Nobody should suffer and die of a preventable cancer. And no family should have to watch helplessly as a beautiful life is cruelly consumed by an avoidable disease and then have to bear the nearly unbearable grief of that loss for the rest of their lives.
On a summer evening in June 2021, I embraced Donna, my beautiful wife of 40 years, as she took her last breath. Having the love of your life die in your arms from cancer is not romantic. It is one of the most unimaginably awful, painful and traumatic events anyone should have to endure. It is having to bear the unbearable.
Donna died of metastatic triple-negative breast cancer. She had Hereditary Breast and Ovarian Cancer Syndrome* due to an inherited pathogenic mutation in a BRCA2 gene. Her nearly 4-year cancer struggle was a nightmare journey through some of the darkest regions of hell for her, for me as her caregiver, and for our adult daughter. Yet, Donna gathered her courage and endured every cruel twist this truly evil disease threw at her until it robbed her of her life. Through months and months of toxic chemotherapy, through multiple surgeries, through brain metastases, through inhuman whole-brain radiation sessions, through numerous seizures, through frustrating episodes of aphasia, through all the ER visits, she just never gave up.
And my heart aches knowing that none of it should have happened. Tragically, in spite of a devastating history of cancer in my wife's family, crucial information was not shared. Gene sequencing data, the life-threatening seriousness of the risk, and the extremely urgent need to get genetically tested was never expressly shared by relatives acutely aware of the germline mutation for several years. Had the actual deleterious BRCA2 gene and cancer risk information been responsibly shared as soon as it was known**, Donna would have had the required documentation and the time to gather the necessary doctor referrals for testing that would have confirmed the pathogenic BRCA2 mutation. She then could have had life-saving prophylactic surgery that could have reduced her cancer risk by 95%.
Because my wife died an untimely horrible and needless death, and because our daughter inherited the same BRCA2 mutation that I now know is so prevelant in her mom's family, I'm speaking up. I'm making it a personal mission to help prevent others from suffering like my wife did. (Although life-altering, my daughter has already courageously taken life-saving steps to reduce her cancer risk. Yes, hereditary cancer can strike young. Being a previvor, she will be actively monitored for the other cancers associated with a BRCA2 mutation all her life.)
Below this story you will find links to numerous hereditary cancer resources to educate and empower all who may want to learn more about genetic causes of cancer. There are also links to help you learn how to get genetic testing should you have a family history of cancer and/or suspect hereditary cancer in your family. In addition, there are numerous links to material on how to openly and intelligently talk with your relatives about genetic mutations and hereditary cancer risks.
Breaking the cycle of hereditary cancer in families takes a determined effort and courage.
If you find you have a mutation, please talk to your family and share life-saving information. And sharing specific information is vital.
It's not like you can go to your neighborhood pharmacy and ask for a genetic test for cancer-causing variants. There many different genetic mutations that can cause cancer.
Without
exact gene mutation information, doctors can be unsure of what to test
for and insurance companies are likely to deny requests for testing. With BRCA mutations alone, there are almost 5,000 pathogenic (cancer risk) variants and over 61,000 variants that are yet to be reviewed.
Immediately, openly, emphatically, and persistently sharing any inherited genetic threats you might become aware of with all those whom might share DNA could save a precious life. Sit down with parents, brothers, sisters, adult children, aunts, uncles, nieces, nephews, and cousins -- all of them need to know.
Hereditary cancer can strike at any age. However, there are many options for prevention and life-saving early detection of cancer if information gets shared. So, show up and speak up! With love, empathy, thoughtfulness, fierce compassion, and courage, nobody has to suffer and die of a preventable cancer!
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.
Short Hereditary Cancer Syndrome Video
FacingOurRisk.org
Founded in 1999 under the principle that nobody should face hereditary cancer alone, FORCE or Facing Our Risk of Cancer Empowered's mission is to improve the lives of individuals and families facing hereditary cancer.
Kintalk
Helping families by providing free education, support and help finding early detection and genetics services.
The BRCA Exchange
The BRCA Exchange aims to advance our understanding of the genetic basis of breast, ovarian, pancreatic and other cancers by pooling data on BRCA1/2 genetic variants and corresponding clinical data from around the world. Search for BRCA1 or BRCA2 variants above.
**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
Read more...
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.
Read more...
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
Read more...
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).
Read more...
Resources with videos:
**Bring Your Brave: Talking About Your Family History of Cancer
Hereditary Cancer Books
By Kathy Steligo, Sue Friedman, and Allison W. Kurian
ISBN-13: 978-1421444260
ISBN-10: 0147516900
Other
Cancer Resources
Prevent Cancer Foundation
The
mission of the Prevent Cancer Foundation is empowering people to stay
ahead of cancer through prevention and early detection.
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.
The American Childhood Cancer Organization
St. Jude's Children's Hospital
Breast
Cancer Research Foundation
National Breast Cancer Foundation
Breastcancer.org
National Breast Cancer Coalition
BrightPink.org.
Supporting a Friend with Cancer -- www.100Actsoflove.com
My wife's memorial tribute page at FacingOurRisk.org
If I had a flower for every time I thought of you...I could walk through my
garden forever.
-- Alfred Lord Tennyson
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