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 a preventable disease and then have to bear the nearly unbearable grief of the loss for the rest of their lives.
On a summer evening in June 2021, I held Donna, my beautiful wife of 40 years, in my arms 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 painful and traumatic events you could ever have to endure.
Donna died of metastatic triple-negative breast cancer caused by 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. Through months and months of toxic chemotherapy, through multiple surgeries, through metastasis to the brain, through the 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, crucial gene sequencing data, the deadly 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. Had specific gene sequencing information (SNP alleles) been responsibly and pointedly shared as soon as it was known**, Donna would have had the documentation and the time to gather the required doctor referrals for testing that would have confirmed the pathogenic BRCA2 mutation. She then could have had life-saving prophylactic surgery that would have reduced her cancer risk by 95%.
Because my wife died a horrible and needless death, and because my daughter inherited the same BRCA2 mutation from her mother, I'm speaking up and making it a personal mission to help prevent others from suffering like my wife did. (Thankfully my daughter has had life-saving prophylactic surgery. Yes, hereditary cancer can strike young. And she will be actively monitored for the other cancers associated with a BRCA2 mutation all her life. Prevention is key.)
Below this story you will find links to numerous 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 genetically tested should you suspect hereditary cancer in your family. In addition, there are numerous links to material on how to intelligently talk with your relations about genetics and hereditary cancer risks.
And be aware that a hereditary cancer mutation threat is not an "oh, by the way" issue. It is a serious life and death issue! Hereditary cancer can strike at any age. And every cancer is different. However, there are many options for prevention and life-saving early detection of cancer. So, show up and speak up! If you have a mutation it is your duty to talk to your family and share life-saving information. Be sure to immediately, openly, emphatically, and persistently share any inherited genetic threats you might become aware of with all those whom might share DNA. Sit down with parents, brothers, sisters, adult children, aunts, uncles, nieces, nephews, and cousins -- all of them need to know. A precious life may be at stake! With love, empathy, thoughtfulness, fierce compassion, and the courage to show up and speak up, nobody has to suffer and die of a preventable cancer!
Please share these links...
Standing on My Hereditary Cancer Awareness and Prevention Soapbox
Father of a Previvor: A Father's Day Story
Patient Advocates Represent a Much-Needed Lifeline for People Who are Dealing with Cancer
Cancer
Centers Need a Room for Rage
Hoping to Prevent Hereditary Cancer
*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.
**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...
**Bring Your Brave: Talking About Your Family History of Cancer
Connecting the Family Cancer History Dots
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.
(After being a cancer caregiver for almost 4 years and having cancer devastate our lives, I think this quote really says it all:
"An individual doesn't get cancer, a family does." - Terry Tempest Williams)
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
Supporting a Friend with Cancer -- www.100Actsoflove.com
How may we live as richly and fully as possible at the end of our lives? How can our doctors best enable us to die with grace and dignity? Rachel Clarke is a palliative care physician who believes that individuals, not their diseases, should sit at the heart of medicine. In a hospice, grief - though painful - is the form love takes when someone dies.
-- Elisabeth Kubler-Ross
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
