This is a tribute to being tenacious, despite having the odds against you. It is a story about someone who led a crusade to educate her extended family about the genetics behind her condition.
Her brother said, “This moment was expected as she had incurable cancer throughout her abdomen which started with the ovarian cancer a few years ago. She was quite diligent pursuing the contributing causes of the ovarian cancer and as a result, added to our family’s understanding of the BRCA-2 gene and the role it plays in this type of cancer. For this, we can be thankful.”
You never know how people are going to react to cancer. It could be someone in the workplace, a close friend or family member. Some people talk about it and others become reclusive.
In this situation, Susan was vocal. When she found out she had ovarian cancer, she insisted on genetic testing. She did this for her children, her siblings and their children.
After she learning that she was a carrier of the BRCA2 (nonworking) gene, her mission was clear – let others know so that they can make an informed decision. It was not going to be a private issue – she was going to be transparent.
There are a number of implications when you are carrier:
- Your siblings may have the nonworking gene because a parent was a carrier. There is about a 50% chance of inheriting the nonworking gene from another carrier.
- The cycle continues – if you carry the nonworking gene, there is a 50% chance you will pass it to your offspring. If the gene is not passed, that line of transfer is dead.
- Having the gene puts you into a high risk category for breast or ovarian cancer. And let us be clear – men can get breast cancer. There are also higher incidences of pancreas cancer, prostate cancer and melanoma associated with the BRCA2 gene.
Genetic testing in the family is not automatically done – you have to ask for it. If your parents are not carriers (testing positive for the BRCA2 gene) then your health insurance will not cover it. If there is a direct relationship with a carrier, most insurance companies will cover the cost of the testing.
If you have a concern with your insurance carriers knowing about the results, you can always opt to do it out of pocket.
With testing, most insurance companies require you to go through genetic counseling. The purpose is to ensure you have applied critical thinking skills before learning your results. Have you thought about what you will do if you do or do not have it?
There may be some people who test positive, have no symptoms or trace of cancer and believe their life is over. It may sound extreme, but again, people react in different ways.
Conversely, there is the survivor’s guilt when you learn you do not have it and other people in your family do.
I learned about all of this because Susan did not get discouraged and became more vocal. She initially sent an email out about her genetic results; the family did not embrace the implications of how her health may affect others.
Some people wanted to ignore it and did not want to know if they had it even though cancer runs through their immediate family. There were others who wanted to make informed decisions.
Susan’s tenacity and unrelenting encouragement helped others discover if they were carriers and in turn enable others to learn about their genetic predisposition.
Learning about your genetic predisposition is not a death sentence; it is a major step in aggressive screening and taking preventive measures to be healthy. And you never know – you might win the lottery and not have it.
My Aunt Susan passed away yesterday. I thank her for being tenacious and transparent – may she rest in peace.