Genetic testing

Zebra, that is funny. Two of my 4 siblings tested. Those 2 carry the Brca 2 mutation. Cancer on both sides of the family. Sister who has the mutations daughter tested. She carries the mutation. My older sibling wanted to roll the dice. No testing. Cancer, ut no conversation with me on if it may be genetic. Not everyone believes in the genetics angle.

@katgob
I’m glad some of your family got tested, but sorry to hear they were all positive. People fall into 2 camps, the ones that like to be fully informed about their health and take charge and those who don’t want to know any details — lalalalala — denial. Those of us on this MayoConnect platform like to make informed decisions. Doctors have limited time with each patient so we need to our own advocates, ask informed questions and be proactive.

I am hesitant to do genetic testing because of the political climate in the United States. The GINA act currently still protects genetic data from being used by health insurance companies, but it never protected people from repercussions in disability insurance, long term care insurance, and life insurance decisions. I currently have LTC insurance that's not yet out of the initial period (i.e. the period in which they could cancel me.) I have a friend who was refused for her company's life insurance because of her BRCA designation. That was sobering.

In theory, there should be privacy and data protection laws protecting me. But those things are dissolving right before our eyes in many parts of American life, and I don't want to risk being caught in that.

It's not a crisis for me -- I would not choose to get a double mastectomy even if I learned I was BRCA positive (no children, way post-menopausal). If I were younger or had children I'd be singing a different tune. And I'm crazily diligent about testing, even paying out of pocket for extra diagnostic stuff. Just BRCA-curious.

Hugs and good luck to everyone going through this mess.

Zebra, Katgob. Lucky me, all my siblings got tested after I told them. They’re not mad at me but thank me instead. I’m reluctant to tell my cousins. They love to shoot the messenger.

Diamonddog that was a good point to bring up and make people aware of the insurance issues. My surgeon advised me to have my son start a private life insurance policy before testing.

Myoga— so glad your siblings were grateful you were trying to help. It was my extended family too that became silent. I had already lost one brother to cancer and my other brother was close to dying from cancer when I was diagnosed. I don’t know if they would have tested if healthy (they don’t have biological children) but they would have been thankful. The brother who was dying from esophageal cancer also had melanoma so I’m betting he had the BRCA2 mutation. My other brother passed from lung cancer at 48 and never smoked a day in his life so I’m betting we have some other unidentified cancer mutations in the family.

I’m so sorry your brothers passed away from cancer. My mon also had lung cancer, but she died from stroke while in remission. Her two uncles also had lung cancer, one smoke, the other didn’t. If there’s a lung cancer gene, I would like to know.
We’re the lucky one that we found out and were treated. Unlike you I hadn’t have the courage to go through the mastectomy until 2 years later. I hope is that we will stay in remission for a long long time. I’ll be 64 in a few months. Give me 15-20 years, I’ll be ready. LOL . 🤗

Yes, we are definitely the lucky ones! We’re about the same age so I’m right there with your thoughts. I’ve been in treatment for recurrent breast cancer (chest wall) for the last 5 years but it’s going well. Let’s meet for coffee on our 80th birthday! 😀

Sorry about your mom and her uncles. There are some genetic mutations that are associated with lung cancer, just google lung cancer genes. I have no plans to test because I also have slow growing neuroendocrine lung cancer (uncommon) so I’m in treatment and have regular CT scans already monitoring growth. My brother had the common and more deadly NSCLC that may be tied to mutations.

Thanks. I’ll google for lung cancer gene.
Yes!!! I’ll call Starbucks to make reservation 20 years in advance.😂🤗

Moffit had me tested and never expected to find anything. My testing was covered by Medicare and supplement, but under $200 if you heave to pay for it I believe. I had triple negative breast cancer and a daughter and sister. The ATM gene turned up. It did inform my treatment and my daughter and sister were tested free by my testing company. Sister did not have it and daughter did. This will mean more regular testing for her. Well worth doing for your benefit and your family members.