Anyone had genetic testing done?

Yes, I was tested for BRAC-1 and 2, because of my Jewish Ashkenazi ancestry. It costs about $400.00 (at least for the test run by Dana Farber in Boston)...my insurance company covered the expense. Thank g-d I was negative! I am very glad I had it done, but it's not for everyone. They should have you meet with a genetic counselor before you go ahead with it, so you can understand all the implications beforehand. Best of luck with whatever you decide to do. It's not an easy decision.
Sheri

nancys said:

Sherri, Please post again and tell me what is involved in the BRAC 1&2 testing that you had. I have a 34 year old daughter and I also am worried about her. The counseling you mentioned is needed in case the tests are positive, no doubt. These tests are somewhat new and I wonder if any studies have been done about how accurate they are. I'll be watching for your reply, Your Friend, Nancys

Hi Nancy,
I got this done at Dana-Farber in Boston. There is a geneticist (who is also an oncologist) who is considered expert in this field, Dr. Judy Garber. I was supposed to meet with the genetic counselor prior to Dr. Garber, but that appointment got cancelled (long story). The reason they want you to have the counseling first is to understand the implications of the testing....for you and your family. They also have you fill out risk assessment questionnaires and send the medical histories of your relatives who have had certain cancers. They are very thorough! When I met with Dr. Garber she explained the risk that I had the mutation (10%) and what it meant if I did have the mutation. I decided to go ahead with the test. It is a blood test. I got the distinct impression that the testing is VERY accurate...they know where on the DNA this mutation lies, so they do know what they are looking for. However, they did tell me that there is also a possibility that there is some other genetic mutation that caused my cancer...given my family history, they think this is highly unlikely. There is also some further testing they can run for some other (even rarer) mutation seem among Jewish women of eastern European descent, but again, they don't feel it is likely or warranted in my case. If you have other questions, please ask! I hope this was helpful.
Sheri

sherij said:

Hi Nancy,
I got this done at Dana-Farber in Boston. There is a geneticist (who is also an oncologist) who is considered expert in this field, Dr. Judy Garber. I was supposed to meet with the genetic counselor prior to Dr. Garber, but that appointment got cancelled (long story). The reason they want you to have the counseling first is to understand the implications of the testing....for you and your family. They also have you fill out risk assessment questionnaires and send the medical histories of your relatives who have had certain cancers. They are very thorough! When I met with Dr. Garber she explained the risk that I had the mutation (10%) and what it meant if I did have the mutation. I decided to go ahead with the test. It is a blood test. I got the distinct impression that the testing is VERY accurate...they know where on the DNA this mutation lies, so they do know what they are looking for. However, they did tell me that there is also a possibility that there is some other genetic mutation that caused my cancer...given my family history, they think this is highly unlikely. There is also some further testing they can run for some other (even rarer) mutation seem among Jewish women of eastern European descent, but again, they don't feel it is likely or warranted in my case. If you have other questions, please ask! I hope this was helpful.
Sheri

I am 34 years old and have had reoccuring breast cancer. I was first diagnosed when I was 31 years old. My doctor wanted me to think about having the genetic testing done also. There is really no history of breast cancer in my family. My dad died of cancer, but not sure what kind. He was pretty much ate up with it when they found it. Also, I have a great aunt that had breast cancer about 25 years ago. Her breast was removed and that was the end of it. I have a 10 year old son, should I get this testing done for his sake? Would it help him in some way? For myself, I'm not sure, but for my son, I would do anything. I'm planning on having a hysterectomy reguardless of whether I have testing done or not. Some friendly advice would be appreciated. I'm due for my 3 month check up in March. Thanks, Nelda

sherij said:

Yes, I was tested for BRAC-1 and 2, because of my Jewish Ashkenazi ancestry. It costs about $400.00 (at least for the test run by Dana Farber in Boston)...my insurance company covered the expense. Thank g-d I was negative! I am very glad I had it done, but it's not for everyone. They should have you meet with a genetic counselor before you go ahead with it, so you can understand all the implications beforehand. Best of luck with whatever you decide to do. It's not an easy decision.
Sheri

Thanks for the info; I am considering having it done.

Genetic testing
Hi Jackie,

I too had the genetic testing done. Apparently, my insurance must have covered it because it was done a year ago and we never receive a bill for it. (We have since changed insurance and so we don't recall seeing it on the EOB either.) It is simply a blood test but they do require the genetic counseling talk prior to having it done as well as being told the results in person so that they can answer any questions you may have. I too have a lot of cancer in my family (breast, pancreatic, and colon). I have my maternal grandmother, 2 first cousins, a sister and myself that have been diagnosed in our 40's. I wanted to know my results in order for my daughter to be able to better prepare for the future. They say 90-95% (chemo brain and can't remember exactly) of those that get breast cancer are negative for the BRCA 1 and BRCA2 genes. I was negative and I know that another cousin with abnormal mammograms is negative as well. To me, this tells me that there are a lot of things yet to be discovered. They do know that there are other factors and probably other genes that there effects on breast cancer are currently unknown. So unfortunately, this doesn't really help my daughter but at least the gene is negative so the other known links (GYN cancers) may not be an issue. (We do not have any GYN cancer in the family.)

I know that some people do not want to know and would have more difficulty dealing with things if they did know but for me, I like to have as much information as I can so that I can do all that I can to prepare for things.

Good luck and God bless!
Rita

testing
I had it done and talked with my insurance company before it was done to have it preauthorized. There is only one company that does the testing so the was a bit of discussion if that would be "in" network or "out of" network. I haven't gotten the bill so I'm not sure what it's going to cost but I decided that I wanted to know: I have 2 daughters and a granddaughter. I'm negative. As someone else said, it's a blood test. Some rather serious paperwork and I had to make sure that I stated that my mother had BC and a first cousin had ovarian cancer to get it covered by insurance.

Maureen

CR1954 said:

I was wondering......
I was wondering what the criteria is for the testing.

I'm the only one in the family, for generations that I have checked, who has ever had bc. Other types of cancer, yes, but not bc. Would it be silly for me to be tested?

Or does the gene have to start somewhere?? Like with me??

CR

I had testing
I had testing for BRCA1 & BRCA2 when I saw the specialist at Massachusetts General. I met with genetics counselor and with different cancers including BC on both sides it was recommended. My tests came out negative. They tested to make sure I would not only pass this on to my son but his children as well(which will be in many years).

My insurance company paid for the testing.

Margo

Hi Jackie, I was diagnosed
Hi Jackie, I was diagnosed in April, 2006.I am the 4th in my family to have breast cancer so my doctors recommended genetic testing. The testing cost about $4300 but my insurance agreed to cover the cost. The hardest part was waiting the 4 weeks for the results. I tested negative for Brca 1 and 2. The geneticist said that my family is genetically predisposed to breast cancer but the particular gene mutation is not known.

Once you have the testing, anyone else in your family can be tested for about $400 because there is not as much work that has to be done for the additional tests.

CR1954 said:

Testing...
The thing is that my daughter's (she is 32) ob/gyn has said that if I will get tested and if I am positive for the gene, then it will make it easier for her (the Dr.) to monitor my daughter and do more tests, aside from mammograms.

I don't mind having the test done. My problem is that I don't know if my insurance will touch it because there is no other breast cancer in my family.
I'm not sure what the criteria is for being tested.

CR

I had the genetic test in
I had the genetic test in April. My mother had ovarian cancer and I had one sister with breast cancer and a first cousin with breast cousin. The doctor explained that ovarian and breast cancer both come from the same gene. The gene has to be passed from mother to daughter. It doesn't skip generations. A mother can have the gene and not have cancer but if you have the gene, you have a 56% to 87% chance of getting breast cancer and a 27% to 44% chance of getting ovarian cancer. That seems like a wide range to me but that is what the documentation they sent says. Most insurance companies will pay for the test IF your family history is documented and it is proven that you need the test. It will not pay for it if you just want to satisfy your curiosity and no one else in the family has it. The company billed my insurance company $3,120. I ended up paying $114.60 of that amount. My test came back negative but they also included a disclaimer that they only test for the known genes and there could be other "unknown" factors. They also gave me a paper about discrimination and genetic testing. In short it says that both state and federal governments have specific legal protections in place. HIPAA, The Americans with Disabilities Act and additional laws in almost every state protect people from health insurance and employment discrimination based on genetic information.

Bev1969 said:

I had the genetic test in
I had the genetic test in April. My mother had ovarian cancer and I had one sister with breast cancer and a first cousin with breast cousin. The doctor explained that ovarian and breast cancer both come from the same gene. The gene has to be passed from mother to daughter. It doesn't skip generations. A mother can have the gene and not have cancer but if you have the gene, you have a 56% to 87% chance of getting breast cancer and a 27% to 44% chance of getting ovarian cancer. That seems like a wide range to me but that is what the documentation they sent says. Most insurance companies will pay for the test IF your family history is documented and it is proven that you need the test. It will not pay for it if you just want to satisfy your curiosity and no one else in the family has it. The company billed my insurance company $3,120. I ended up paying $114.60 of that amount. My test came back negative but they also included a disclaimer that they only test for the known genes and there could be other "unknown" factors. They also gave me a paper about discrimination and genetic testing. In short it says that both state and federal governments have specific legal protections in place. HIPAA, The Americans with Disabilities Act and additional laws in almost every state protect people from health insurance and employment discrimination based on genetic information.

Thank you Bev......
You have answered my question. I didn't think that my insurance would cover it as I am the one and only in the family to have bc.

But I worry about my daughter and my granddaughter.

What I should do is tell my daughter to see if HER insurance would cover having HER tested.

Thanks again,

CR