• The boys and I

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    I’m 44, married and live in a sewerless small town on the central coast of California. I am an Inflammatory Breast Cancer survivor. My passions are reading, knowledge, shopping and photography – in varying order depending upon my mood. Though I’ve always wanted to be really good at something, I find that I’m just pretty good at most things. I live with my husband, Daddy-O, and our sons, Ben and Danny who are 10 and 5. Ben has ADHD and enough natural energy to power the Pacific Time Zone… and he’s not afraid to use it. Danny has Norries – a rare genetic disease causing him to be born blind. It’s a crazy, hectic life but I can’t complain any more than usual.
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Benefit or Burden

I love October.  Suddenly the bright spotlight of the media is shown on stories that normally don’t rate for their lack of warm fuzziness.

Take the Welsh’s from Ohio, for instance…  Both wife and husband are in their 60s and are undergoing Breast Cancer treatment.  Both. Of. Them. 

This is a subject near and dear to my heart as my boys have a significantly increased risk of developing breast cancer because I and my mother both carry the BRCA2 genetic mutation.  By significantly, I mean about 80 times that of other men!!!  This equates to about a 1 in 14 lifetime chance of breast cancer.  BRCA2 also increases the risk of other cancers: prostate, pancreatic and stomach cancers as well as melanoma.  Did they hit the genetic jackpot or what!? The BRCA2 gene DOUBLES a man’s chances of developing prostate cancer and melanoma!  My boys have a 1 in 3 chance of prostate cancer before they turn 65!  All of these cancers will rear their ugly heads earlier than typical in a BRCA2 man.

I have long been an advocate of Knowledge Is Power!  It’s only when we hide medical histories and facts in the dark because of embarrassment or fear that these awful diseases get the upper hand.  That being said, knowing my boys could be victims of genetic Russian Roulette, I have a decision to make.  Should I get them genetically tested?

My quandary is this:  genetic testing would arm all of us with the power of knowledge.  We could gird our sons against cancer with more frequent screenings at much younger ages.  Even enroll them in test programs aimed at prevention.  However, by equipping ourselves with this information we also make the results available to insurance companies.  If I test the boys as children in order to afford them the best possible chance at survival, do I label them with a giant red flag that will prevent them from ever getting health insurance?  Will it cause them employment issues in the future?

It’s such a tight rope to walk; future benefit or burden?  What would you do?

Cross posted to Mothers With Cancer


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