Genetic Testing

[sajmellon]

What are the benefits vs. downfall to genetic testing. Three of the six sisters in my family have breast cancer. One just passed away. The other two were both diagnosed with stage I. The clinics do not seem interested in testing you unless you are positive for the cancer. The one sister with cancer wants her ovaries removed-but the surgeon won't remove them without genetic testing. This does not make sense because cancer is cancer. Why let the ugly disease spread? So, the other three of us without cancer get to sit and wait in limbo until we get a positive mamogram (mammogram). Is this right-or should we be seeking other surgeons, or will the outcome be the same. I am not asking for surgery-but I also do not want to die of cancer. Any suggestions at this point would be helpful!

[JeanneG]

I'm so sorry for your loss, and wish your two sisters going through treatment now strength and courage.  

Last May, at 41 years old, I was diagnosed with DCIS (non-invasive, stage 0 breast cancer).  I chose a bilateral mastectomy with immediate reconstruction instead of lumpectomy and radiation.  I wanted the most aggressive treatment since I'm a mom to 2 young children, one with special needs.  I did not have a history of breast cancer in my family; however, I was offered the genetic testing for BRCA1 and BRCA2 genes -- mutations that have been associated with breast and ovarian cancer.  My oncologist, not surgeon, ordered the tests.  We also met with the genetic counselor at my oncologists office who took a family health history, and calculated my risk for other cancers.  Fortunately, my test results came back negative for the gene mutations.  At the cancer center here in Denver, I believe it is standard to offer the genetic testing to women with breast cancer and recommend removal of ovaries/hysterectomy if it's positive.  That happened to a friend of mine.  She had decided on lumpectomy, but then had the genetic testing which showed she was a carrier.  She then decided on mastectomy and hysterectomy.

I remember that my oncologist said that now that I've had a breast cancer that my sister, mother and daughter have a 50% higher risk of getting one as well.  

The only downfall I can see for genetic testing is the cost.  It's very expensive, but insurance usually picks up the cost.  Here's the lab that did my testing... Myriad Labs in UT http://www.myriad.com/products/bracanalysis.php  Their website should have more information for you.

I suggest that your sister interested in removing her ovaries have the test.  Then if she's positive, it's a case for you and your other sisters to get tested.  Many women that have the gene mutations -- without breast cancer -- opt for preventative mastectomy.  At the very least, you have a strong history in your family and could make the case for annual MRIs with your mammograms.  MRIs have been found to be better at finding early cancers in high risk women.

Best of luck to you and your family.  Please contact me if you have any other questions.
Jeanne  

[sajmellon]

Thanks for the insight! It will be a long road ahead. The physicians in my area are aggressive, it is unfortunate that the physicians in my sisters area are not. The three of us need to get our physicians to schedule an MRI for us. Genetic testing will cost over $3000-which in my opinion is too costly! Isn't there aide from the cancer society or something? One would think the insurance companies would rather pay for preventative maint. rather than the whole cancer treatment stuff. Thanks for the support!