Topic: The Fun Keeps on Coming

Linda,

At some point the merry-go-round at least slows down a little, so you don't get as dizzy.

Genetics testing is appropriate. I just feel there are other genes out there that haven't been identified yet. More of us could be positive than we think.

There was a good bit of cancer in my family, but both my first cousin and I are BRCA negative. That's better for our families, but regardless, we all do whatever we can to have the best shot at a longer life.

Hang in there. Two primaries is a bitter pill. I've been there, too.

Anne

I believe that there is some genetic conection to all bc. We have only identified a few of them and one day all treatment will be linked to which gene is responsible.

Right now I am waiting for the results of a p53 gene test. My 16 year old daughter died of rhabdomyosarcoma, which is linked to this gene, and my mother, aunt and I have bc.

Even if genetic testing results won't change your dx or tx, I think it is an important contribution to the future of cancer treatment.

Yesterday I met with the genetic counselor to go over our phone interview and to have my blood drawn. She had put all of my family history into the computer and it shows I'm at 67% for BRCA1 and 23% for BRCA2. She personally walked me down to the lab, stood by me as they drew my blood, put my bar code sticker on the vial and took it to FedEx to be over nighted to Salt Lake, so it would be there this morning. I have an appointment with her on June 2, if the results are back by then.

We spoke for quite a while about what all this means, in terms of my family and health. If I test positive, I will have a full hysterectomy. If it's positive it will answer my questions as to where this Cancer came from, twice. If I test negative, I will live my life wondering when/if/where it will show up next...

Linda

Otter,

I spoke with my genetic counselor today and my blood made it to Salt Lake. Here goes everything...

Linda

I haven't been tested for the BRCA genes because the genetic counselor felt there wasn't enough history of cancer:

My mom has ovarian cancer

My sister, two cousins and I have bc

My mom's 3 brothers had colon cancer

My other sister and my dad had thyroid cancer

My dad's sister died of pancreatic cancer 

I may look into it again, but not until the law passes that insurance companies can't discriminate against genetic testing results. 

Thanks Kimber,

I had heard it was supposed to be passing.  Then I have to get the genetic counselor to approve it in order to be covered by insurance.  My oldest daughter doesn't want to know, but my sister does. 

SLH, I cannot understand why a genetic counselor would tell you there wasn't enough history of cancer, given family history you've outlined.

My history consisted of myself, my maternal grandmother, and my mom's cousin, with BC (mine was the only post-menopausal dx), plus 2 of my mom's brothers with prostate cancer.  That was it.  There was no ovarian cancer anywhere.  There was a distinct shortage of women in my parents' generation, though--neither my mom nor my dad had any sisters.  I just read a magazine article today about a study that found the formulas for predicting risk of a BRCA mutation significantly underestimated the risk for women who had few female relatives.

The counselor I saw calculated my risk of a BRCA mutation to be no greater than around 5.5%, but she said she would submit the blood sample if I authorized it.  The company that does the testing (Myriad) has a policy whereby you can send in a sample and they will hold it until they find out how much your insurance will pay (if anything).  If your insurance does not agree to cover the entire cost (i.e., no cost to you), the counselor will call you to discuss the cost and you can authorize the test or decline it.  If you decline it, Myriad throws away the sample.  If your insurance agrees to pay the whole cost, you don't get a phone call--Myriad just runs the test.

That was the option I chose. Even though my risk of a BRCA mutation was so low (lower than even I thought it would be), my insurance paid for the cost of the test.  I didn't owe anything.

I think it's time for a 2nd opinion--you need to talk to a different genetic counselor.  Yours sounds way out of line, advising you that your family history does not justify testing you.  OTOH, maybe your counselor was aware of what your insurance company would say.  Did the counselor quote you a predicted risk of BRCA mutation based on your family history?  They should be able to do that, if they know what they are doing.  There are at least 3 computer programs genetic counselors can use to calculate your predicted risk.  One is provided by Myriad.

otter 

Sheila,

I have been in hiding for a while! I was diagnosed BRCA 2+ and I'm having a total hysterectomy on June 27. I have put off telling my kids until after they get back from vacation next week. I found out two days before my youngest daughters Senior Ball, then it was her Disneyland trip, then her graduation, All-Night party and vacation with her sister and dad. I wanted her to have a month without any more of my health issues. One of my sisters and our mom are going to be tested, as well.

I just want this surgery over so I can heal and move forward. It's been a long 15 months and I want to get off of this surgery train. This will be my fifth one, and I'm still not sure if I will ever attempt any type of recon again...

Linda