BRCA for Dummies and The Teenage Mutant Ninja Turtles

Courtesy of crazy-frankenstein.com

 

Ask anyone who is BRCA positive if they’ve had difficulty explaining their situation to others and they will scream a very loud YES in response. The learning curve surrounding the HBOC Syndrome (Hereditary Breast and Ovarian Cancer) is steep. The choices are complex and nuanced. No two individuals are alike and much depends on deeply personal choices. It ain’t easy being a mutant.

At the end of the process of screening, counseling, doing the test, receiving results and discussions with a gaggle of medical professionals, there comes a point where patients realize there are three main areas to consider in making decisions about the management of a defective BRCA gene:

Increased Screening (catch that cancer early)

Chemoprevention (fiddle with hormones that influence cancer)

Surgery (beat cancer to the punch)

A gross oversimplification of the options, yes. That is exactly what I want. An easy way to define the salient features of this biological dilemma and how to deal with it. An elevator speech that outlines BRCA in under a minute. A tutorial my dry cleaner, hairdresser or a casual acquaintance would understand.

For BRCA folks like me who have already gone toe-to-toe with cancer and lived to tell, the content of this elevator speech is not the same as someone like my sister who has never had cancer. Survivors differ from Previvors, the term given to those who have the genetic disorder but have not yet been diagnosed with cancer.

I’ve passed the first surgical hurdle in my BRCA travels – bilateral mastectomy with immediate reconstruction. More surgery lies ahead. My elevator speech will keep changing, along with my body. The elevator speech is only one of many communication tools that would benefit the BRCA community. The fact is, a genetic disorder like BRCA affects relationships at every level and patients suffer greatly as they grapple with painful, life-altering decisions and then attempt to inform, educate or persuade others who are often skeptical as well as ignorant.

Once I’m done with the elevator speech, the next chapter in BRCA for Dummies will be “How to Deal With Morons.” It will include snappy retorts to ridiculous comments like:

“Oh, you’re exaggerating. Everyone has to die from something.”

“Can you get medical marijuana for that?”

“It’s all up to the man upstairs anyway, isn’t it?”

Those teenage mutant ninja turtle dudes probably had the right idea. Do the best you can with the hand you’re dealt, fight for what’s right, and eat lots of pizza. The world can always use a few more cool mutants like those guys. Forget the BRCA for Dummies idea. Give me some Turtle Power!

2 comments on “BRCA for Dummies and The Teenage Mutant Ninja Turtles

  1. tawnia says:

    This article touched me. Thanks for writing. Looking forwsrd to reading more.

  2. geneticgrrl says:

    There can be a lot of resistance from others to BRCA-positive people like you and I making ‘drastic’ decisions. One of the recurring questions I faced in the last few weeks before my bilateral mastectomy (with immediate reconstruction), and even in the days after it, went something like this: “Did the doctors support you in this decision?” Hmmm. I live in a country where health care is free at the point of use (because we fund it collectively via income tax) and what this means is that I would not have been allowed to have this operation at taxpayers’ expense (including my own, since I pay tax!) if the doctors hadn’t agreed it was a clinically-wise decision.

    But I tended not to explain all of this in response to these questions. What I usually said was: “If I had made the opposite decision, and decided against surgery, the doctors would have been concerned and they would have raised the issue with me again and again.”

    That’s the truth. My bet is that once a year, the option would have been presented to me…again. Why? Because they can read my family history and genetic profile as well as I can.

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