Benefit or Burden? by Stella

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 I Can’t Complain Any More Than Usual

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7 Responses to Benefit or Burden? by Stella

  1. donna4k says:

    It really &*bites that this potentially life saving information has to be debated in this way. Some would want this info and some may not but the blasted insurance cos. shouldn’t even be a blip on the radar regarding this decision..

  2. Jo Jo says:

    Although it is not always comforting to people, you should be aware that congress passed legislation last year called the Genetic Information Non-discrimination Act (GINA). It prohibits insurance companies from denying coverage or setting premiums based on genetic test results. Here is some info:

    http://www.genome.gov/24519851

    I also have BRCA2 and a young son who is 10. I am choosing not to test him at this time. Number one, I don’t know of any preventative actions he can take at this time – especially at his age. (Screenings at 10? Seems a bit dramatic.) Number two, the science is growing so rapidly that I’m hopeful it will be a moot issue by time he is old enough for it to really matter. And lastly – I don’t want him to carry the burden of fear if he has the gene. I’m afraid a blood test will call too much attention to the issue in his mind. He understands he could possibly carry the faulty gene – but we have played down the risks for men (vs. women) and haven’t told him all the risk factors that apply to him. As he grows older we will give him more information. Our response will change based on his reactions and we may make a decision to test. For now, we are letting it rest.

  3. Dianne Duffy says:

    I’m also BRCA 2 positive and have a daughter that is 18 and a son that is 17 years old. My insurance will not pay for testing of minors, but they will pay for genetic counselling. My daughter went in right after I was diagnosed. In our family, the women are all in their 40’s when they are diagnosed. The counselors told my daughter that even if she tested positive, she would not get any different treatment than if she was not, at least until age 25. Genetic cancers do not normally affect people younger than that (although a 14 year old friend died of ovarian cancer last year, hers was not genetically tested).

    Until she gets tested, she will be treated as if she was POSITIVE. At this point, the only thing testing would change, would be relief if she tested negative.
    So far she has chosen not to be tested (because she’s 18 now).

    My son will most likely not be tested until he wants to be married or have children of his own. He will also be treated as if he has already tested positive.

    By the way, I got my gene from my father who said that if he had known, he would have never had children.

    It’s a lot to think about, I know.

    Dianne Duffy

  4. Cancer is a horor disease.. Let’s fight it.

  5. tam says:

    im saddened to hear of the people who have suffered to this terrible disease but you are doing a wonderful job of raising awarness and making people understand just how we need to all help fight it. i hope to be able to help in anyway at some point not just donations in a tin, these stories make you realize how we must treasure the loved 1s and friends we have around us as life is precious and not to be taken for granted. May god bless u all and the people affected by it. I pray that gods help will get you thru these difficult tmes. tam x

  6. hello,

    thanks for the great quality of your blog, each time i come here, i’m amazed.

    black hattitude.

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