Monday, August 8, 2011

"Welcome to Our Ool"

When I was in 5th grade, my best friend was an Israeli girl named Sigal. This was because in 5th grade, no one else in my class was willing to admit publicly that they were my friend. Hell, that was the status quo until we graduated 8th grade. I think some of them may be willing to admit that they were my friend, now, but back then, no way. You'd be branded a freak. A mutant.

I'm certain Sigal was the only one who was willing to admit it because she didn't know any better about the the fact that the stigma of being friends with the "corroded" girl would mark you for life. Then again, Sigal transferred out the next year, so she went relatively unscathed by being my friend, socially.

As a result, I went to her house for what seemed to be a daily play date. Her mom would make us falafel and chips (which, for years, I thought she made from scratch until I went to Israel and stayed with them for a free shabbat when I was 18 and I learned that her mom's falafel, in fact, came out of a box). And in the backyard, they had a pool. With this sign:

Unfortunately, it seems that my ancestral gene pool did not share the same philosophy as Sigal's backyard pool. And it would appear that it is my father's side of the family that subsequently peed in it.

Today, I got my genetic testing results. This testing determines whether or not my breast cancer is a hereditary trait, and if the possibility of recurrence as well as developing a slew of other fun cancers is greater than the average Joe.

Now, genetically speaking, I'm a mutt. On my mother's side, we have non-Jewish German (my grandmother, remember, converted to Judaism) and Russian Jewish. But no family history of breast cancer.

On my father's side, we have primarily Spanish-Portuguese Jews, and that had been the case for hundreds of years, until my grandfather decided to marry a German Jew. He was the black sheep of the family, I understand that family members stopped communicating with him as a result. This was a huge insult - to stray from the Spanish-Portuguese community. And who knew? His future generations would pay the consequences of his hereditary betrayal. It is his side of the family that has the history of breast cancer, seemingly, from my father's mother's side of the family.

I'm BRCA2 positive for a deleterious mutation, which means that gene that should safeguard my body against these kinds of cancers is broken. Defective. Yes, it's now official - I'm a mutant. Only this mutation doesn't qualify me to be one of the X-Men nor a member of the Brotherhood of Mutants.

It's a genetic tattoo. I've been branded "6174deIT," like a tattoo on the inside of my arm. Despite the Sephardi lineage, genetically, I'm an Ashkenazi Jew with a death sentence. I've been put into that line out of the cancer cattle car. The question is, what is my out? How do I escape? And how do I save my children?

Here are the "choices" I get to make, and the fates I've damned my children to. Call me Sophie:
  • If I do not have a bi-lateral mastectomy, I have a 12% risk of a breast cancer recurrence within 5 years of the first.
  • It is recommended that I have my ovaries removed ASAP, preferably by age 40, and without question, by age 45 as I have a 27% risk of ovarian cancer by age 70 if I do not have them removed. And there is no real way to screen for ovarian cancer until it is well developed.
  • I have a 7% risk of pancreatic cancer by age 80, though, if there is pancreatic cancer in my family history, which will be tough to prove as many were lost before we could find out, that risk can be higher.
Therefore, while I haven't consulting my surgeon, the most logical, detached choice I have is radical, bilateral mastectomy and having my ovaries removed within the next few years.

And now, onto my children's choices. By age 20, they should be genetically tested and then they begin the roller-coaster.
  • For my daughter:
    • She has an 84% risk of breast cancer, as well as all my risks.
    • She will have mammograms done annually from between ages 20-25 for the rest of her life.
    • She'll be presented with the option, at an ungodly age, to consider a voluntary double mastectomy.
    • She'll be asked to take our family history into consideration when it comes to the age at which she wants to start a family - she will likely not have the luxury of deciding to wait until she's in her 30s without taking serious precautions, as by 40-45, she will likely be told she should have her ovaries removed.
  • For my son:
    • He has up to an 8% risk of male breast cancer.
    • He will have to have breast exams starting between ages 20 and 25.
    • He has a 20% risk of prostate cancer by age 80.
    • He has an increased chance of contracting other cancers.
I'm a Sephardi trapped in an Ashkenazi body. And a mutated one at that. And what's worse is that I've likely passed on this tainted genetic legacy onto my innocent children.

What have I done?


  1. {{HUGS}} YOU haven't done anything. This is not your fault and I know you know that. {{HUGS}}

  2. Ahh, well. The question isn't really, "What have I done?" The question is, "What do I do now?" Wishing you all the best figuring out your future - belated thought it may be, you have a lot of knowledge at your disposal now - and knowing is half the battle. Or so I've heard.

  3. Sometimes I wonder if there is such a thing as too much knowledge?

  4. What you've done: You've shown your kids what it means to be brave. You are (and will continue to) teach them the importance of monitoring your health without being imprisoned by fear. And you are demonstrating response-ability, that they have the ability to choose their response to setbacks (i.e. participating in the Livestrong Challenge). Godspeed.

  5. cheeeeeeeeeeeeeese is gooooooooooooooddddd


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