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Living Under the BRCA2+ Cloud

It’s an unsettling feeling to be living under the BRCA2+ cloud – to be a member of the tainted gene pool club.

Most breast cancers are not directly linked to hereditary risk factors; rather most are considered to be sporadic. In fact, less than 10% are attributed to gene mutations. How did I land in this particular minority? I guess that would take some digging…

I remember when my mother learned she was BRCA2+. She felt bad about tarnishing my birthday with breast cancer, and then she felt bad all over again when she learned she had tarnished my genes as well. Not logical thinking, of course, but we women, perhaps especially mothers, are good at that guilt-trip thing.

And, of course, how could I forget the day I learned I am brca2+ as well? That was not a good day. No, it was not. 

I do not feel guilty about my tainted genes. That would be like feeling bad about who my parents were wouldn’t it?

However, there is a sort of cloud of gloom that comes with knowing you are BRCA+. The risk of developing cancer during your lifetime is pretty darn high. You know that old saying about the cards being stacked against you…

Suddenly one becomes keenly aware of risk for cancer that quite possibly, maybe even probably, is in one’s future.

It’s sort of like having that very bad forecast for a very bad potential storm down the road. It’s probably coming, you just don’t know exactly when or exactly how bad it will be. You do what you can to prepare, to survive.

And cancer is a very bad shitstorm that anyone would want to avoid if possible. So, I’m not one bit surprised that so many are choosing prophylactic measures to avoid it if at all possible. The cloud can be quite daunting. Again, you do what you can.

My family now lives under this cloud right along with me.

Do I worry about my children, siblings, nieces, nephews and other family members and their cancer risk?

Sure, I do.

Will they all get tested at some point for this mutation?

Probably. But that is up to each of them. 

Of course, even testing negative doesn’t remove that cloud. Once cancer has infiltrated your family’s inner circle, the dark cloud will always linger. Nor does testing positive for a gene mutation like BRCA 1 or 2 (and others) mean cancer is a sure thing for you, though it certainly darkens the sky.

Genetic testing is still not a crystal ball.

Hereditary cancer risk for some families is very real. We are making tremendous progress in figuring this stuff out, but there is still much to learn.

Perhaps one day the cloud of hereditary cancer risk will be lifted. And perhaps there will be better options for those trying to avoid the storm. ‘Cuz right now they sorta suck.

Until then, those of us living under this particular gray cloud will listen to the “forecasters”, decipher the information and prepare in the best ways we can.

Is there a dark “cloud” of any type in your family history?

Have you had genetic testing or would you consider it?

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Living under the brca2+ cloud #cancer #hereditarycancer #brca #breastcancer

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Ilene

Thursday 24th of September 2020

Nancy being of ashkenazic Jewish descent I am assumed BRCA positive but I’m not. Unfortunately genetic testing hasn’t come far enough yet to get at the mutation that caused me to present de novo stage 4 with level 5 breast density nearly six years ago. I do know there’s so ticking bomb that went off inside me as my father died of brain cancer and his mother, my beautiful grandmother died of metastatic breast cancer when I was only 5. She loved me so much - there’s very few photos of my life without her holding, playing, swimming, laughing, pushing me in a swing (apparently my favorite activity besides my ever replaced rocking horses I’d wear out like tires on a race car because I was too full of energy to sit still) but she kept up with me and you can see the love she has in her eyes. Since diagnosis I always wondered if she ever thought about passing her terminal illness via my father’s genes to me. I am sure she had. There’s one photo of her that stands out - it’s near her death she’s sitting in a club chair in a house dress (she was always dressed impeccably) holding a pole with an IV bag attached to one bed and the catheter to her hand. She looks exhausted as though life were just too much and too painful. You can visibly see the crease between her eyes. And in her other hand she holds a cigarette. The things we have had told us that slowly killed people before us...

Nancy

Friday 25th of September 2020

Ilene, Thank you for sharing about your grandmother. It sounds like she was wonderful and loved you so much. And that last photo of her that you mentioned, gosh, the stories photos tell, right? It sure was a shock finding out my family lives under this brca cloud. Knowledge is power, yes. But it can also be a burden.

Beth Gainer

Wednesday 20th of November 2013

Nancy, this post is so very moving. I'm so sorry that you have the BRCA2 cloud hanging over you. It's so difficult wondering if the cancer shoe is going to drop again. The most you can do -- the most anyone can do -- is enjoy life the best we can and be proactive in our health care. Take care, my friend.

Nancy

Thursday 21st of November 2013

Beth, You're absolutely right of course. As always, I appreciate your understanding and kind words. Thank you.

FacingCancer.ca

Thursday 14th of November 2013

I really appreciate that there are studies out there looking at other reasons women get cancer. BRCA is a big deal, and I can't help but wonder what other big deals might be discovered as we go. I'm living under the cloud of having had a diagnosis, and having no definite idea as to why it happened. Boo for that! (And Yay for more research like the HOW study) ~Catherine

Nancy

Friday 15th of November 2013

Catherine, It's pretty clear there is still an awful lot to figure out, yet another reason all the simplistic messaging going on needs to stop. Thanks for reading and commenting.

Mae

Thursday 14th of November 2013

I don't know the weight of such a diagnosis. I can only imagine it and wish you didn't have to know it so well. There are other genes yet to be discovered and with hope, cures are around the corner too. I had to add that last part! Hope… not such a bad thing for all of us!

Nancy

Thursday 14th of November 2013

Mae, Thank you for the kind words.

Elizabeth J.

Wednesday 13th of November 2013

I guess I have known for many years cancer was in my future, yet still hoped I would escape the "family curse." Both sides of my family have breast cancer. Both! On my dad's side, his sister had breast cancer twice, at 20 something and again in her 60s. Yet, she lived to 96. On my mother's side, both she and my grandmother had breast cancer. My mother's never returned. My grandmother died of breast cancer that had metastasized into her bones. Then there is me. Third generation in a row. Except mine was IBC. And now mine is in my bones, too. My grown daughters are terrified of breast cancer. Shortly after I was diagnosed, they both decided that they eventually "wanted their breasts hollowed out and falsies put in." They had never heard of prophylactic mastectomies, but that is what they decided to do when they get around 30. I was tested and I am BRCA negative. There have to be more genes than BRCA, because look at my family.

Nancy

Wednesday 13th of November 2013

Elizabeth, It's really incredible that both sides of your family have been so impacted. I think you're right about there being more genes... there are too many families like yours that are obviously dealing with hereditary factors. Thanks so much for reading and sharing.

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