BRCA question

[michele u]

I never did get the genetic testing done for BRCA1 and 2. My question is why me get it tested since i've got breast cancer. My daughter is 8. i thought when she is about 20 she should get tested. Is that the right approach? Does anyone know if I do have the gene then will she 100% have the gene, or is there a chance she will not have it? I guess i'm alittle confused on that.

[MichelleMoon]

I was pretty sure I had one of the BRCA genes once BC started popping up all over the family, including my mom. Like you, I didn't see the point in getting tested but went ahead anyway, mostly to help some research efforts at the University. I have a daughter who is 10 and would advise her to get tested at 18 or so. Used to be that 18 was the youngest age they would test for BRCA since at 18 you have the decision making authority (?!) to make the decisions about your health.

Good luck with your decisions!

[KellyA]

Michele,


Hi. If you tested positive for the gene, she would have a 50/50 chance of not having it. based on computer calculations by the geneticist, i had an 88% chance of carrying the gene (based on family history). I turned out negative.

One thing, as petty as it seems, is that I would recommend for someone who was going to be tested, WHO DID NOT HAVE CANCER YET, to have all their ducks in a row beforehand with life insurance, etc. I was advised that once you have testing, and if its its positive, you can have some difficulty getting ins. This didn't apply to me because I had already been dx'd with cancer and wasn't getting any anyways ( they run the other way when they see me now!) Just something to remember for later when your daughter is older.

Love, Kelly

[Lauriemn]

If you have the gene, there is a 50% chance your daughter will have it. I also have a young daughter, but my decision to be tested was for my sisters,who would also have a 50 % chance if I had it.

It turned out I didn't have the gene, and I think I read on here that Her2 cancers are rarely genetic.


Laurie

[kim]

I had the genetic testing done. What I was told was they ideally like to test the person with the cancer. Then when they test other family members(parents, siblings, children...) they test off the original results(I believe this helps them know the genes location), which makes the test less expensive for everyone else. My insurance paid for my test. I was negative, if I had been positive my children would have had a 50% chance of inheriting the gene from me.

Hope this helps,
Kim

[LAURIE]

I was told the same thing about the 50% and also the reduction in cost for other members (including cousins) of my family if I was posititve. But the number 1 reason I did the testing was for my risk of ovarian cancer. If I tested positive I would of had a increased risk of ovarian cancer (even more than what it is already) and would of chose to have them removed. I tested ngative so I am keeping them for now.

[michele u]

thanks everyone. I thought that it was not 100% that my daughter would have it even if i tested positive. And the insurance hassels, i'm sure are not fun!!

[Karen Weixel]

I did get the test because on my mom's side, I am the 12th person to get bc.

When I went in for the test I was told that typically, Her2+ bc does not have a genetic link and so therfore, women Her2+ bc usually are not BRCA 1 or 2 positive. I was negative.

The woman I worked with did say that our family probably does have some genetic mutation that just hasn't been identified yet (I was told that at Stanford, too). Several of my mom's male cousins have gotten stomach cancer. Lovely.

Karen

[caya]

Thanks for that information about HER2+ cancer typically being negative for BRCA 1 & 2. I just got tested last week, and the genetics counsellor told me that based on my family history (spotty) and the fact that I am a premenopausal Jewish Ashkenazi woman under 50, my chances ( from a computer program) of having either of these genes is around 15%. Certainly hope I'm in the 85% NO group, as I have two daughters - 18 and 21.

She (and my onc.) told me that even if I am negative for the BRCA 1 & 2, my girls and my mother have double the risk of the normal population because there is probably another BC gene out there not yet discovered. So they will have to be more vigilant with earlier testing etc.

I will find out in about 4 months. I have an appointment next week with a gync. onc. to talk about ovary removal anyways.

Caya

[Stephanie B.]

My onc recommend I have the test since I do have a daughter (she is 2) and I have an aunt that was dx with BC after me. Luckily I was negative. My OB/GYN had asked if I had the test also because if you are positive you also are at a higher risk for ovarian cancer.

I was glad I got the test even though my daughter is so young to ease mine and other female relatives minds.

Stephanie

[Margerie]

I am the first one in my family to get bc- got the test anyway. I figure knowledge is power. And I have a daughter, mother and 2 sisters. Tested negative also. Was also told there may be a genetic component- just not known as of yet.

[Susan McQ]

My surgeon recommended testing due to my age, and family history (2 Aunts). If you are positive, there is the ovarian cancer risk, but also the risk of another breast cancer. Our thoughts was with a positive result, I would have considered bilateral mast. instead of lumpectomy.

Susan

[Soccermom]

Hi Michelle,
The preferable way to go is to have the "affected" family member tested before testing anyone else. This narrows down the field of possible mutations and makes testing others less expense and time consuming. That said there are situations where due to the possibility of two mutations existing within one family (father and mother both of same ancestry ie: Ashkenasi Jewish, cancer survivors and with family history of BC/OVCA and others) children of same would need to be tested for more than the one site analysis. Having two mutations does not double the risk, however it make the likelihood of passing one on 75/25 as opposed to 50/50.
Initially I tested for the 3 panel Ashkenasi mutations (a cousin tested BRCA1+) (Mom and her 3 sisters, 2 cousins w BC)and I was negative.After my DX I discussed this w a certified genetics counselor who pointed out that my cousins mutation may have come from her fathers side of the family (also cancer ridden) and that I needed to do full sequencing. The night before my mother passed away (BC) I had her blood drawn as well...Both of us were/are BRCA 1&2 negative...go figure?!

Hope I have made some sense here...(nightime brain drain setting in!)
Marcia

[momdeeco]

I am the 4th generation on my dad's side to get breast cancer. After genetic counseling it was figured that I had a 25 % chance of having Brac 1 or 2. I went ahead with the testing and it came back "inconclusive variant." (15% come back with this result. Go figure!) We are looking into having my Aunt tested as she is the only other living relative who has also had BC. I will be having my ovaries removed in the near future. As for my 2 daughters, 19 and 26, she recommended to be vigilant with self breast exams, and start mammo's at 30. Would not serve any purpose to have them tested because they have not had BC and not sure the gene variant is related to BC. The variant was with the BRCA 2, and not the BRCA 1. Alot to absorb~

[Soccermom]

Momdeeco,
Just an FYI..stay in touch with your gen. counselor. If more cases of this variant are detected in connection with w/ a bc or ovca diagnosis it MAY be reclassified. Your counselor should keep you up to date as more info becomes available on your variant.
Warmly,Marcia

[momdeeco]

Thanks Marcia. I plan to do follow up appointments with oncologist in Chicago. I thought for sure she would recommend a bilateral masectomy, but she didn't think that was necessary. Was glad to hear that but praying she is right!


































1

[MCS]

No bc in family history.


I chose to be tested becuase I have two daughters and I wanted them to know their risks. The doctor also recommended just to have all covered.

Then i found out here that brac1 and 2 are negative for us. Unfortunately, I was tested before mastectomy. I wish I had been tested at time of biopsy for brac1 and brac 2. I'm also taking the ovaries out even though I'm not at risk.

Also the insurance could give you a hassle especially if hmo. Ask doctor to re write and justify need. I know my geneticist said that to me.

MCS ( maria)

[Soccermom]

Dear All,
As a note of interest. Keep in mind that being BRCA+ does not mean that one will definitely be diagnosed with cancer.
A study was done on patients that were BRCA +, with no family history. It seems that those born before 1940 many went on to never have a cancer diagnosis,hence no family history. BRCA is a repair gene. A BRCA mutation is a fault (the first "incident")within a specific gene. It takes a second "incident" to the gene to render it incapable of protecting against cancer. Our environment was healthier back then and the thinking is that there were fewer environmental factors that would cause this second incident.

There have been NO incidences ,as yet, of insurance discrimination based on a + BRCA test. That said it is not out of the realm of possibility that it could not occur. The GINA (Genetic Information Non-Discrimination Act) was passed not long ago to protect against such discrimination. There are steps one can take to protect this information.

I highly suggest anyone interested in learning more go to the website of FORCE Facing Our Risk of Cancer Empowered to learn more about BRCA and its implications.

You have all been so helpful to me here...its nice to finally be able to "pay back" with this information.

Warmly,Marcia

[harrie]

I was tested positive for BRCA2 and also had an elevated HER2. I received the gene from my mother who died of a recurrence of bc. Both my sisters tested negative and so did my 27 yr old daughter. Believe me, I held my breath waiting for the results for my daughter!! Since I was the first person to be tested, the test was much more comprehensive and expensive then it was to have my sisters and daughter tested because all they had to do for them was to look for the defective portion. As far as I know, my insurance paid for my testing.
Maryanne

[Melissai]

Hi! I was diagnosed Jan.2006 with multi-focal IDC of the left breast (4 tumors) and DCIS of the right(which was a surprise in the pathology of my bilateral mastectomy). I am 37 years old, Stage 2, Her2+ by FISH 2.1, grade2, blood lymphatic invasion +, ER+/PR+. My father died of Prostate ca at 51, my older sister was diagnosed with stage 3 BC 8 years ago so when I was diagnosed we decided to do genetic testing. I tested positive for BRCA 2, so my sister was then tested who also tested positive. My little sister who is cancer free then tested and also is positive. It is a 50/50 chance at carrying the gene but unfortunately in my family none of us escaped carring the gene. We did have my mother tested since her mother died of breast cancer but she is negative so it must be coming from my fathers side. None of us had any problem getting insurance to pay for the test and UCLA has a wonderful program that you can be tested anonymously if you do not choose to use insurance. After the first person gets tested($3,000) it is only $300-$500 for the rest of the family. It is definatley beneficial to be tested as my little sister only 1 year younger has just underwent prophylactic mastectomy she had no cancer in her pathology and is extremely happy with her reconstruction and maybe she will not have to go through what the rest of us have been through.