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Living Under the BRCA Positive Cloud

November is a month of transitions. In my little corner of the world, it generally gets chillier with each passing day. Daylight decreases. A lot. Skies seem grayer. Weather forecasters start inserting into their forecasts words like freezing rain, snow flurries,  weather advisories and sometimes even winter storm warnings. All those gray clouds remind me of a different sort of cloud I’ve been living under for a relatively short time, the BRCA2 positive cloud.

It’s an odd feeling  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 BRCA1 and 2 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 positive. 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 positive as well? That was not a good day.

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 positive. 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 shit storm that anyone would want to avoid traveling through 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 and their cancer risk?

Sure I do.

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

Probably. This is how we will “keep our eyes to the sky”.

But 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 mean cancer is a sure thing for you, though it certainly darkens the sky.

No, genetic testing is still not a crystal ball.

Hereditary cancer risk for some families is very real, BRCA positive or not. 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.

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 that 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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Do you live under a “cloud” of any kind?

 

 

14 thoughts to “Living Under the BRCA Positive Cloud”

  1. Thinking of you, Nancy. At least you know now, but it’s still tough. It’s all tough, and just when you think you’ve accepted things, a whole new layer of toughness arrives and knocks you sideways all over again. Here’s hoping the rest of the week is kind to you. Yvonne xx

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  2. I’ve lived under a cancer cloud since I was 13. That’s when my mother died of ovarian cancer. Two yrs. later her sister dies of cancer. My mother didn’t even get to know her mother, because she died from bc when my mom was only 7 mths. old. Cancer is whispered about in the family. I overhear them whispering about all the cancer in the family and I hear that some Dr. wrote about my mom’s family in a medical journal. By now I’m a teenager and I’m interested and curious. I start reading and learning that some cancers are hereditary. All I can do about it at this point is talk with my Ob/Gyn and express my fears. Oh, almost forgot, had my ovaries removed when I was finished with having children. There are no genetic tests in the world yet. I get mammograms faithfully and wait.
    2001 is here, my sister has had bc for the second time while her oldest daughter is diagnosed with bc. They both are TNBC and both undergoing chemo, although in two different states. BRCA testing is now available and four of us get tested. Three are positive, I’m the only negative result. I’m confused as I’ve been having several breast biopsies starting at age 16. I’m happy for my children, but I feel guilty about the negative result. 2009, I’m diagnosed with Leukemia. Leukemia??? I’ve always known I’d have cancer. Now I know what my monster looks like, I can now stop looking over my shoulder.

    1. Robin, Your family history is quite stunning. That’s quite a cloud you’ve been living under for a very long time. Feeling guilty when you tested negative, that’s interesting and understandable too. And then along comes your leukemia diagnosis as cancer rears its ugly head again for you. I’m sorry. Thanks for reading and taking time to share. Hope you’re doing alright now.

  3. 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.

    1. 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.

  4. 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!

  5. 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

    1. 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.

  6. 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.

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