#knyc

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Ciao Bella Chiara. Vai con Dio amica mio.

Chance meeting with Chiara at the airport this past March... Both on our way to different breast cancer conferences! ---

Dear Friends, 

Our hearts are broken. The fierce, funny, fabulous Chiara D’Agostino passed away yesterday, at 1:50pm from metastatic breast cancer. Her niece, Jessica, let Chiara’s vast network know that Chiara was surrounded by her family and was at peace, her brother-in-law reading to her from Psalms.

Chiara trusted God and her faith bolstered her during difficult treatments and bad news. Reciting the rosary brought her peace.

Chiara was a fierce advocate for herself and other TNMBC breast cancer patients, acutely aware that her disease had dealt her a bad hand with limited treatments. She also fought against standard notions of beauty. Chiara often modeled and was photographed bare-chested to emphasize that scars and all and eschewing reconstruction and choosing to go flat are also beautiful.

We were so hopeful when her amazing care team at NYP was able to access Sacituzumab govitecan for her, but it gave her only a few short months before she had further progression to leptomeningeal metastasis. Despite her increasingly grim diagnosis, and difficult treatments, Chiara stayed in touch with her far-flung friends and traveled as much as she could to attend conferences. She was dedicated to educating herself and the public and she fought for more funding for research so that one-day, science would no longer fail other patients. 

Tomorrow is guaranteed to no one, but MBC makes future tomorrows far less certain. Chiara knew her time on earth would be shortened, but she had hoped for more time to crochet with her sister, play with her beloved kitties, chit-chat in Italian and more time to fight for more and better treatments; we will fight on for you. Vai in pace.

Ciao Bella Chiara. Vai con Dio amica mio.

Per sempre nei nostri cuori.

[susangkomengreaternyc]

Susan G. Komen® Updates Breast Cancer Screening Guidance As Communities Begin To Re-open

“There is no reason to further delay getting routine mammograms”

Susan G. Komen®, the world’s leading nonprofit breast cancer organization, today updated its recommendations regarding routine breast cancer screening as communities across the country begin to re-open. Komen now urges everyone to take care of their health by scheduling routine screenings and preventive care and getting any worrisome symptoms checked out. For women who feel well and are due for a screening mammogram (and the center is open), they should do so. Women who were due for screening mammograms this past spring and have not gotten it yet should call their doctors about making an appointment.

“We want to reassure you, it’s OK to see your doctor, even during the continued COVID-19 crisis,” said Komen’s Chief Scientific Advisor Dr. George Sledge, Jr., who is a medical oncologist and Professor of Medicine and Chief of the Division of Oncology in the Department of Medicine at Stanford University. “We don’t want women to stop getting mammograms and there is no reason to further delay. Hospitals and cancer centers know how to appropriately mitigate the risk of infection and are among the safest places to go in society in that regard. We absolutely do not want to see an increase in the number of advanced breast cancers because of delayed screening. We don’t want to lose the gains we’ve made in treating breast cancer.”

This new recommendation updates guidance Komen previously issued on March 18, 2020, during the early stages of the pandemic in the U.S. At that time the organization suggested non-symptomatic (no sign of breast cancer) women delay routine breast cancer screening to reduce the risk of COVID-19 infection and allow health care workers to focus on managing the pandemic. However, Komen noted that diagnostic imaging for people who were displaying warning signs for breast cancer and other essential health care services should not be delayed.

In announcing the updated recommendations, Komen noted that health care leaders now have a better understanding of the situation and the capacity of health care systems in communities across the country, as well as how to minimize exposure to COVID-19. Hospitals and doctors’ offices have instituted new policies and are taking many precautions to reduce risk of COVID-19 infection. Hospitals and outpatient facilities such as mammography centers routinely clean equipment between patients. Health care workers and patients are expected to wear masks and have their temperatures checked. Additional steps are being taken to allow for social distancing, too. For example, appointments may be spread out throughout the day so fewer people are in the waiting room at the same time. Or, people may be asked to wait in their cars until they are called for their appointments. If you are worried about going to the center, talk to your doctor about your concerns.

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Achieving health equity, ensuring that where you live and the color of your skin does not determine whether you live is the driving purpose of Komen NYC’s work. George Floyd’s murder by police and the ensuing rawness of outrage, protests, and calls for justice, equality, and change have laid bare how much more work needs to be done. Health equity requires social equity. There is no doubt systemic racism is a driving force in the disparities in breast cancer care and outcomes that people of color face. As a community, we must listen to voices with different perspectives, be willing to learn, grow, and change and be agents of peace and progress. Let’s accept that racism is a public health crisis and work to dismantle all vestiges of it. Black lives matter. We wish you peace, Team Komen NYC

[susangkomengreaternyc]

The Sex and Breast Cancer Virtual Conference Wrap Up

Our no-holds-barred virtual conference on women's sexual health and breast cancer was this last weekend and we can't be more proud of this seminal moment for the breast cancer community.

Sexual health matters to overall well being. Regardless of where a woman finds themselves in their breast cancer journey, surgeries and treatments can take a toll on her sex life and sexual functioning. Over a day and a half, fifteen phenomenal women discussed fourteen aspects of the sexual health of women with breast cancer.

Enjoy the resources and recordings from the conference collected below!

Don’t forget to check out the conference program for faculty biographies and special attendee discounts. Plus, be sure to see our special conference resource guide! For those who were able to attend the conference, please complete our conference survey to guide our planning of future events.

DAY ONE - Morning

Keynote: Positive Sexuality. Owning Your Personal Journey Towards Sexual Fulfillment Sid Azmi, BS, RTT

Email: [email protected]

Website: www.pleasenewyork.com

Watch the Presentation

Check back for the Slides 

See Me! Hear Me! Help Me! The Invisibility of Female Patients Somi Javaid, MD

Instagram:  @hermdhealth

Facebook:  HerMDHealth

website: www.hermdhealth.com

Watch the Presentation

Check back for the Slides

I Kinda Want To, But It’s So Painful (lubricants, hormones, etc.) Kristin E. Rojas, MD

Instagram: @kristinrojasmd

Watch the Presentation

Check back for the Slides

Ugh... Things Just Don’t Seem Right Down There: The Role of Pelvic Floor Physical Therapy Amy Stein, PT, DPT, BCB-PMD, IF

Instagram:  @beyondbasicspt

Facebook: beyondbasicspt

Twitter:  @beyondbasicspt

Website: www.beyondbasicsphysicaltherapy.com

Watch the Presentation

Check back for the Slides

What Else Can I Do to Feel Better? Adding Alternative Therapies Mindy Pickard, MS, LAc

Contact info: www.mindypickard.com

Watch the Presentation

Check back for the Slides

DAY ONE - Afternoon

Special Guest Appearance Nancy Brinker, Founder, Susan G. Komen

Hear from Nancy

Bringing the Libido Back, the All-Natural Way - From Nutrition to Lifestyle Elizabeth Poynor, MD, PhD

Instagram: @poynorhealth

Email:  [email protected]

Watch the Presentation

Check back for the Slides

I’m Not In The Mood. Discussing Responsive Desire and Mindfulness Sari Cooper, LCSW-R, CST

Instagram: @saricoopersexesteem

Facebook: centerforloveandsex

Watch the Presentation

Check back for the Slides

Thinking Outside the Sex Box - Exploring New Ways of Sex Play Sid Azmi, BS, RTT

Email: [email protected]

Website: www.pleasenewyork.com

Watch the Presentation

Check back for the Slides

Technology in the bedroom? YES!! Apps Which Improve Sexual Health Lyndsey Harper, MD, FACOG, IF

Instagram: @lyndseyharpermd and @meetrosy

Website: www.meetrosy.com/cancer-sexual-concerns/

Watch the Presentation

Check back for the Slides

DAY TWO - Afternoon

Let’s Talk Pornography Alessandra Tantawi, LMSW, MS Ed

Instagram: @alessandratantawi

Watch the Presentation

Check back for the Slides

I Am, I Can, I Came! Bringing Acceptance and Humor Into the Bedroom Kelli Davis, Patient Advocate

Instagram: @kelli4mbc

Facebook: Smellimd

Watch the Presentation

Check back for the Slides

Love, Kindness, and Communication Matters Alessandra Tantawi, LMSW, MS Ed

Instagram: @alessandratantawi

Watch the Presentation

Check back for the Slides

Let’s Get Real - A patient panel moderated by Gerri Willis and featuring Kelli Davis, Michelle Perez, Nancy Molesworth, Therese Curry, and Dr. Bridget Glazarov

Watch the Conversation

___________________________________

Thank you to all the sponsors who helped make this conference possible!

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Our Hearts Are Broken

To the breast cancer community, 

Our hearts are broken. The inimitable Emily Garnett passed away on Sunday from metastatic breast cancer. Her husband, Christian, had let her vast community know in a blog post that the end was near and that Emily was pain-free and surrounded by family.

To say that Emily was a force of nature would be a disservice to her joyful nature, acute intellect and take no prisoners personality. Despite her increasingly grim diagnosis, and difficult treatments, Emily freely gave of herself so that other women might have a chance at living longer. It was her mission to educate the public and she advocated elegantly but ferociously for more funding for research so that one-day, science would no longer fail other patients. 

Emily lived her life with grace but never failed to call out people and organizations for their shortcomings. Emily was the keynote at the Komen NYC Westchester MBC Conference this past November while undergoing difficult proton therapy to combat leptomeningeal metastasis. Emily brought the room to tears and cheers with her raw eloquence, insights, and passion. Emily did not believe in whitewashing.

Tomorrow is guaranteed to no one, but MBC makes future tomorrows far less certain. Emily knew her time on earth would be shortened, but she fought every day for her husband, Christian, and son, Felix. We will remember your fierce love for your community and the fierceness with which you fought for them. 

Godspeed Emily, Forever in our hearts.

[susangkomengreaternyc]

Addressing Food Insecurity During COVID-19

During this difficult time we understand that many members of our community are overwhelmed with health concerns, child-care, working from home, and food insecurity. To help reduce some of the stress you may be experiencing right now, here is a list of resources available in the New York City area to ensure that our community members have access to nutritious meals and foods during COVID-19 and New York State’s P.A.U.S.E. These organizations are dedicated to providing access to healthy foods and nutrition especially during a crisis.

*If you feel sick, or are worried about possible exposure to COVID-19, we recommend contacting a family member, friend, or neighbor to retrieve the items on your behalf and leave the supplies at your door, if delivery services are unavailable (deliveries labeled below). Be sure to wash your hands for at least 20 seconds after touching anything from outside and wipe down any surface the packaging may have come in contact with using a surface disinfectant.*

God’s Love We Deliver - DELIVERY - Provides medically tailored meals to those with chronic illnesses, including client’s children. Currently, they are delivering to all clients with a new delivery protocol. Drivers will knock on each client’s door, place the meal bag at the doorstep, step back six feet, and wait until the client opens the door to leave. Additionally, they are accepting volunteers, and very much appreciate any support. Visit the Volunteer page on their website to sign-up for a shift.

Department for the Aging - DELIVERY - Offers in-home services such as home delivered meals for seniors age 60 and older. Review their list of organizations throughout NYC that provide meal deliveries to find one near you. 

Meals on Wheels America - DELIVERY - Meals on Wheels provides meal delivery to seniors across the country. Find a provider near you. 

Free School Meals in NYC - With the recent closure of all NYC schools, the NYC Department of Education is committed to providing three free meals for all school aged children in NYC. Find free meal locations near you.

Food Bank For New York City - Food Bank is committed to providing New Yorkers in need with access to meals during the crisis. Locate a soup kitchen or food pantry near you. Please call ahead to confirm services and hours.

Food Help NYC - This interactive map can help you find food pantries and community kitchens throughout New York City. Please call ahead to confirm services and hours. For urgent food and hunger needs, call the Emergency Food Hotline at 866-888-8777 or 311. 

Hunger Free America - Check out these educational guides for all five New York City Boroughs. Each guide has information on free food access services and maps highlighting where to go.

Visit ACCESS HRA - To sign up for SNAP/Food Stamps.

Komen NYC is the pink ribbon connecting the breast cancer community. Your donations will support our efforts to reduce disparities in access to care. Please consider donating to Komen Greater NYC in support of all of our community partners who serve women, men, and families who may be struggling with the compound issues of breast cancer, COVID-19, and food insecurity.

[susangkomengreaternyc]

Non-Symptomatic Women Should Consider Delaying Routine Screening this Spring

SUSAN G. KOMEN SUGGESTS NON-SYMPTOMATIC WOMEN DELAY ROUTINE BREAST CANCER SCREENING THIS SPRING

Response minimizes exposure, frees up needed health capacity to deal with COVID-19

DALLAS – March 18, 2020 – Susan G. Komen, the world’s leading nonprofit breast cancer organization, today suggested healthy women of average risk delay routine breast cancer screening until later this year.  The organization stressed that people who are displaying warning signs for breast cancer should contact their health provider to determine their need for diagnostic imaging.  Komen made the recommendation to minimize exposure to and potential spreading of COVID-19 and to help support the health care system’s need to focus scarce health care capacity and resources on managing the pandemic and those most in need of support.

“As our health care system across the country begins to feel the strain from dealing with COVID-19, we all share a responsibility to help stem the spread and to support our health care providers as they focus on those most in need of care,” said Komen’s Chief Scientific Advisor, Dr. George Sledge, Jr. M.D., Professor of Medicine, and Chief of the Division of Oncology in the Department of Medicine at Stanford University.  “Now is the time for doctors to delay routine screenings for healthy people who are not displaying warning signs of breast cancer.  This also means it is critically important for people to know what is normal for them, and to report to their health care provider any changes so that necessary care can be provided.”

Komen noted that the warning signs for breast cancer are not the same for all women.  The most common signs are changes to the look or feel of the breast.  Visit komen.org to learn more about the warning signs for breast cancer.  See a doctor if you notice any change in your breast.

About Susan G. Komen Susan G. Komen is the world’s leading nonprofit breast cancer organization, working to save lives and end breast cancer forever. Komen has an unmatched, comprehensive 360-degree approach to fighting this disease across all fronts and supporting millions of people in the U.S. and in countries worldwide.  We advocate for patients, drive research breakthroughs, improve access to high-quality care, offer direct patient support and empower people with trustworthy information.  Founded by Nancy G. Brinker, who promised her sister, Susan G. Komen, that she would end the disease that claimed Suzy’s life, Komen remains committed to supporting those affected by breast cancer today, while tirelessly searching for tomorrow’s cures. Visit komen.org or call 1-877 GO KOMEN. Connect with us on social at ww5.komen.org/social.

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SABCS 2019 Key Takeaways

Komen NYC’s Key Takeaways from the San Antonio Breast Cancer Symposium (SABCS) 2019 December 9-13, 2019 Henry B. Gonzalez Convention Center San Antonio, TX

Our first-day selfie! Yay!!

Patient Advocate extraordinaire, Kelli Davis, and I were thrilled to represent Komen NYC!  SABCS is the yearly mecca for breast cancer researchers, oncologists, surgeons, and radiologists from every corner of the globe.

It could be hard to get to the sessions because of all the people we stopped to chat with.

Stopping to check-out the Male Breast Cancer Coalition’s booth.

Running into Komen Scholar, Steffi Oesterreich, PHD

K. Davis, S. Oesterreich, PhD, N. Stromer, L. Tantawi

Particularly notable this year and totally fantastic? The SLEW of bold and intrepid patient advocates who came to SABCS19 to SLAY. Here is fearless patient advocate, Lianne Kraemer, taking the microphone to advocate for trials to NOT exclude patients with active brain metastases.

Go Lianne!

I would be remiss to not give a shout-out to Eli Lilly for instituting a Patient Advocate Lounge!!! It was conveniently located and provided refreshments and a meet-up place for all the advocates.

Me and Kelli with Komen Scholar and Komen NYC Medical Advisory Committee member extraordinaire, Dawn Hershman, MD, MS. Dr. Hershman gave an eye-opening presentation on the prevalence and risks associated with non-adherence to endocrine therapy. “Therapy doesn’t work if it’s not taken.” Less than 50% of patients take hormone therapy correctly for the full duration prescribed!!

L. Tantawi, K. Davis, D. Hershman, MD, MS

Notable themes throughout the conference? Deescalation of therapy and finding more ways to bring immunotherapy into breast cancer treatment.

Possibly the most exciting, tears of joy, practice-changing presentation? The HER2CLIMB study which was presented by Komen Scholar, Ian Krop, MD, PhD. This study showed reduced risk of progression or death by 46%!!  AND 47% with active brain mets. Since SABCS19 the FDA has granted Breakthrough Therapy Designation to the addition of this study’s drug, tucatinib, to trastuzumab (Herceptin) and capecitabine for patients with locally advanced unresectable or metastatic HER2-positive breast cancer, including those with brain metastases. Exciting news for our HER2-positive MBC friends who have progressed on other lines of treatment.

Kevin Kalinsky, MD, MS, a Komen NYC Medical Advisory Committee Member and amazing Komen NYC friend hit it out of the park discussing immune activity in early-stage vs. metastatic triple-negative breast cancers. Is PD-L1 status the best predictor for checkpoint inhibitor response? Also discussed, the potential for overtreatment with checkpoint inhibitors in the curable subset and the likelihood of long-term, debilitating toxicities. And the importance of “Right patient, right agent, right time.”

Susan G. Komen is funding potential practice-changing research for early-stage aggressive HER2+ disease. Could targeted therapy TDM1 be better than Herceptin plus Taxotere?

Congrats!! Komen NYC friend, the always amazing, Neil Vasan, MD, Ph.D. was selected for a Susan G. Komen Career Catalyst Research Grant. His project: Conquering Metastasis, Exploiting PIK3CA Mutations to Improve PI3K-targeted Therapy for ER+ Metastatic Breast Cancer.

And lastly, look at this!!!!! An oral paclitaxel (Taxol) which = less neuropathy and alopecia. Sounds like a game-changer with regards to patient quality of life!!!

Another SABCS Highlight? The annual Brinker Awards for Scientific Distinction. Read more about the 2019 awardees.

Also notable:

Important Susan G. Komen Funded research presented at SABCS19, INFORM Study: Treatment Options for HER2 Negative patients with BRCA 1/2 mutations.

Important study presented by Komen Scholar, Bryan Schneider, MD,  moves us closer to predicting recurrence and informing the treatment of triple-negative breast cancer.

Want more? Check out Living Beyond Breast Cancer’s interview with Dr. Hope Rugo sharing her key highlights. And for all things SABCS19 and MBC please read Anne Loeser’s, the author of the Insider’s Guide to Metastatic Breast Cancer, summary. And of course, the Komen NYC Twitter feed has all of our live reporting.

Look who we ran into on our last day!! Our friend and Susan G. Komen Chief Scientific Advisor, George Sledge, Jr. MD.

And, last but not least, we picked up some GREAT healthy eating tips and recipe cards from our friends at Athenex Oncology. They are FREE! Order as many as you need!