GENE TESTING-IF YOU HAD IT DONE, DID IT AFFECT YOUR DECISION ON WHAT TO DO?

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sherryg
New Member


Date Joined Dec 2004
Total Posts : 19
   Posted 12/9/2004 4:49 PM (GMT -7)   
 Would like any input on this miracle of modern medicine. It sounds complicated. I have some info on it from my surgeon but I can learn more from people who have done this testing and see how it affected them..............Sherryg
 
                 
 
                    
 
 
  Psalms 91:4  "He shall cover thee with his feathers, and under his wings shalt thou trust: his truth shall be thy shield and armor".


barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 12/9/2004 5:58 PM (GMT -7)   
Had genetic testing, which was negative for BRCA-1 and -2.  I did find out a lot of interesting information from the experience.  For instance, a negative result is not a 100% assurance that you are, in fact, negative for the genes.  The computers that run the tests are set to look for common defects, but there could be abnormalities or anomalies that the computer doesn't recognize, but which would be a positive result. 
 
Also there are some genes, such as P-53, which there is no computerized test for, so they probably aren't going to test you for P-53 abnormalities unless you're in some type of study where a big pot of money is funding the research.  And yet P-53 defects are known to be prevalent in families with adenocarcinomas.
 
Even though I test negative, I firmly believe that there is a genetic component to my cancer, and the genetics counselors all agreed that they didn't know which side of my family was more suspicious-looking on paper.  They also agreed that, if there was anyone in the family they would want to test, it would be me. 
 
So the testing really did nothing for me as far as decision-making.  At the time of dx, I didn't want the testing done.  I had two very young daughters who didn't need a positive genetic test darkening their futures.  I chose to go through the testing many years later, when my brother was diagnosed with prostate cancer and both of my daughters, by that time, wanted to know if our family had one of "the genes."
 
Most of the information I got was beneficial to my girls, so it was worth it, in my estimation.
 
Hope I didn't just confuse you more!
 
Love and hugs...
BEV
 
 

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 12/9/2004 6:24 PM (GMT -7)   
Sherry, there is so much to consider here, it is just not as simple as getting a blood test. Like Bev said, they only can test for what they know exists. We have BRCA 1 and BRCA2...when will they find 3 or 4? I was diagnosed at 30 with no family history, but my ethnic background combined with my young age placed me at higher than average chance of having a mutated gene.

I read about it and asked my doctors and nurses. They advised me to wait on testing. In hindsight, I agree. There is soooo much going on now, you do not want to make a decision based on emotion alone.

If I had it to do over again, I would do it the same way. Waiting was a good thing, no sense adding to the confusion and decision making. I finished my chemo in APril, and went to a genetic counselor in October. I would highly recommend the counseling. You will learn the pros and cons to learning of a positive or negative test, you will learn how the information can or cannot be used in future, and they will give you an estimate on your chances of carrying a mutation.

Had I tested positive, I would have had bilateral mastectomies... but I was not prepared to do that at the time of initial treatment and diagnosis. There is time to do the testing and counseling later, it is a tremendous amount to go through right now.

My opinion is to wait. If you do a lumpectomy now, you can do a mast later. The size and grade of the tumor will dictate whether you have chemo, the genetic testing will not likely influence that.

Be careful of information overload.....take one step at a time. You may want to check out FORCE, a website devoted to genetic issues and cancer. i think it is FORCE.com.

Lori


veggievet
Regular Member


Date Joined Jul 2003
Total Posts : 58
   Posted 12/11/2004 3:51 AM (GMT -7)   

Dearest Sherry,

The best place to start to determine if genetic testing is right for you is to see an expert in cancer genetics called a genetic counselor.  Cancer genetics and hereditary cancer is a rapidly changing area, it's so important to get the most up-to-date information from the experts who are trained to give it--that's the genetic counselors.  You can find a genetic counselor through the website of the National Society of Genetic Counselors at:

http://www.nsgc.org

They won't try to talk you into or out of testing but will give you up-to-date facts about what is and is not known about BRCA testing and hereditary cancer.  The test itself is a blood test, and results take about a month.  You can learn more about hereditary cancer and genetic testing at FORCE: Facing Our Risk of Cancer Empowered at:

http://www.facingourrisk.org

Here is a link to a brochure by FORCE that discusses hereditary cancer and genetic testing at:

http://www.facingourrisk.org/publications/brochure604.pdf

I hope this helps.  On the FORCE message boards you can find hundreds of women who have asked the same questions as you have. 

Warm regards,

Sue


**********************************************
FORCE: Facing Our Risk of Cancer Empowered
for women at risk for hereditary breast and ovarian cancer
"Joining FORCEs against cancer"
**********************************************

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