BRCA Genetic Counseling

[AmberOpalite]

Hi, all. So I have a strong history of breast cancer in my Dad’s side of the family. I have decided to get checked for the BRCA genes and potentially get a preventative double mastectomy. I’ve noticed that my fear of breast cancer is ruining my mental health.

I am not worried about scars and being flat chested because I made the choice to remain child free and I never show cleavage, but I am worried about people asking me weird questions in social settings. I don’t handle personal questions well because I’m socially awkward to begin with.

I’m worried that people will ask things like that are gender related (even though I have always identified as female) and if I get lymphedema people asking me about sleeves if I get lymphedema. I don’t like highly personal questions because they make feel cornered.

Is my fear valid or am I overreacting?

 

[stevens]

These days, personal boundaries seem so old fashioned. And then, people who set proper boundaries are considered offensive in some way. Nevertheless, as old as I am I'd consider it very inappropriate to ask someone, whom I did not know extremely well, about any such things. With people posting the most personal details about themselves, using their real names on the Internet, it seems so quaint that anyone would bother with "privacy" and good manners.

From what I've read, your fear about the propensity for aggressive cancer associated with BRCA is hardly unwise. On the other hand, how do you plan to address it? Mastectomy as a preventive is certainly one solution. On the other hand, frequent diagnostic monitoring would also allow addressing problems when they arise and haven't gone too far. Radiology and other non-imaging forms of testing are getting better every day. In 1970, a chest x-ray usually would only reveal cancer when it was advanced. Now, a $300 low-dose CT scan can inventory every little nodule in the lungs for further observation, before they turn into cancer. I only know a little bit about BRCA, but I'd be interested if you could describe the statistical considerations.

As for what other people think, it's always served me best to learn as much as I can and make my own decision. After all these decades, I can say that far more than half the time, the results have been better for me (following my own carefully considered path) than it would have been following the average "wisdom" of others out there.

 

[Neonatal RRT]

Hi, all. So I have a strong history of breast cancer in my Dad’s side of the family. I have decided to get checked for the BRCA genes and potentially get a preventative double mastectomy. I’ve noticed that my fear of breast cancer is ruining my mental health.

I am not worried about scars and being flat chested because I made the choice to remain child free and I never show cleavage, but I am worried about people asking me weird questions in social settings. I don’t handle personal questions well because I’m socially awkward to begin with.

I’m worried that people will ask things like that are gender related (even though I have always identified as female) and if I get lymphedema people asking me about sleeves if I get lymphedema. I don’t like highly personal questions because they make feel cornered.

Is my fear valid or am I overreacting?

These sorts of questions are about "risk assessment". If we have a biased sense of risk assessment, it can be rather crippling in terms of our anxieties and daily lives, we overthink, we focus upon all the potential negatives, and then we find ourselves not acting when we should have. We miss our proper timing, we miss opportunities, and sometimes it leads to poor outcomes later in life. Hindsight being 20/20, I am sure most of us can relate to thinking that, "If I had did this, that, or the other thing that my life would have been better." We all have those "should have, would have, could haves" in our lives that we never acted upon or didn't have the wisdom to see.

Fear-based behaviors cloud our thinking.

Worrying about how others will perceive us will also cloud our thinking.

My advice would be to continue to do some balanced, unbiased research, assess the pros and cons, understand the statistical analysis, consult with a few specialists in this area, and leave these sorts of personal health decisions out of the realm of public opinion. In this case, other people do not matter. It's not any of their business. In this case, only YOU matter.

 

[Richelle-H]

As someone who has family history with both BRCA1 and BRCA2, you should be concerned if you have mutations to either of those, but....

My mother was diagnosed with both primary ovarian cancer and breast cancer as well. She had mastectomies when breast cancer was diagnosed, but what ultimately caused her demise was the ovarian cancer. My sister had both mutations and while she had successful chemo for ovarian cancer it did come back right before her death which was actually the result of heart failure. That most likely from her lifelong weight problem rather than the cancer. My father expired from pancreatic cancer in his eighties, but he was a functional alcoholic for most of his life and only stopped once the cancer was diagnosed, so that had to be a contributing factor.

That is background that I have ignored through all three deaths. Now, I did join spark some 3 1/2 years ago, and asked for any medical alerts on those genes, and so far I have not received one. I choose to ignore any risk to myself as I approach my 79th. I have come close to an early exit from life on three different occasions, none of them were related to the genes under discussion here and at my current age I am perfectly content to spin the wheel.

My mother passed away in her early 60s, my sister in her early 70s, my father in his early 80s and in the latter two cases there were other factors involved. However, all three had fairly active lives right up to their passing.

Have you a long genetic history of breast cancer in your family? Is that why you are so fearful? By all means, if you have a family history, then get yourself checked. It would be a prudent thing to do. The thing is that the stress from worrying is a contributing factor to many things. Educate yourself and use the facts to decide before you act. The mutations themselves only contribute to your inherent risk, they are not automatic in the realm of certainty.

I hope your fears resolve themselves in a positive manner.

 

[Aspychata]

Great advice given. When l have a horrible fear, l ask myself to break down what exactly is causing me anxiety? Could it be your fear of death itself, fear of not living and doing something you want to do, not seeing those you love? It helps to really think what feelings are you running away from. Then let those feelings go. If something triggers you, allow yourself to get in touch again with those feelings, then let it go when you are ready. By freeing up your emotional side, you can get down to the business of doing the work needed of medical appointments to stay current on staying healthy. I believe in you, and l believe you can do this.