BRCA Cancer gene - To Test or Not to Test?

[deleted account] ( 9 moms have responded )

I have a friend who has a strong family history of cancer, particularly breast cancer. Her mother recently died from ovarian cancer. Her physician suggested that she get tested for the BRCA cancer gene. Another friend's mom died of ovarian cancer and her mom's brother died of pancreatic cancer. During her last pregnancy, the genetic counselor strongly recommended that she be tested for BRCA mutations. She said that two rare cancers in a brother-sister pair of Scottish heritage was a clear indicator of a BRCA mutation. Her sister's physician has recommended the same for the same reasons.

For the sister, she chose not to get the test because, although it is illegal to discriminate against someone based on genetic information, she is worried that her health insurer would find some way to drop her coverage. She's also not sure what she would do if the test came back positive.

For my one friend, she is paralyzed by fear.

For my second friend, she will be tested at some point, but has the same insurance concerns as her sister.

If the test is positive for any of them, the recommendations are clear and drastic -- removal of their ovaries and breasts. Forced menopause. No more children. All three women are in their 30s. Also, knowledge comes with a price -- the certainty that you carry the gene and have a much, much higher risk of cancer.

To date, none of the women have been tested. What would you do? Would you want the test? Or would you not want to know?

9 Comments

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Tam - posted on 12/31/2011

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Pretty much what Sherri said. I saw a friend have to go through a hysterectomy due to cervical cancer and I know it was hard - she wanted children desperately, but hadn't had them yet. But rather than get pregnant and endure a high risk pregnancy while suffering cancer just for a baby, she opted to have the surgery. It was the reasoning that if she had kids, and the cancer grew too fast, she'd likely be dead before they could know her. If she became cancer free, she could adopt and share joy in the children of others. I respect her so much for that choice and I know it had to be hard for her. And I don't think I could do any less, in that light.

[deleted account]

I'm with Krista. I would get tested and I would have at least my ovaries removed. Probably my breasts, too. As hard as it would be to know, I'd rather know.

Krista - posted on 12/30/2011

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I would want to know. Yes, cancer CAN happen to any of us at any time, but there is a big difference between it possibly happening, and it being a definite probability.

I'd get tested, twice. And if both times it was positive, I'd have my breasts and ovaries removed without a second's hesitation.

[deleted account]

Looking at this from a purely selfish perspective, I would not have the test done. If I were single and carefree, living day to day, I wouldn't care to know that cancer was looming in my future.

Looking at it as a mother, who needs to live as long as possible for her family, I would feel obligated to take all necessary precautions so that I could remain there for my family and be as healthy as possible.

Jodi - posted on 12/28/2011

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I am still undecided. But this is a very real question both of our daughters will have to face because breast cancer is quite prevalent in my husband's side of the family in 2 generations at a young age (including his mother). So I am interested to read people's reasonings so that one day I can share some of the debate with my daughters.

Mrs. - posted on 12/28/2011

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Yes, yes, yes I would. I'd rather know now and take the risk with insurance, then take the precautions I needed.

Your health is the most important thing. I'd rather be broke and uninsured than dead...but that's just me.

I'd also rather know and deal with it in the present.

[deleted account]

No, I don't think I would. We are ALL at a great risk for cancer--I myself have fought it twice, both of my grandmothers fought it, 2 of my cousins passed away from it, 3 more cousins survived their battles, and I can't remember the aunts and uncles. I do have a very large family, but research shows that 1 in 3 people will be diagnosed with cancer in their lifetime--that percentage is about right for my family and most families I know.

The test gives no peace of mind at all, it will only give them more to worry about--even if it comes back negative for the mutation, that does not mean they will not get the cancers. They can still get it, so why bother?

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