Question on BRACA1 Gene???

Hi Cheryl,

I am brca+. My little sis who had bc 9 yrs ago got tested after my bc dx and she too is +. My older sister who had uterine and cervical cancer 2 yrs ago is negative. My other sister has yet to be tested.

We all have the same mom and dad.

I have 9 neices 18 or younger. So far, 3 have been tested. 2 positive, one negative. The negative one, 16 yrs old, has already had a scare with something on her ovaries. Thank God, it was not cancer.

Honestly, I don't think any of this matters really. I believe cancer is a part of our make up as a human being. (A doctor (onc) told me that when I was on a plane going to see my little sis after her dx.)  Whether or not it rears it's ugly head is a crap shoot.

I wish you the best of luck and, I'm so sorry to hear about your mom.

Sincerely,

Traci

Cheryl,

My understanding is the same as Donna's.

The BC gene is a gene that we inherit from either our mother or our father.  For each child in a family, it's a 50/50 toss-up on which parent they inherit this particular gene from; some will get the father's gene, some will get the mother's gene.  So if one of your parents - either your mother or your father - carries the BRCA genetic mutation, you and all your siblings each have a 50% chance of inheriting it.  That means that one of you can test positive but another can test negative. 

If your family carries the gene but you test negative, it means that you inherited from the other parent, the one who doesn't have the genetic mutation.  In that case, there is no way that you can pass the gene on to your children.  On the other hand, if you test positive, it means that there is a 50% chance that your daughter inherited the gene from you.  But there is also a 50% chance that she inherited this gene from her father, who hopefully doesn't carry the genetic mutation.

The only situation in which someone is guaranteed to carry the BRCA mutation is if, by unfortunate coincidence, both parents happen to carry the genetic mutation.  On the other hand, if neither parent carries the mutation, then their children are sure not to carry it.

Yes, if you test negative, then your daughter is definitely negative, unless by some really unfortunate fluke, her father happens to carry the gene.  But if there is no significant history of breast cancer, ovarian cancer or prostate cancer in his side of the family, then your daughter doesn't have to worry, if you test negative.

Here's hoping for a negative test!  Mine was, and it was a real relief!

Hi there...I am 32 and have had breast cancer twice. Once in each breast I had a bilateral mastectomy and just found out that I am brca1 positive.  I will opt to have my hysterectomy when the holidays are over and I am done healing from my other surgery.

I was going to have this gene testing performed but my doctor informed me that if it was positive then the insurance companies could consider my condition as pre-existing.  Did anyone have problems with insurance after a positive gene test?

Dink,

I see that you put under signature as no diagnosis - I checked your profile and see that you have DCIS -  that is cancer and the diagnosis trumps the "pre-existing condition card".  You already have it (cancer) so you could get the test done to confirm if you had the gene and if positive, any proactive treatment that you would need to consider.  I was told this by my genetic counselor at my oncologist's office when I was informed of the test.  I hope that you get the answers that you are looking for.

Take Care,

Trish

ps. - I have so far decided not to get the test (never say never though)

Myriad Genetics (which is the only company that runs this test) states on their website that the result is only released to you and your doctor.  No one else is supposed to be able to know this information.  There are federal laws regarding insurance discrimination based on genetic issues.  Testing positive for BRCA 1 or 2, particularly if you don't have cancer already, isn't a preexisting condition.  Not everyone who tests positive gets cancer.  And right now, uterine cancer is not known to be related to breast cancer genetically speaking.

msannie,

Yes, I understand that it's equally possible to inherit the BRCA genetic mutation from either one's mother or one's father.  I was saying only that it would be a fluke if both sides of one's family happened to have the mutation.  That's been known to happen, but it's not too common.  In fact, in my case, when I went for testing, while there was BC on my mother's side (my aunt, premenopausally and my mom much later in life), it was actually my father's side of the family that was more concerning, because of several cases of prostate cancer among the men, and fewer than one woman per generation over more than 100 years.  Fortunately, I tested negative.

dink,

I agree with Trish's comment.  Since you already have breast cancer, any information you get from the genetic test shouldn't have any effect on insurance.  From an insurance standpoint, you already have to deal with the fact that you have breast cancer.

twogirls,

Uterine cancer isn't related to the BRCA mutations, but ovarian cancer is.  So if you test positive, that would be important information in understanding your risk for ovarian cancer.  But, having a positive BRCA test wouldn't be the same as having a pre-existing condition or even having a pre-cancerous condition.  Even if you tested positive, unless you've been found to have ovarian cancer, you would not have a pre-existing condition.  And unless you have a biopsy that shows pre-cancerous cells, you wouldn't have a pre-cancerous condition.  You simply would be considered "high risk" to get ovarian cancer at some time during your lifetime.  But even being high risk, you might be one who never gets ovarian cancer.   And, if you test negative, you have the comfort of knowing that you're risk for ovarian cancer is equal to that of the average population.

I don't know much about the BRCA gene. My mother never had bc but I have a sister with a different father that has had it. I also have 2 daughters but if I test positive and they also test positive we live our lives waiting? My Dr. wants me to have the testing and I'm just not sure.

Dawn

I have a questions.  Ms. Toronto, if your genetic testing is possible then there may a possible risk of ovarian cancer.  I have had a hysterectomy but I still have my ovaries.  How would they test for overian cancer after a hysterectomy?  I'm 44 years old so I'm not sure if I have gone through the change or not - no menapausal signs and symptoms.  I put not cancer on the DCIS on my profile because the doctor's told my husband and myself that DCIS is a precursor only to cancer and is not actual cancer.  Everything I have read says DCIS is cancer but my husband doesn't think so because of what the doctor's have said.  I'm confused.  Isn't cancer like being pregnant in what ever form it is - it is.

Thanks,  I thought so but by the way the doctors are talking "it's nothing to worry about."  Never had ultrasound for this and I don't think they will do one out of curiosity.  So like everything else - we will wait and see. 

I am the third of 4 sis to have bc.  The first sis passed away at 33.( My daughter and I went to a genetics counsellor to see if we could be ( prior to my dx,,,2nd sis refused  have genetic testing,,,,were told that they wanted a bc survivor so we couldn't get it done.) 

After I was dx'ed the other sis did have the testing done...she tested positive for the brca 1 gene. After all her daughters, my daughter and the deceased sis' daughters have been tested and all have the gene.  This has allowed everyone to become proactive in their preventative measures.

I think it is a good thing to have genetic testing done.

I had an oopheroctomy and hysterectomy in Sept. and am glad I chose to have a bilateral mastectomy when I was dx'ed with IDC.  My daughter had an oophm hyster and cervix removed in November, my twin nieces (29 years old) had prophylactic bilateral mastectomies, their sis will have hers in January and the deceased sis' twins are having their consult in the near future.

I was aware of the 50% chance but we are definitely batting 100%!!! 

Peaches----I have family history of bc and colon ca (MGGM had bc, MGM had colon ca, mom has had both bc and colon ca, and me with LCIS) and my oncologist still feels that I am low risk for the BRCA gene.  I spoke with a genetic counselor (not formally, but after a seminar on bc and genetics at work) and she also felt I'm probably at low risk for the gene.  The red flags for the BRCA genes are:

1) several primary relatives with bc, especially premenopausal (primary being mother, sister, or daughter)

2) family history of ovarian cancer

3) family history of male bc

4) Ashkenazi Jewish heritage 

So if you don't have any of these factors, your risk for the gene is probably very low as well  (my mom is my only primary relative with the bc, and she wasn't premenopausal). I haven't totally ruled out having the testing (would go for the genetic counseling first and then decide based on their opinions, which perhaps is what you could look into), but I'm not rushing to do it. Even with our high risk with LCIS, the risk is even greater with a positive BRCA gene finding. Since I've already lost the ovaries, take tamox and am very closely monitored,  the only other step for me with a positive finding is BPMs; but it would give my sisters, daughter and nieces information that  could  be important for them.