END OF YEAR NEWSLETTER 2024

 

END OF YEAR NEWSLETTER
https://conta.cc/4iRYoF0

National Family Health History Day - November 28th

Gather and share details about any health conditions that may run in your family. Knowing this information can help you identify potential risks for conditions like heart disease, diabetes, or cancer, giving you and your doctor a chance to plan for early screenings or preventive measures. 

The Inherited Cancer Registry (ICARE) has amazing resources!

↪️ Download a helpful handout: https://lnkd.in/gC4cZ9Sv

↪️ If you've had genetic testing, use our resources to share results: https://lnkd.in/gAukjpUk

↪️ If you've already had genetic testing for inherited cancer and want more information about your results OR want information and guidance before getting tested, we provide free education and an inherited cancer risk assessment through our Tool for Inherited Cancer Predisposition Counseling and Testing Study (TIPS): https://redcap.link/TIPS

↪️ Find a certified genetics professional near you: https://lnkd.in/eA7d8HUw

SHARSHERET event - November 20, 2024

Last night, I had the privilege of speaking to over 100 women at a powerful Sharsheret event in South Florida organized by Sara Trosty Walsh, LCSW. Whenever I speak, I aim to educate individuals about hereditary cancer in a way that makes them feel both comfortable and empowered to advocate for themselves with their healthcare. If someone is shy, I encourage them to bring a trusted, "pushy" friend with them to medical appointments. Sometimes individuals need a gentle reminder to honor themselves; that it's ok for them to ask hard questions, it's their right get a 2nd and/or 3rd opinion, and that it's absolutely ok for them to change doctors.

Sharsheret is a Hebrew word that means "chain". It symbolizes the connections that women, families, and communities form while facing breast and ovarian cancer.

Amy Byer Shainman @BRCAresponder,  11/20/24
Sharsheret Event South Florida

 

1 in 40 Ashkenazi Jews – men and women – carries a BRCA gene mutation, more than 10x the rate of the general population, making Jewish families significantly more susceptible to hereditary cancer, which could include breast, ovarian, pancreatic, prostate, melanoma or male breast cancer.  

(from the 

Sharsheret website)

Sharsheret’s free support and educational programs serve all women and men nationwide.

Get support at Sharsheret.org

OCTOBER 2024 RECAP!

LOVE, DANIELLE 

Premiere
HEARTLAND FILM FESTIVAL

LOVE, DANIELLE 

Los Angeles screening
with CANCER SCHMANCER

VIDEO

SLIDE SHOW 

Embed from Getty Images 

THE REVIEWS ARE IN! 

LOVE, DANIELLE film

Watch my new BRCA/hereditary cancer film LOVE, DANIELLE online (available in the US) through 10/20/24 via the Heartland International Film Festival →  https://watch.eventive.org/hiff2024/play/66c4bb7d0292151c41d27d44 

(If you love it, please vote 5 stars!)

Starring: Devin Sidell, Jaime King, Barry Bostwick, and Lesley Ann Warren

WATCH THE TRAILER! 

LOVE, DANIELLE - New BRCA Feature Film!

I'm thrilled to announce that after 4+ years of hard work, 
 the film I produced is complete!
 LOVE, DANIELLE 

AND...it was selected for the 33rd Heartland International Film Festival! Tickets are now available to watch virtually or in person at: 

HeartlandFilmFestival.org!

💗

Amid family drama and dysfunction, a woman who carries a

BRCA gene mutation must decide whether or not to remove her

breasts and ovaries to reduce her cancer risk. 

Follow the NEWS & EVENTS page on the 

LOVE, DANIELLE website 

to find out how you can watch the movie!

💗

LOVE, DANIELLE
INSTAGRAM
TWITTER/X
FACEBOOK
TIKTOK

💗

CLICK HERE to hear a TikTok message from 

lead actress/writer/producer 

Devin Sidell!

💗

"I hope that the character of Danielle serves as an educational tool, helping previvors feel informed and not alone. For others, I hope seeing Danielle's journey will provide a deep understanding of the previvor experience helping them understand the challenging reality of being BRCA-positive without a cancer diagnosis." 

- Amy Byer Shainman, EP, Producer 

CAST PICS

RESEARCH OPPORTUNITY for BRCA1, BRCA2, & Lynch Syndrome gene mutation carriers

Do you carry a BRCA1, BRCA2 or Lynch Syndrome gene mutation? 

See if you are eligible to be in the IGNITE study.  

The IGNITE study is an opportunity to help untested family

members. Participants will receive gift cards for completing surveys as part of the study. 

YOU CAN ALSO FOLLOW THE IGNITESTUDYTX on SOCIAL MEDIA

• 

  Connect with us on Instagram for updates, stories, and insights related to the study. Follow us @ignitestudytx 

• 

  Join our Facebook community for discussions, live events, and additional information. Visit us here

• 

  Follow us on Twitter for real-time updates, news, and engagement. Find us @IGNITE_STUDYTX

Health Screening and Cancer Risk Management Guidelines for BRCA1 and BRCA2 Carriers

What are the Health Screening and Cancer Risk Management Guidelines 
for BRCA1 and BRCA2 Carriers?

The following is derived from NCCN Guidelines, Version 3.2024, BRCA-Pathogenic Positive Management. The National Comprehensive Cancer Network (NCCN) is a consortium of cancer centers with experts in management of hereditary cancer. The NCCN updates their guidelines for risk management for people with hereditary risk for cancer based on the latest research. In general, NCCN guidelines dictate the standard of cancer for high-risk patients in the United States. Visit them at nncn.org

WOMEN

• Breast awareness starting at age 18

• Clinical breast exam every 6-12 months, starting at age 25

• Annual breast MRI (magnetic resonance imaging) for people between the ages of 25 and 29 (breast MRI is preferred because of the theoretical risk of radiation exposure in mutation carriers)

• Annual breast MRI and Mammogram for people ages 30-74

• Age to begin breast MRI and mammography may be individualized if a breast cancer diagnosis in the family has occurred before age 30

• Age 75 and above, management on an individual basis

*Women please note: Although not an NCCN guideline, some providers clinically consider transvaginal ultrasound and CA-125 blood test monitoring. However, data does not support its efficacy. These two screening tests have not been proven effective in regularly identifying ovarian cancer.

RISK REDUCTION for WOMEN (non-surgical)

• Consultation with gynecologic oncologist or gynecologist with expertise in genetic susceptibility to gynecologic cancer recommended

• Consideration of oral contraceptive pills for ovulation suppression

• Levonorgestrel intrauterine device (LNG-IUD) has been shown to reduce risk for ovarian cancer in the average risk population

RISK REDUCTION for WOMEN (surgical)

• BRCA1: RRSO (risk-reducing salpingo-oophorectomy) between the ages of 35 and 40

• BRCA2: RRSO between the ages of 40 and 45 (unless age at diagnosis in the family warrants earlier age for consideration of prophylactic surgery)

• CA-125 and pelvic ultrasound are recommended for preoperative planning

• Discuss option of RRM (risk-reducing mastectomy)

• Consider risk reducing agents (medications) as options for breast cancer

MEN

• Breast self-exam at age 35

• Clinical breast exam, every 12 months, starting at age 35

• Consider annual mammograms age 50 or ten years before the earliest known male breast cancer in the family, whichever comes first

• Prostate cancer exam and PSA blood test every 12 months starting at age 40

• Starting ages may be individualized based on family history

FOR WOMEN AND MEN

• Individualized melanoma screenings based on cancers observed in the family - Annual full body skin exam - Melanoma eye exam - Minimize ultraviolet exposure

• For BRCA1 or BRCA2 positive families with a family history of pancreatic cancer, consider pancreatic screening beginning at age 50 (or 10 years younger than the earliest pancreatic cancer diagnosis in the family, whichever is earlier). Pancreas screening is recommended if there is pancreatic cancer diagnosed in a first or second degree relative on the same side of the family as the BRCA positive individual. EUS (endoscopic ultrasound) and abdominal MRI/MRCP are considered the most accurate tools for pancreatic imaging and do not involve ionizing radiation.

*Women and men please note: The ASGE (American Society for Gastrointestinal Endoscopy) recommends all individuals with a BRCA1 or BRCA2 mutation regardless of family history of pancreatic cancer, undergo annual screening for pancreatic cancer with MRI/MRCP or EUS beginning at age 50 (or 10 years earlier than the earliest pancreatic cancer in the family).

*Women and men please note: Some studies have suggested there may be an elevated risk for colorectal cancer in BRCA positive individuals. However, there is insufficient evidence to support a change in surveillance guidelines at this time. Enhanced colorectal surveillance is presently based on personal and family history of colorectal polyps, and colorectal cancer.

--------

NCCN Guidelines compiled by Amy Byer Shainman, @BRCAresponder and fact checked by a certified genetic counselor. These 2024 NCCN guidelines are included in the 2024 Audiobook Resurrection Lily The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I Never Knew by Amy Byer Shainman

AUDIOBOOK now available!

Exciting news! "Resurrection Lily" is now available as an audiobook. The audiobook edition includes updated information, including the latest (2024) NCCN screening and cancer risk management guidelines for BRCA1 and BRCA2 carriers. Don't miss out! You can find it on platforms like Audible. A fantastic voiceover talent, Jamie Hill, narrates the audiobook (I narrate the preface). Check it out!

Available on 🎧

Amazon

Audible

Rakuten Kobo

Audiobooks.com

Storytel

Libro.fm

and 

Everand, Hoopla, BookBeat, Chirp, Bookmate, Overdrive, Ubook, Globook, Sounded, Nextory, YouScribe, Divibib,The Audiobook Store, Audiobooks Now, PocketFM, Downpour, Mackin, Audioteka, Speechify, StoryFair, Calm Radio

Narrated by Jamie Hill and Amy Byer Shainman

Resurrection Lily shares a story of inheritance and intuition, of what can surface in the body and the spirit when linked by DNA. As Amy Byer Shainman discovers she has inherited a BRCA gene mutation that puts her at high risk of developing certain cancers, she struggles to come to terms with preventively removing her breasts when she does not have a breast cancer diagnosis. Through her experience making decisions about her health, Amy becomes invigorated with purpose and establishes herself as a leading advocate for those with BRCA and other hereditary cancer syndromes, tirelessly working to educate others facing the same daunting reality.
Painting a timely and moving portrait of what it feels like to carry a BRCA gene mutation, Resurrection Lily provides firsthand insight into the patient experience. Weaved throughout Amy's open and vulnerable story is the expertise of her doctors, education from top medical experts in cancer genetics, and whispered lifesaving guidance from her grandmother Lillian.

Fulfilled, Rejuvenated, Mindful!

View this post on Instagram

A post shared by Amy Byer Shainman (@brcaresponder)

WHAT IS A PEDIGREE? (In memory of my Dad, 1927 - 2019)

PEDIGREE of AMY BYER SHAINMAN, (father's side of the family)

One way to record a family history is by drawing a family tree called a “pedigree.” A pedigree represents family members and relationships using standardized symbols. As patients relate information about their family history, a pedigree can be drawn much quicker than recording the information in writing and allows patterns of disease to emerge as the pedigree is drawn.

 The above pedigree includes Amy and her father’s side of the family. The females are represented by circles, and the males are represented by squares. Any person who has been diagnosed with a form of cancer is darkened in with a color or a symbol to represent the type of cancer diagnosis. Any circle or square with a line drawn through it indicates someone who is deceased. The numbers by each symbol represent the age of the person or, if he or she is deceased, the age at which he or she passed away. Amy is the circle on the far right.

- Constance Murphy, APRN, CGRA, member of the National Society of Genetic Counselors

(from page 158 of Resurrection Lily, The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I Never Knew by Amy Byer Shainman)

me and my Dad, July 2, 2000

@BRCAresponder

3 Decades, 3 Cancers: Stacey Sager's story

For anyone who has ever faced a cancer diagnosis, Eyewitness News Reporter Stacey Sager describes the importance of speaking up, never giving up, and knowing your own body. As a BRCA-positive woman, Stacey has long advocated for the importance of staying vigilant about both breast and ovarian cancer. Stacey walks viewers through a deeply personal and shocking journey -- one that is a quarter of a century-long. She details her 3 separate cancer cases, and how her most recent cancer formed under the rarest of circumstances. Stacey's doctors from Mount Sinai's Dubin Breast Center of The Tisch Cancer Institute and U Penn's Basser Center for BRCA also enlighten viewers on their thoughts regarding triple-negative breast cancer and the likelihood of vaccines. A must-see for anyone who hopes to find cancer before it is too late, and the inspirational account of someone who continues to defy her own lifetime risk. For a better viewing experience, you can stream the series on-demand on our ABC7NY app on Roku, FireTV, Apple TV, and Android TV. WABC Television New York, LLC | 2024