Summer 2020 • Volume 21, Number 3 Serving those with breast and gynecologic cancers Two of the many survivors impacted by studies conducted in our region by the recipients of our 2020 research grants, Kathy Simpson (left) was diagnosed with triple negative breast cancer in 2013, while Nancy Gramkee-Cuer (right) has been living with metastatic breast cancer since 2017. For more information on our Research Initiative, see page 14. OUR EXECUTIVE DIRECTOR Just as cancer does not discriminate, an echo of performative activism. We the Breast Cancer Coalition recognizes pledge to listen more and talk less, the importance of a culture that to learn more and act accordingly, strives for diversity. We honor and to stand with these patients in individual differences whether color, demanding a more just world with race, religion, political viewpoints, better outcomes. socioeconomic status, physical abilities, gender, gender identity, We join the Greater Rochester Health and/or gender expression. We want Foundation and others in formally everyone who comes to the Coalition pledging our support for the Greater Rochester Black Agenda Group in their Holly Anderson for services to feel safe and accepted. May 19, 2020 DECLARATION: RACISM But everyone is not safe in our IS A PUBLIC HEALTH CRISIS. It's hard to watch what is happening community. Everyone is not accepted. in our city and around the country And we can no longer stay silent. and stand by silently as we try to find Black lives DO matter. Racism has long the right words to say in response to been a factor in the disparities we see what we are witnessing. And we can't in cancer diagnosis and treatment. We stand aside and say nothing hoping have long known that the mortality In this Issue... someone else will say it better. Racism rate for the Black, Brown, Indigenous, A Personal Journey . 3 is present in our community. Racism People of Color, and LGBTQ+ Advocacy Updates . 4 is a public health crisis and represents communities is measurably higher Living with Advanced Breast Cancer . 6 a longstanding paradigm of systemic than for White women. We have racism that cannot be ignored. We long known that racism destabilizes HER2: What's New? . 7 grieve for the family of George Floyd. public health and disproportionately Living with Gynecologic Cancer . 9 We grieve for the families of Breonna impacts those with cancer. These Program Offerings . 10 Taylor, Ahmaud Arbery, Freddie Gray, populations are more likely to be Program Update . .12 Laquan McDonald, Philando Castile, diagnosed at a later stage and less Healthy You . .13 likely to be offered clinical trials. "We must always take They are least likely to be referred Research Update . .14 for genetic counseling, least likely to Think Before You Pink . .15 sides. Neutrality helps complete their treatment, and least Breast Implant Recall Update . .15 the oppressor, never the likely to be referred for palliative care. Pink Ribbon Walk & Run Update . 16 These have been the patients with the Regional News . .18 victim. Silence encourages worst breast cancer outcomes. These the tormentor, never the inequities are unendurable. Though Friends Remembered . 23 we have done much within our Development Udpate . 24 tormented." mission to impact these outcomes, we A Prayer . 24 – Elie Wiesel can and MUST do more. Volunteer Spotlight . 25 O'Shae Terry, Michael Brown, Trayvon Although COVID-19 has forced us to PALS Update . 25 Martin, Tamir Rice, Tony McDade, temporarily close our doors to in- Outreach Update . 26 and the countless other Black people, person programs, our hearts remain Fundraising Friends . 26 named and unnamed, whose lives open to all affected by breast and Thank You Donors . .29 have been taken by the hands of gynecologic cancers, as well as their Wish List . 31 those who have sworn to serve family members and other loved ones. and protect. Our grief has turned As we strive to live the inclusivity Board of Directors & Staff . .31 to resolve; we must recognize ways of our mission, we will also strive to Cover photos: each year the Coalition we have been complicit and commit step off the sidelines of racism and highlights a handful of survivors through to becoming increasingly vigilant in professional photographs and sharing employ resources to address the real, their cancer journey in writing. Thank you seeking ways to eliminate racism, unmet needs that are occurring. We to photographers Jacque Freitas and Lisa particularly in healthcare. will not allow our words to become Gressins for donating their time and talent. 2 • Summer 2020 BreastCancerCoalition.org A PERSONAL JOURNEY: ALEXA’ LADUKE By Pat Battaglia EVERY DAY Two weeks after her fortieth birthday, Alexa’ LaDuke went for a mammogram, but not for the first time. A mammogram at age thirty- eight had been a precautionary measure for her after five years of infertility treatments. Her first breast imaging experience raised no alarms, and the time that followed passed quickly for this busy nurse and mother of two: five-year-old Kinsley, her daughter, and her three-year- old son, Kaiden. When her landmark birthday arrived, Alexa’ scheduled what was intended to be the first of many screening mammograms. But an area of concern was discovered in a place neither Alexa’ nor her doctors could palpate, and her morning appointment became a full day of additional screening procedures, culminating in a needle biopsy. Alexa' and her children Kaiden (left) and Kinsley (right). Friday, July 13th, 2018 is etched in Alexa’s memory. She remembers decisions to make in the next few days Alexa’ received a visit from two sitting on her deck looking at the than she ever thought possible. nursing friends, who noticed her blue sky, thinking, “Today is too color changing. Her temperature Acting quickly, Alexa’ consulted beautiful for anyone to learn they began to rise. Gerry called Alexa’s a number of breast surgeons and have cancer. It just can’t be.” Shortly cousins, Sue and Kurt, who came to plastic surgeons before selecting her afterward, her phone rang, bringing stay with the children. Mother and medical team. Three weeks after her the unwelcome news; she did indeed daughter headed to the emergency diagnosis, she underwent a bilateral have breast cancer. While attempting department, where Alexa’ was mastectomy - removal of both breasts to speak with the radiologist who admitted to the hospital. Gerry again - with reconstructive surgery using had performed her biopsy, Alexa’ remained in her daughter’s room, tissue harvested from her back. frantically took notes and strove this time for five days, while Alexa’ Alexa’s intended three-day hospital to keep her voice steady so as not received intravenous antibiotics stay was extended to six days to to alarm her children. Her mother, for an infection, an uncommon ensure her pain was controlled and Gerry Bergstrom, was with her. In a post-operative complication. The her blood work was in the normal five-minute conversation that turned antibiotics had the intended effect range. Her mother remained by her her family’s world upside down, the and cleared the infection completely. side the entire time. radiologist advised Alexa’ there would When Alexa’s surgical pathology be more medical appointments and Three days after she arrived home, Continued on page 22. BreastCancerCoalition.org Summer 2020 • 3 ADVOCACY CHAIR UPDATE By Kathy Guglielmi Kathy Guglielmi, Coalition Board Member, Advocacy Committee Chair In March 2020, New York State, along with most of the rest We are continuing our advocacy education by virtually of the country and world went on “pause”. Nonessential attending the annual Advocacy Summit sponsored by businesses closed and many of us worked, learned, and the National Breast Cancer Coalition. The Summit was sheltered at home. But cancer does not stop because to have taken place in Washington, D.C. in early May. of a pandemic and neither does cancer advocacy. We As of this writing, sessions have not begun, but planned advocates had to find new ways to continue our work. topics include an update on the Artemis Project, which is Like many others, we transitioned our monthly meetings research focused on the prevention of breast cancer and to Zoom. The meeting format seems to allow for greater the prevention of metastasis; advocacy in response to attendance – no commute time, no other commitments, COVID-19; breast cancer subtypes with a focus on invasive and a desire to be with our fellow advocates, albeit lobular disease; advocacy in a digital age; and many others. virtually. The Summit usually culminates in a day on Capitol Hill meeting with our elected officials. This year will entail 2020 is an election year, and we wanted to meet with virtual meetings with our representatives and their staffs. candidates for office. Again, we turned to Zoom. Our first Zoom candidate meeting was with Nate McMurray, Yes, things are different in a virtual world, but much candidate in the June 23 special election to fill the vacant remains the same. With the use of technology, the seat in New York’s 27th Congressional District. The meeting Advocacy Committee continues to meet our mission to allowed the committee an opportunity to introduce the advocate for and lend support to breast cancer relevant Coalition to Mr. McMurray and to hear his thoughts on bills and public policy. health care and other relevant topics. KNOW YOUR REPRESENTATIVES: New York State Senate New York State Assembly Senator George Borrello, NYS 57th Senate District Assemblyman Harry Bronson, NYS