Benefits or Genetic Testing ???

I have had the testing, am BRCA 2+. I have no biological children so thats not an issue, but as far as the possibility that it may be distressing....well how can this whole thing NOT be distressing? But here is the difference: family history is family history. Genetics is developing rapidly and even though someone may test BRCA -, that doesn't mean the in 5 years there WILL be a mutation they test positive for. I was almost relieved that my test was positive because it was the confirmation I needed to go ahead with my choices of preventative surgery. I gew up with the information that I was high risk my whole life so getting it in writing didn't change a whole lot for me.

Your dd is only 18 and doesn't need to run out and have surgery- she can take her time, do her research. Who knows? Maybe she will benefit from other options that are being researched to prevent breast and ovarian cancer in cases like ours!

Another great resource is FORCE. Facingourrisk.org, and organization that is centered around hereditary breast and ovarian cancers. Good luck to all of you ....its not an easy journey at times.

I did not have genetic testing, but I did have genetic counseling. At most major institutions, they require genetic counseling before testing. I think it also helps to get a board-certified genetic counselor. They have met certain standards.



I opted not to get tested because they said I was at very low risk of a BRCA mutation. I was at a low risk for a very unusual genetic defect. I opted not to get tested for that either, because it is so rare. I had never heard of this defect, so it gave me much more confidence in their information.



I found genetic counseling very helpful even though I opted not to get tested.



Genetic counselors should not press you one way or another for or against testing. Board certified counselors should be trained in counseling too.



As others have said, they can usually estimate your risk of having a BRCA mutation (unless you don't know your family history, such as in the case of some adoptions.) They can also give you an idea about the latest for insurance implications of this, which may vary from state to state. I think there was a thread, maybe in this forum, where someone said that the military may be able to discriminate against people with a genetic defect. If this is a concern, you may want to ask before testing.

My mother went through the genetic counseling and testing after her treatments in 2002 because of strong family history. She tested negative.  She did it to help my sister and I decide if we needed testing. But since she was negative, I was not tested.

It is good that the test is available for those who want to know and helps decide on preventive treatment.

Sheila  

I also did the BRCA testing and was negative.  My docs recommended testing because:  1) I was 39 at diagnosis; 2) I am adopted and, therefore, have no family medical history; and 3) I have a history of significant endometriosis around my ovary making monitoring me for ovarian cancer difficult if I am at increased risk for it (which you are if you are BRCA positive).

I would suggest that you meet with a genetics counselor to talk through the test.  Some people don't want to know whether they are at increased risk for another bc or ovarian cancer.  Only you can decide whether the info will be useful to you or not.

Best wishes in your decision.

I, also, had the counseling and testing. I am awaiting results very soon as well. I have complete peace whatever the results reveal. I will better know my actual risk assessment, and be able to make appropriate preventative measures that are right for ME. I am not sure I was ready for this when I was dx'ed, but the Lord has given me His perfect peace regarding my life and its circumstances, for which I am thankful!! With Him, all things are possible!  

Hi, Sunflower.

I am brca2.  My grandmoterh, my aunt, my two sisters and three cousins had breast cancer.  I had my gene test after my sis tested positive (stage II cance5r started our family testing spree.  As a result of my brca2 positive, i had bilateral masectomy this last July.  Yesterday I had the final phase where they took out the tissue expanders and put in an implant. 

I have seen first hand how rough treatment is after findin bc.  I did want to have rad and chemo and a reduced life exectancy.  I also could not afford the time it would take for treatment once I developed cancer (85% risk of breast cancer).

A biopsy of my tissue after the masectomies showed lobular carcinoma in situ.  I was told that was not "cancer"but a 30% chance of it turniong in invasive cancer. 

I have felt GRATEFUL evey day since the masectomies.    I now have a 3% breast cancer risk as opposed to 85% plus 30%. 

As to the surgery, the masectomies were relativly easy (not as bad a a c-section)  As a matter of fact, I was back to work full time in a week and a half. 

Yesterday's surgery was so easy.  All I felt afterward was tired from the anestia.  Today, if I could drive, I would probably have gone into my office!!!! I am not enven taking pain killers.

I have beautiful breasts!! My surgeon kept the skin and nipple.  That is why my risk rate is so high at 3% lol. 

Everyone is so surprised at how wonderful I feel for having those old breasts and risks removed.  Good luck. 

Hi, I have a question...

I have DCIS, diagnosed a month ago.  I am 46yrs old.  I am ER/PR+ and HER2+.  I have NO family history of breast cancer, but had a son diagnosed with cancer at age 11yrs.  I have been contemplating wether to go with the lumpectomy/radiation, or have a mastectomy with reconstruction , and I know if I tested positive for BRCA1/BRCA2, I would go with the latter procedure.

MY QUESTION:  Based on my above info, should I go ahead and get the BRCA test?

Thanks,

Maureen 

Maureen, it sounds quite unlikely that you carry the BRCA genetic mutation.  There are cancers other than breast cancer that tend to be more prevalent in families with the BRCA gene but these are ovarian, prostate, possibly pancreatic, laryngeal, and stomach cancers, and melanoma.  I'm guessing that your son probably didn't have any of these, since they all tend to be rare for children. 

The best thing to do is to have your surgeon or your oncologist refer to you a genetic counsellor.  Talking to a counsellor doesn't commit you to taking the test, but the counsellor will be able to explain what a positive result would mean to you and your family and would be able to advise you on whether it's likely that you may test positive.

Good luck!

I just tested positive for BRCA2.  There is no family history, but my doctor suggested it because of my age of onset of BC (41).  Now my parents and siblings will get the test- in fact my sister is there today.  My genetic counselor said my children cannot be tested until they are 18 and can consent.  I worry about them, but I hope that by the time my daughter is of age, we will have better detection and treament methods.

I have read that young adults feel better for having been tested regardless of the results.  So maybe knowing is better than not knowing.  My genetic counselor said that if my daughter were to test positive, and there is a 50/50 chance of her inheriting the gene, he would encourage her to finish her family by age 35 and then remove her ovaries.  She's only ten, so I don't plan on telling her anything for quite a while.

Good luck to all of you!

Mary

I am getting the BRCA1/2 testing this week due to alot of family history of cancer (grandmother, mother, uncle, niece). If it is positive I will absolutely get a bilateral masectomy. My breast surgeon says if it's positive I should have my ovaries removed too. But I wanted to have one more child desperately before doing that. 

This kind of information IMHO is so critical. Your daughter, if tested positive, may choose to have children earlier or may choose not to have children at all. She may choose to have a masectomy early or to have her eggs frozen. These choices are available to her but maybe now only with information about her genetics.

I am BRCA 1 and also Ashkenazi Jew. I was diagnosed the first time at age 32 and now at age 44. My grandmother had bc (jewish) my mother would have had the gene but passed away from lung cancer. She never got bc. My sister does not have the gene.

My daughters are now 21 and 17. I am leaving it up to them whether they want to be tested or not. They already know they should be vigilant with their breast exams because of me. My oldest will start ultrasounds or MRIs this year. They're not going to have their ovaries removed as they want to have kids. So at this age, what will knowing do?

I was tested for my sister as we did not have the definite connection to my grandmother's bc since she died when I was 5. We know the gene came from her side which meant my mom had it but still didn't develop it. Although she did develop the form of lung cancer that non-smokers get .  Hopefully my girls will have their father's gene like my sister had my father's.

Sharon

Breast cancer news for BRCA genetic carriers.

http://www.medicalnewstoday.com/articles/93404.php