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kosherbride [userpic]
getting tested
by kosherbride (kosherbride)
at October 20th, 2007 (10:46 pm)

In the last 4 months my mother and maternal grandmother have been diagnosed with breast cancer, the past 2 years both my mother and her sister have had major hysterectomies because of tumors found.

Should I get gene tested? I am recently married, 23 years old and want to begin having children in the next few years.

Aside from dealing with these family health issues, I'm grappling with the decision to get tested at all. It's clear I have a family history and I will be vigilant for the rest of my life. I keep weighing the pros and cons and just can't come to a decision.

My Questions:

How much does the test cost? Does insurance pay for it? If I do in fact have the gene, does this help me deal with insurance issues? (advanced screening, etc) Also- I have been on Ortho-tricyclen and Ortho-lo for nearly 5 years. I was planning to get off of it in the next year or so, but should I get off the pill sooner?

I'm planning to make an appointment with an OBGYN, I'd just like to hear what actual people have to say. Thanks so much

Comments

Posted by: boring (karinny)
Posted at: October 21st, 2007 03:28 pm (UTC)

I'm not sure what the cost is, it probably depends on your exact insurance coverage. *should* you get tested? that's up to you. YOu have a strong family history, so you're *going* to be vigilant. The way I looked at it, I was testing to see if I *didn't* have the gene... family history dictated that I needed to be cautious, but there was that glowing 50% chance that I didn't have the gene I had always assumed was present in my body. Turns out I'm positive, but really, that's ok. It meant that nothing changed in the way I was monitoring my body.

Looking at the possibilibty of children, if you *know* your gene status, it can help them - if you have it, they'll have a 50% chance of carrying it, if you know for a fact that you don't have it, then they won't either (assuming your husband is negative - I inherited the gene from my dad). Personally, I don't think that carrying the BRCA genes will discourage me from having children - given the way medicine is changing, there will be many more treatment options available to them *if* they even get the gene from me. At the same time, I know my dad has been having a lot of guilt issues stemming from the fact that I inherited this from him. The fact that the gene wasn't even isolated, let alone having a test developed until many years after I was born doesn't change that for him. But... if he hadn't been tested, and told me his status, I never would have gotten tested myself, just assumed that I had a higher risk based on family history. I'm glad I know my status... knowledge is power and all that :)

As to the birth control, if you're planning on having kids, sooner is probably better than later - I've had several friends who were unable to get pregnant for years after coming off of BC (this was before the "low" variety, though) That has nothing to do with any possible cancer risks, just something I've observed.

Posted by: kosherbride (kosherbride)
Posted at: October 23rd, 2007 12:51 am (UTC)

thanks for taking the time to answer my questions, it helps to hear the opinions of those who are going through it

Posted by: roadrunnerdm (roadrunnerdm)
Posted at: November 13th, 2007 10:32 pm (UTC)

Sorry for the late response. I hope you'll let us know what decision you make on the subject.

If no one else in your family has ever been tested for the gene, it can be expensive. Not sure what the current figures are, but for my sister it was above $1000 back about 5 years ago. Because she tested positive, others in our family (including me) have been able to get tested under our established family case for about $300. Whether that can be covered to any degree by insurance depends entirely upon your insurance plan, but if your doctor agrees that it's a prudent measure he/she may be able to help get it cleared for coverage.

If you do have the gene, then certain diagnostic tests and/or preventive therapies may also be covered by insurance more readily than they would without a positive test result...but again, this depends upon your insurance plan. In my own case, I was able to undergo a breast-focused ultra-sound and MRI that was entirely covered by insurance rather than just the typical mammogram. Regular blood tests and ultra-sounds for ovarian cancer screening would also be considered recommended. Best recommendation is to find a doctor who is fully informed on the implications of BRCA1/BRCA2 and who will pursue getting any and all screenings that are appropriate.

As for methods of birth control...that's a very personal choice that you should discuss with your OBGYN, but I do recommend that you keep in mind that the pill can significantly increase your risk of cancer over time, and if you carry the gene, your risk will already be very high.

It's not an easy choice to make, but I can definitely tell you that I have never for one moment regretted getting tested. Being informed about our risks may very well have saved both my life and my sister's life. Women have been dying of breast and ovarian cancer in my family for many generations...but now, because of the test, no woman in my family will be caught off guard by these diseases ever again.

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