@BRCAresponder BLOG
Amy Byer Shainman, Advocate-Author-Producer
WELCOME TO MY BLOG!
Saturday, November 2, 2024
Thursday, October 17, 2024
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
Sunday, September 22, 2024
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: 💗
I'm thrilled to announce that after 4+ years of hard work,
the film I produced is complete!
LOVE, DANIELLE
"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
Monday, July 8, 2024
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 familymembers. 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
Friday, June 28, 2024
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.
--------
Saturday, June 15, 2024
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 🎧
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.