harriet Susskind Rosen- Program Coordinator . 18 have been affected blum, Maurine Johnson, Curves & BCCR . 18 by this disease. Marcia Gitelman, Linda Friends Remembered . 19 The grassroots Gottwald, Shirley Fal- Made with Love Afghan . 20 of the present day Sylvia Cappellino, Chair Emeritus, vo, Mary Jo D’Angelo, speaks at the 2006 ARTrageous A Winter Recipe . 20 movement go back Affair Carmella Richards, Janet Our Donors . 22 to 1993 when 2.6 Smith, Jackie Buck, and Events Calendar . 26 million signatures were collected na- Kathy Chiavoroli. At the August Merchandise . 27 tionwide to present to President and meeting officers were elected: Syl- Non-Profit Information . 28 Mrs. Clinton requesting $2.6 billion via Cappellino, Chairperson, Kathy New Banners! . 28 research dollars to be spent by the Chiavoroli, Vice Chair, Recording Errata . 28 year 2000 on breast cancer research. Secretary, Jackie Buck, Correspond- 1997 ing Secretary, Harriet Susskind On July 2, 1997 thirteen wom- Rosenblum and Shirley Falvo and en met at my home to organize the Judythe Roth as Treasurer. By the Breast Cancer Coalition of Roches- September meeting, we had designed ter (BCCR) and become a member brochures, posters and business cards, all made on my computer so continued on page 5 Volume 7 Number 4 Fall 2006 VOICES of the Ribbon The Newsletter of the Breast Cancer Coalition of Rochester Holly Anderson Our Mission is to make the eradication Every year in the United States, of the disease, it follows that 90-95% of breast cancer a priority through educa- over 192,000 women will hear the do not have it. As patient advocates, tion and advocacy, to empower women and men to fully participate in decisions relat- alarming words “you have breast some of us are becoming concerned ing to breast cancer, to provide support to cancer.” As someone who has about the recent push to “get test- those coping with a breast cancer diagnosis, heard these words firsthand, I know ed”. More and more, we are hearing and to promote and focus research into the that one of the perpetual questions causes, prevention, treatment and cure of of women referred for genetic breast cancer. in those first weeks following a new counseling and testing. In the ma- diagnosis is “why did this happen?” jority of instances, these referrals Board of Directors: Our brains work overtime. Worri- seem appropriate. Lately, however, some thoughts crowding our minds some of these referrals aren’t making President Holly Anderson during business meetings, in gro- sense, leading advocates across the Chair Joyce Wichie cery store check-out lines, on tread- country to question what might Past Chair Phyllis Connelly mills at the gym, and while lying in be happening. Vice Chair Lila Bluestone bed at night. Quiet moments of re- “Wouldn’t you feel better know- Treasurer Paula Martin flection are interrupted by thoughts ing one way or another?” is a com- Secretary Jennifer Haralambides like, “I didn’t exercise enough.” I mon refrain heard from friends and Advocacy Melisande Bianchi drank more than three glasses of family members. As a breast cancer Programs Pat Battaglia wine per week.” My diet could have Research Carol Mullin, Esq. survivor with children, I am inter- been better.” “I didn’t breast feed.” At Large Jean Lazeroff ested in discovering what may have At Large Tom McJury We can drive ourselves and our caused my breast cancer. What loved ones crazy with our specula- mother wouldn’t want to spare her Chair Emeritus Sylvia Cappellino tion. Somewhere in our own analy- children that legacy of fear? As a sis we may wonder about our genes. breast cancer advocate however, I We worry about our children, espe- have a responsibility to the constitu- Staff: cially our daughters. ency we serve to provide informa- Holly Anderson, Executive Director The National Cancer Institute es- tion that will help women make in- Holly Garver, Newsletter Editior timates that 5-10% of women newly formed decisions about their care. Barb Pifer, Office Manager diagnosed with breast cancer will To understand the issue more ful- Kathy Reilly, Programs Coordinator have a hereditary form of the dis- ly, one needs to have an understand- ease. Alterations in certain genes, Newsletter Coordinator: Pat Battaglia ing of risk. BRCA1 and BRCA2, are the genes sci- Technical Support: Alex Cheek According to the National Can- entists have discovered make a small cer Institute, the likelihood that population of women more suscep- breast and/or ovarian cancer is as- tible to breast and ovarian cancers. sociated with BRCA1 or BRCA2 is y y y y y y Scientists are attempting to identify highest in families with a history of genes that may help us understand multiple cases of breast cancer, cases Breast Cancer Coalition of Rochester genetic predisposition to other can- of both breast and ovarian cancer, 840 University Avenue cers. Isn’t this good news? one or more family members with Rochester, NY 14607 Maybe, but maybe not. In the two primary cancers, or an Ash- Office: 585-473-8177 case of breast cancer, if 5-10% of kenazi (Eastern European) Jewish Fax: 585-473-7689 those diagnosed have a genetic form background. It is important to keep Online at www.bccr.org Continued on next page 2 Executive Director, continued in mind that not every woman in such families carries The National Cancer Institute provides excellent in- an alteration in BRCA1 or BRCA2, and not every formation about BRCA1 and BRCA2 testing on their web- cancer in such families is linked to alterations in these site listed below. If you do not have access to the Inter- genes. Most importantly, even if net, please call the National it is discovered that one has the “As a breast cancer advocate, I have a Cancer Institute at 1-800-4- mutation, this does not mean one responsibility to the constituency we serve to CANCER for this informa- will actually get breast or ovarian provide information that will help women make tion, or call (585-473-8177) cancer. informed decisions about their care.” or write to us and we will There are numerous risks and mail you a copy of this in- benefits associated with genetic formation. testing (see Figure 1) and this column is not meant to We will be taking a closer look at the referral, counsel- encourage or discourage women from exploring these ing and testing processes in the next few months. risks and benefits with their care providers. That be- Stay tuned. 4 ing said, those living in the aftermath of a breast cancer diagnosis are particularly vulnerable, and potentially ex- Source ploitable, to suggestions that we “get tested”. http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA Figure 1 What are the risks and benefits associated with genetic testing, according to the National Cancer Institute? The direct medical risks of genetic testing are very small, but test results may have an impact on a person’s emotions, social relationships, finances, and medical choices. Benefits • Negative result: o a sense of relief o elimination of the need for special preventive checkups, tests, or surgeries • Positive result: o relief from uncertainty o allows people to make informed decisions about their future o provides information that allows people to take steps to reduce cancer risk, including prophylactic surgery Risks • Negative result: o “survivor guilt” caused by avoiding a disease that has affected a loved one o false reassurances that test results indicate no chance of developing cancer • Positive result: o feelings of anxiety, depression, or anger o may choose to undergo preventive measures that have serious long-term implications and whose effectiveness is uncertain o may impact personal choices, such as marriage and childbearing o may create issues surrounding privacy and confidentiality of results o potential exists for genetic discrimination Did you miss Dr. Langstein’s presentation in October - “New Techniques in Reconstruction”? Don’t worry... The entire presentation is on DVD and available in our Resource Library for you to view. Stop in and treat yourself to some very valuable information. Borrow a book while you’re there! 3 Think Before You Pink, sponsored by Breast Cancer Action, encourages consum- ers to ask questions about breast cancer fundraisers so that your money goes where you want it to go. Their website, www.thinkbeforeyoupink.org, has a “Parade of Pink” that lists the various fundraising campaigns and how much of your donation goes to the cause you support.