9/25/21

National Hereditary Cancer Week, National Previvor Day, and How to Prevent a Tragic Death

National Hereditary Cancer Week is a yearly event that begins of the last Sunday in September and ends the first Saturday in October. National Previvor Day occurs on the Wednesday of that week
 
"An individual doesn't get cancer, a family does." - Terry Tempest Williams
BRCA awareness and previvor ribbon
BRCA Awareness and Previvor Ribbon

The overwhelming grief of losing a loved one to a preventable cancer caused by an inherited genetic mutation is unbearable. Hopefully the information here will help numerous individuals and families avoid the same tragic experience.

Millions of individuals and families are currently facing the challenges of treatment for hereditary breast, ovarian, endometrial, melanoma, pancreatic, colorectal, prostate, blood and other cancers. National Hereditary Cancer Week was created to share information to save lives as well as to recognize and honor those struggling against inherited genetic mutation-caused cancers. That also includes hereditary cancer survivors, previvors, and caregivers, like me.

Last week my brave daughter officially became an inherited BRCA2 mutation previvor. My beloved wife should have been a previvor too. S
adly, in June she traumatically died in my arms from metastatic breast cancer caused by an inherited BRCA2 mutation. Her incredibly courageous struggle against cancer was a nightmare journey through hell with one setback after another. Heartbreakingly, it was all preventable! Because of HIPAA rules, there is currently no effective way for doctors to be alerted to potential familial genetic mutation risks for cancer for their patients, it often falls to family members affected by germline BRCA mutations to spread the word. Unfortunately, in Donna's case, despite a devastating family history of cancer, family members acutely aware of a pathogenic BRCA2 mutation for years failed to effectively communicated the seriousness of the risk. Had gene sequencing and familial cancer risk information been expressly conveyed as soon as it was known, she would be alive and well and celebrating National Previvor Day this year with our daughter. Again, hopefully the information shared here will help other families avoid the same tragic experience.

There are numerous mutations associated with hereditary cancer, including BRCA1/2, ATM, BRIP1,CHEK2, TP53, CDK4,
PALB2, PTEN, RAD51C/D, CDK4, CDKN2A, and several others that families with a history of cancer should be aware of. And the threat of hereditary cancer is something that should be taken very seriously. Cancer is a truly evil disease. A few of the body's cells are dividing uncontrollably. It can arise quickly and spread easily throughout the body and even cross the blood-brain barrier. And it can be or become therapy-resistant. However, there are many options for lifesaving early detection and even preventing hereditary cancers.

National Hereditary Cancer Week is an excellent time to educate yourself about your family's health history -- especially if there’s a family history of cancer. And act on it! Take the information to your doctor or talk to a genetic counselor. ASAP! And show up for your family too!** Be that lifesaving hero! Sit down and talk to them. And it's not an "oh, by the way" moment. Someone's life may be at stake! Openly, emphatically, and persistently share any inherited genetic threats you might find along with all the data with all those whom might share DNA. Brothers, sisters, adult children, aunts, uncles, nieces, nephews, and cousins. All of them! You might prevent an unbearable tragedy.


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* Draw a family health and/or cancer history pedigree chart.


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**Links for information about talking to your family about health and possible cancer threats:

Please share these links...

Hereditary Breast and Ovarian Cancer Syndrome
Hereditary breast and ovarian cancer syndrome is an inherited cancer-predisposition syndrome. Affected individuals have a significantly greater risk of developing certain cancers, particularly breast cancer, in both men and women, and ovarian cancer in women. Many affected individuals tend to develop cancer earlier in life as well, usually before the age of 50.

Brief Hereditary Cancer Syndrome Video


FacingOurRisk.org
Facing Our Risk of Cancer Empowered or FORCE.
FORCE's mission is to improve the lives of individuals and families facing hereditary cancer.

 

BrightPink.org.
Bright Pink's mission is to accelerate, deepen, and expand the impact of life-saving breast and ovarian health interventions.

 

Kintalk
Helping families by providing free education, support and help finding early detection and genetics services.

 

BRCAStrong
To alleviate the emotional and financial burdens of women facing breast and/or ovarian cancer (regardless of genetic predisposition) through advocacy, direct assistance, empowerment and events.


**It's important to share medical information with your family
Because hereditary cancer runs in families, it is important to exchange medical information with your relatives. Privacy laws make it difficult for health care providers to share their patients' medical information with anyone else. This leaves sharing of life-saving information up to members of the family affected by the mutation.


 **Sharing Information with Adult Relatives
By definition, hereditary cancers affect entire families. Inherited gene mutations can be passed from mothers and fathers to sons and daughters. Blood relatives, even distant relatives, may share the same mutation that runs in a family. Breaking the cycle of hereditary cancer requires two important steps:

    -- genetic testing
    -- sharing test results with relatives


Each family member who is tested and shares their results plays a key role in protecting their loved ones from cancer. This cycle of testing-sharing-testing-sharing is known by experts as “cascade testing.”


**Sharing Medical Information with Relatives
If possible, the following family medical information should be collected and shared with close relatives:

    -- family members who were diagnosed with cancer
    -- age at diagnosis
    -- type of cancer, including pathology results, if available
    -- genetic test results


  **Talking to Your Family About Your BRCA1 or BRCA2 Mutation
Learn how to share test results, letters from your doctor or genetic counselor, or other information you received about your mutation with your family. Giving family members information about your specific genetic mutation helps their healthcare providers know exactly which test to use.



**How to Share Genetic Test Results With Family
When you share genetic test results about hereditary cancers, your family members need to know at least these 2 important details to share with their health care providers or genetic counselors:

    -- The name of the specific gene where the mutation was found, like BRCA2
-- The specific mutation in the gene, like 187delAG in BRCA1


**All in the Family: The Importance of Talking About Hereditary Cancer
The key is communicating information with not just your daughter or son, but also extended family such as an aunt, uncle, niece, nephew or grandchild, according to Megan Myers, M.S., a genetic counselor from the University of California San Francisco (UCSF).

 

**Do not wait to tell your family about hereditary cancer risk.



**Encouraging Family Conversations About Hereditary Breast and Ovarian Cancer - YouTube Video Project
 

**Bring Your Brave: Talking About Your Family History of Cancer


  FORCE (Facing Our Risk of Cancer Empowered) publishes educational brochures about hereditary cancer. Click here for free download info. 

 


  Other Cancer Resources
 

Take a Stand!
Staying on top of your health is one of the most important calls you can make. Nearly 5,000 people are diagnosed with cancer every day in the US. Routine cancer screenings are incredibly important for early detection, especially for individuals with a family history of cancer.
 
National Cancer Institute


The American Childhood Cancer Organization


St. Jude's Children's Hospital


Breast Cancer Research Foundation


American Cancer Society
 

National Breast Cancer Foundation


Living Beyond Breast Cancer


Breastcancer.org


Susan G. Komen Foundation


Supporting a Friend with Cancer -- www.100Actsoflove.com



My wife's tribute page at FacingOurRisk.org


Take time to care. A little effort and love can make a big difference. Not just in one life, but in all the lives connected to that life.  -- mark

 

 

By the way, the BRCA Awareness & Previvor Ribbons shown in this post can be downloaded from my website, www.EducatorClips.com, for royalty-free use.

BRCA Previvor Ribbon