Advice about brca gene testing.

JenJill123

I am a 65 year old female. My preternal grand aunt (my fathers, mothers sister) and preternal aunt (fathers sister) died of breast cancer. My preternal aunts grand daughter was also diagnosed with breast cancer.

I get routine mammograms' yearly. Every time I get a mammogram, I am asked about my families breast cancer history and I am told that genetic counselling is suggested .

I have a 34 year old daughter and she is urging me to go get tested for the brca gene. My dilemma is that if my results come back and I have the brca gene what am I going to do with this information. I can't imagine choosing surgery to remove my breasts and ovaries. I am terrified and would not know how to deal with this. If I choose not to have surgery, what would I do differently to what I am currently doing (yearly mammograms.) How is knowing going to help me?

I am so confused about this and feel like avoiding the whole thing. Would really love to hear from others who have had to deal with this situation.

mountainmia

Hi JenJill. This is EXACTLY what genetic counseling is for. You don't have to get tested if you go for counseling. But you do get to speak with an expert about what you might find out, and how you might use that information, and what reasons you might have to not do it at all. I encourage you to go ahead and make an appointment. Make a list of questions for the person. You might start out by printing out what you wrote here, and then just jotting down other thoughts/questions about it.

They will probably want to take a "full" cancer history of your family, not just of the breast cancers but any others you can think of, too. It will help a lot if you have that all written down before your appointment.

Please go ahead and take advantage of this opportunity. I think you can learn a lot, and again, you don't actually have to get tested. Good luck, and let us know what you decide to do.

moderators

Hi JenJill123,

We understand your concerns. We have a large section on genetic testing and what it means for you and your family.

You may want to start here: Learning About Your Family Background

As well as Seeking Your Genetic Information: Pros and Cons

Here is our section on What to Do if Your Genetic Test Results Are Positive.

If your test results are positive, you'll have the opportunity to discuss options with a genetic counselor. In addition to preventative surgeries, there are hormonal treatments as well as more frequent cancer screenings that can be implemented (all explained on that page) if you should choose.

Knowing that you carry an abnormal gene linked to breast cancer risk may also prompt you and your family members to make lifestyle and family planning changes or other decisions that could help lower cancer risk.

It's a lot to take in, but well worth the conversation with a genetic counselor to get more information.

Genetic Counseling: How to Prepare and What to Expect

Ultimately, if you choose not to, perhaps your daughter could meet with a genetic counselor, and explain her concerns.

We hope that was helpful, and encourage you to look at the conversations going on here as well.

Warmly,

The Mods

salamandra

When I went for genetic counseling (decades ago) they explained that if I tested positive for BRCA, one option would be to do yearly MRI screening to hopefully catch any cancer early. Some women also take low doses of hormone blockers. You don't have to know what you would do with the information before getting the counseling - it's their job to tell you. Then you can make an informed decision about whether or not you want the test.

Also I wonder whether your daughter has been tested, and if not, if this is her way to maybe avoid it for herself. At her age, in some ways, her risk is more urgent than yours.

exbrnxgrl

Whether you are ultimately tested, your daughter or both, I think genetic counseling would be very helpful. It would allow you to fully understand the implications of any mutations that are found or help you understand what the implications of a paternal family history but negative genetic testing. Not only did I have a family history but I belong to an ethno/religious group with a higher than average incidence of BRCA genes. All my tests have been negative.I should also add that genetic testing covers far more than BRCA mutations.

alicebastable

I had genetic testing because I've had more than one kind of cancer, referred by my breast surgeon. The genetic counselor told me that only direct relatives are relevant: sibling, parent, grandparent, or aunt/uncle; maybe first cousin if their parent had cancer too. Anything beyond that has too many other non-relatives in their blood lines. And although I had close relatives with breast cancer (mother and paternal aunt), kidney cancer (father), and uterine cancer (maternal grandmother), nothing showed up on the genetic results. I'm glad I had the testing done, but it didn't give me any answers.

charlierun

I decided to get tested for a Brca2 at age 65 after my son learned that he was positive for the gene. It was really quite random that we discovered this because his genetic testing was done to determine the cause of his daughter’s genetic abnormalities . I have the BRCA2 gene mutation as does my son and unfortunately also my daughter just discovered that she has it too. She is in her 30s and has opted for increased surveillance.
I decided to go ahead to discover my BRCA2 status as I was quite concerned about ovarian cancer as a friend had recently passed away with that disease. When I discovered that I had the BRCA2 gene mutation several years ago I had my ovaries removed a year later. I’m relieved though that I didn’t know about my BRCA2 gene status until later in life as I was spared the anxiety of worrying all those years aboutwhether I will eventually get breast cancer . After much agonizing and research I have decided to have a PBMS with reconstruction but due to the pandemic that is now on hold. They say knowledge is power but it doesn’t come without an emotional cost . I am sure like most people I am fairly risk-adverse and I struggle with what scares me more, breast cancer and adverse effects of the treatment- chemo, radiation, etc. or complications of a mastectomy- long term pain, etc.