As someone with two inherited cancer gene mutationsโMSH6 (Lynch syndrome) and CHEK2 โ I know firsthand the emotional and practical complexities of navigating hereditary cancer risk. My journey began without what many might consider “classic” red flags โ just a few scattered cancer cases in my family, none of which seemed connected at the time. …
Permanent link to this article: https://inheritedcancer.net/icare-newsletter-spring-2025-community-spotlight/
MyLynch is a resource for Lynch syndrome patients that provides personal cancer risks, education on interventions, and adjusted risk estimates, depending on the intervention(s) the patient chooses to pursue. If you have Lynch syndrome, go to https://hereditarycancer.dfci.harvard.edu/mylynch/ to get your personalized risk estimate. Check out a recent presentation by Dr. Yurgelun, who helped develop MyLynch, …
Permanent link to this article: https://inheritedcancer.net/icare-newsletter-spring-2025-lynch-syndrome-personalizing-risks/
Breast, Ovarian, Pancreatic, and Prostate Cancer Colorectal, Endometrial, and Gastric Cancer
Permanent link to this article: https://inheritedcancer.net/icare-newsletter-spring-2025-national-comprehensive-cancer-network-nccn-guideline-updates/
The National Comprehensive Cancer Network (NCCN) released updated Genetic Familial High-Risk Assessment Colorectal, Endometrial, and Gastric Cancer guidelines on October 3rd, 2024. In these updated guidelines, NCCN revised information about EPCAM gene (which has usually been lumped together with MSH2) as follows โคธ You can check out the full guidelines by creating a FREE account …
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The National Comprehensive Cancer Network (NCCN) released updated Genetic Familial High-Risk Assessment Colorectal, Endometrial, and Gastric Cancer guidelines on October 3rd, 2024. Updates include โคธ Added the following to testing being considered: Personal history of colorectal or endometrial cancer at or older than age 50, and: Revised information about EPCAM gene (which has usually been …
Permanent link to this article: https://inheritedcancer.net/post100824/
Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic Cancer โ Released February 12th, 2024 (V3.2024) Check out the full guidelines by creating a FREE account at www.nccn.org/professionals/physician_gls/pdf/genetics_bop.pdf Contralateral breast cancer risks in these updated guidelines: Expanded guidance about gynecologic cancers in BRCA1/2 carriers: Some highlights related to HRT include: Genetic/Familial High-Risk Assessment: Colorectal Cancer โ Released …
Permanent link to this article: https://inheritedcancer.net/icare-newsletter-spring-2024-national-comprehensive-cancer-network-nccn-guideline-updates/
New research reveals that individuals under the age of 50 with Lynch Syndrome often develop small, flat adenomas, particularly in the right (proximal) colon. This finding emphasizes the importance of rigorous screening, with a special focus on the proximal colon, among these young Lynch Syndrome patients ๐ฉบ๐ Learn more at: https://www.dldjournalonline.com/article/S1590-8658(23)00946-5/fulltext Reference: Alric, et al. …
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Check out the full NCCN guidelines by creating a FREE account at www.nccn.org Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic CancerReleased August 28th, 2023 (V1.2024) โบ Transgender, Non-Binary, and Gender Diverse Individuals: NEW section on care (Page 63-66, TNBGD-1 to 4)โบ Li-Fraumeni Syndrome: Significant updates to content (risks and care) (Pages 57-60, LIFR-A): Table added …
Permanent link to this article: https://inheritedcancer.net/icare-newsletter-fall-2023-national-comprehensive-cancer-network-nccn-guidelines-updates/
The National Comprehensive Cancer Network (NCCN) just released updated colorectal cancer guidelines which includes: You can check out the full guidelines by creating a FREE account at: https://www.nccn.org/professionals/physician_gls/pdf/genetics_colon.pdf
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Why have genetic testing? Genetic testing for inherited cancer can help guide care, including:โข Cancer treatment plans, such as chemotherapy, drugs, surgery, and radiationโข Cancer screening and prevention Sharing genetic test results can also help family members understand their cancer risks.โ
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Breast, Ovarian, and Pancreatic Guidelines V.1.2022: Released August 11th, 2021 Colorectal Cancer Guidelines V.1.2021: Released May 11th, 2021 Check out the full NCCN guidelines by creating a FREE account at www.nccn.org
Permanent link to this article: https://inheritedcancer.net/newsletter-fall-2021-updates-to-nccn-genetic-familial-high-risk-assessment/
A recent study found that earlier diagnosis improved survival in people at high risk of pancreatic cancer.High risk was defined based on:family history and/orinherited gene mutation (BRCA1, BRCA2, CDKN2A, Lynch Syndrome genes, PALB2, ATM, and STK11)Read the article at the link: https://ascopost.com/news/june-2022/outcomes-of-pancreas-surveillance-in-the-caps5-study-and-total-caps-cohort/Reference: Dbouk, et al. J Clin Oncol. 2022 Jun 15:JCO2200298. doi: 10.1200/JCO.22.00298. PMID: 35704792.
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In every ICARE newsletter we feature a ๐ฐ๐ผ๐บ๐บ๐๐ป๐ถ๐๐ ๐๐ฝ๐ผ๐๐น๐ถ๐ด๐ต๐ to share their experience with inherited cancer. In the latest edition, Dave Dubin, co-founder of AliveAndKickn, shares his experience with Lynch Syndrome. Check out his full story at: https://inheritedcancer.net/community-spotlight/
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Below you may watch a featured video from the March 2021 Genetics Case Conference, which focused on inherited colorectal cancer with guest expert Georgia Wiesner, MD from Vanderbilt University Medical Center.
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SJoin the Colon Cancer Coalition and AliveAndKickn for the Living with Lynch 2020 Virtual Patient Workshop on๐๐ฟ๐ถ๐ฑ๐ฎ๐, ๐ข๐ฐ๐๐ผ๐ฏ๐ฒ๐ฟ ๐ต๐๐ต ๐ณ๐ฟ๐ผ๐บ ๐ญ๐ฝ๐บ-๐ฑ๐ฝ๐บ ๐๐ง to hear unique patient perspectives and the latest information from experts on Lynch syndrome. Visit https://www.livingwithlynch.org/2020-living-with-lynch to register for this free workshop today!
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Updates to National Comprehensive Cancer Network (NCCN) Genetic/Familial High-Risk Assessment: Colorectal Guidelines (Version 1.2020, posted July 21, 2020) For individuals with Lynch Syndrome: Cancer risks were updated based on information from recent studies: Main updates included cancer risks in PMS2 (endometrial, ovarian, and prostate cancer), MSH2 and EPCAM (prostate and brain cancer), and MSH6 (prostate …
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The National Comprehensive Cancer Network (NCCN) released new guidelines for 2020 on July 21, 2020. The big changes included refining some of the risks for genes involved in Lynch Syndrome, and providing specific guidance about cancer screening that may slightly differ by gene. You can check out the full guidelines by creating a FREE account …
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Gene: EPCAM Cancer Risks and Management (per NCCN version 3.2019): Women: Endometrial cancer risk: Elevated at 21%-57% – Consider risk-reducing hysterectomy. Ovarian cancer risk: Elevated at 10%-38% – Recommend risk-reducing bilateral salpingo-oophorectomy (removal of ovaries and fallopian tubes). Men and Women: Colorectal cancer risk: Elevated at 43%-52% – Recommend colonoscopy every 1-2 years starting at …
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There were significant updates and restructuring of the guidelines, with some highlights included below: Substantial reorganization of the guidelines as follows: Now organized by organ site, rather than primarily by certain high penetrance genes Focused efforts to simplify genetic testing criteria Only one flow diagram included, to outline the โgenetic testing processโ Following scenarios now …
Permanent link to this article: https://inheritedcancer.net/1nlw2020/
We are excited to share the latest version of the NCCN Genetic/Familial Breast, Ovarian and Pancreatic Guidelines (V1.2020), which were just updated. Some of the changes made include: PALB2 was added as a high penetrance gene (similar to BRCA1, BRCA2, CDH1, PTEN and TP53) It is appropriate to consider risk reducing mastectomy for cancer risk management …
Permanent link to this article: https://inheritedcancer.net/post12419/
The National Comprehensive Cancer Network (NCCN) is a network of oncology healthcare providers who work together to develop best practice guidelines for the delivery of cancer care. Given the increasing use of testing for mutations in several inherited cancer genes at one time (called โmulti-gene panel testingโ), the Breast/Ovarian and Colorectal Panels sought to provide …
Permanent link to this article: https://inheritedcancer.net/2nls2016/
The most common form of inherited ovarian cancer is due to mutations in the BRCA1 and BRCA2 genes, which are present in 10-15% of women with ovarian cancer and lead to an ovarian cancer risk of up to 44% and 27%, respectively. Another set of genes known to raise ovarian cancer risks are the mismatch …
Permanent link to this article: https://inheritedcancer.net/2nlw2016/
