Genetic Testing

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Teresa A
New Member


Date Joined Jun 2006
Total Posts : 5
   Posted 10/3/2006 4:22 PM (GMT -7)   
I am new here, this is my first post.  My mother was diagnosed with dcis in 2000 (pre-menopause at age 42) with calcifications to the other breast.  She opted for a mast. on both sides.  I also have an aunt that had breast cancer, another with ovarian cancer, and one with cervical cancer.  I was wondering if anyone here has had genetic testing?  I don't think it is something my insurance would cover and I am concerned about the cost.  I had my first mammogram this year and it was fine (I'm 31).  I would love to hear from anyone that has had experience with genetic testing.  Thanks,
Teresa

Lmmackey
Regular Member


Date Joined Mar 2005
Total Posts : 316
   Posted 10/4/2006 6:33 AM (GMT -7)   
Hi Teresa,

I'm sorry to hear about so much cancer in your family. You are wise to consider genetic testing.

I was eligible for genetic testing because I was dx with bc at age 40, I'm now 42. While undergoing the testing, counseling is involved. The counselor talked about how if I were to test positive, she thought my insurance company would pay to have my children done. Perhaps your mother's insurance would cover you. However, given your history, I would see ifyou could meet with a genetic counselor at an oncologist's office and have him/her look into whether you would be eligible under your insurance plan. There are now laws that require genetic testing when a certain number of close relatives are involved and the insurance companies are required to pay.

I wish you the best of luck! Be diligent about your mammograms, and keep in touch!!!

Laure'
The finger of God touches your life when you make a friend.
----Mary Dawson Hughes---


Brnadebt
Veteran Member


Date Joined Jul 2005
Total Posts : 688
   Posted 10/4/2006 9:25 AM (GMT -7)   
Hi Teresa
 
I just had the genetic testing done a couple of months ago. I did it mainly because I have a strong family history of cancer and I have 5 sisters. The cost to my insurance company was $3,000 but it only costs my sisters $300. I tested negative which is good, but I still have the chance of a reccurance. My Dr does not want people who have already had cancer to put too much stock into the test because you still have a chance of it coming back even if you test negative.
 
I would have a tough time telling you weather to get the test or not. We have had others that have had the test that will probably give you advice too. One of our ladies about the same age as you are tested positive and then had a massectomy for prevention. It is alot to think about, such as what would you do if you tested positive. I would give it alot of thought.
 
L&H
Bernadette

Teresa A
New Member


Date Joined Jun 2006
Total Posts : 5
   Posted 10/4/2006 5:26 PM (GMT -7)   
Thank you for your replies!  I called my insurance company today and they do cover genetic testing in some instances.  I will have to see my doctor first to get referred.  I would consider getting a mastectomy as a preventative measure as well.  After watching my mom go through hell I will do just about anything to avoid that.  Thanks again,
Teresa

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 10/5/2006 1:14 PM (GMT -7)   
You could just have genetic counseling first.  They would review your family history and tell you if they considered you a good candidate for genetic testing.  They would also tell you who in your family is the best candidate for the testing.  I waited a number of years after diagnosis before undergoing testing.  Even though I had lost my mother and three aunts to cancer, my daughters were young and I didn't want them growing up knowing they were likely to develop cancer themselves.  But when my brother was diagnosed with prostate cancer, I talked to my daughters (grown my then), and they both wanted me to have the testing done.  The geneticists considered me the best candidate in our damaged tree for testing, so I had the tests for BRCA I and II, and both were negative. Had I been positive, my children and niece and nephew would have been much easier to test, because they would have known specifically where to look for the genetic markers, based on my test, ergo, their testing would have been much less expensive.
 
A negative test is not a guarantee that you do not have a genetic marker for breast cancer.  There are other genes that are closely related to breast cancer that can be tested, but aren't done by computer, so they are cost prohibitive to test for (P53, for example).  Also, the mutation may be so extreme that the computers don't "read" it as an abnormality (computers can only look for something they are programmed to look for).
 
Because you have not actually been diagnosed, your mother may be the best candidate for testing.  But that is what genetic counseling is all about, and it is relatively inexpensive.
 
Good luck.  (How is your mother doing, by the way???)
 
BEV

Teresa A
New Member


Date Joined Jun 2006
Total Posts : 5
   Posted 10/5/2006 3:55 PM (GMT -7)   

Bev, Thanks so much for your response.  I hadn't thought of that.  My mom is doing great!  She has hit her 6 year mark and is healthy and cancer free.  I am going to look for a genetic counselor tomorrow.  Thanks again!

Teresa


DANIE
Regular Member


Date Joined Aug 2006
Total Posts : 321
   Posted 10/6/2006 9:34 AM (GMT -7)   
Teresa,
My mom had ovarian cancer at 50 and breast cancer at 84 (she's still alive and doing really well at 87) and I decided to have the genetic test last year. Unfortunately I was positive for BRCA2. My brother did not go for testing but his daughter did (27 yrs old) and unfortunately she is also positive. I am in the process of having my dad tested now (there's pancreatic cancer in his family) and if he is negative then we know it comes from my mom.
I'm tested a few times a yr with mammo/dilon scan (a form of mammo but no x-rays)/breast mri/ultrasounds. Next year I will get a digital mammography instead of a regular one, it's apparently more precise.
I am aware of the prophylactic mastectomies but everyone around me is horrified at the thought I would actually do it. My insurance would pay for it since it's cost effective. Apparently cancer/chemo costs more than $400,000 per patient!!
Good luck to everyone, let's hope there is something on the horizon for all of us. There might be something in about 10 yrs but who knows!

Teresa A
New Member


Date Joined Jun 2006
Total Posts : 5
   Posted 10/6/2006 4:05 PM (GMT -7)   
Danie, Thanks for sharing your experience with me. Do you feel better knowing, or is it worse? I think I will feel better knowing, that way I can make sure to get proper care.

DANIE
Regular Member


Date Joined Aug 2006
Total Posts : 321
   Posted 10/10/2006 8:09 PM (GMT -7)   

Teresa,  I definitely feel better knowing since I have some control over any potential cancer.  I am tested regularly and hopefully, if anything develops, it will be caught in time to save my life. 

 I actually had the test before I spoke to a genetic counselor, sort of did it backwards!  When I finally did meet with her she told me that many people never go on to the testing part after they meet with her.  I think that people have it all wrong, in the near future your annual physical will be just a blood test for regular screening and genetic mutations.   We are lucky to be alive now with science progressing so quickly and having all the great non invasive technology available to us.    

My niece, who is also positive, is a molecular biologist and she told me that I may have saved her life.  Since she's in that field, she obviously understands precisely how important it is to have this information. 

 

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