BRCA mutation test and opinions please!

[Laurie]

Some forum members may know that my beautiful sister Lisa died from triple negative breast cancer 7/15/09. She tested positive for the BRCA mutation which can pre determine breast and ovarian cancer. Triple negative breast cancer most often affects Hispanic, Black and young women--my sister was young at first diagnosis at 37 but she was far from black or hispanic.

As I am the oldest I also have a little sister who tested negative for the mutation.

My mother suffers a great deal of guilt for Lisa's cancer as her mother died of ovarian cancer and while we often talk and discuss about what animals should not be bred as human beings we often NEVER discuss family history and whether or not couple should be bringing children into this world. My parents with all their family history should not have bred, however they did, and I am grateful. Lisa never felt it was a family issue however my mother still struggles with this a great deal and therefore is not going to be tested and this is also at the agreement of her doctor.

I recently took the test. It's a mouth swish test these days where you swish around with scope and spit into a vial for them to send off to test. I have not heard back yet but it is going on 2 weeks.

There is a very, very small survival rate with triple negative breast cancer. I watched my sister go through treatment after treatment after treatment to still see her wither away and die in the end. Yes it did give her 8 more years with us, but they were not the best of years. Putting poison into your body and radiating both your body and brain takes a very horrendous toll on a person.

My question is this--should my test come back with my showing the same positive mutation as Lisa what would you do? I am 47 years old and there is no way in **** (and yes you are rather stupid Kelly Preston) that I will ever have children at this age. But just testing positive for the mutation does not mean I have either breast or ovarian cancer--it simply means my chances of getting it and especially Lisa's triple negative breast cancer and greatly increased.

Would you have your breasts and reproductive organs removed as a preventative measure? And keep in mind simply removing the breasts does not mean you do not still have breast tissue.

Would you do nothing and wait and see if you do get cancer and increase your yearly mammograms to 4 times a year instead of once a year?

And more importantly would you share this news with your mother knowing she still suffers so much over the loss of your sister?

At this point I already have an idea what I will do provided with the information I do carry the mutation--I would just like to see what others have to say about it.

 

[Sesame]

I think if I was at risk, I would opt for preventative measures. At least that's what I would hope I would do because I would still be able to have a decent quality of life after preventative removal surgeries. Of course, there are always risks with any type of surgery, no matter how routine it may or may not be. I hope I would remain strong enough to make this choice in real life.

I don't think I would be able to go through with just waiting and see what happens route. I would have too much worry and paranoia. I think I would end up with such a negative mind set that it would impact my quality of life, since I would be so focused on the "what-ifs." What happens if the stress and the worry lead to other health issues (ie: heart attack)?

These decisions aren't the ones we hope to make during our lifetime, but unfortunately they happen. I'm unsure how I feel about your mother's guilt, but if you do decide to have surgery of any sort, I hope you would let her know.

I wish you the best of luck Laurie!

 

[chinnychinchinchilla]

i think i would get the preventive surgeries. im on the same boat as you. every women i can think of on my mothers side has had breast cancer, including my mom, so im going to have to be tested early and watched more. im not very optomistic that i wont get cancer but hopefully i'll be able to catch it soon.

 

[minrex]

Ovarian cancer runs in my family (my dad's mom died from it at age 40, and my mom and all of my aunts on both sides have had trouble with their ovaries, and thus have had hysterectomies). I will definitely have a hysterectomy myself at some point; probably either after I have a couple of kids, or in my mid-late 30's, whichever comes first. I also realize that I have to get checked up more frequently than someone who doesn't have the family history that I do.

 

[caiti]

Personally, I would probably get my ovaries removed, but I don't know whether I would do it at my age as it would send me into menopause at 23. I might have a hard time since I am superficial, getting my breasts removed, I'll admit it. Maybe if I actually thought about it, I would do it but it seems it is less effective as a preventative surgery than removing your ovaries since I don't think you can really screen for ovarian cancer (you probably know more about the surgeries efficacy than I do).

I would at least increase my mammograms, yes. I wouldn't tell my mother (if my mother was yours) if the test was positive. I would tell her if I ended up getting a life-threatening cancer or had a mastectomy or an oophorectomy since she would probably notice. It may just make her feel worse even though nothing has actually happened yet. I feel like she might be waiting for the dread of finding out another daughter has serious cancer, but I don't know your mom and how she would react obviously. I would find it difficult to not share something with my mom on the other hand.

I know nothing about the actual test, but usually the longer it takes for them to get back to you, the better the news is.

 

[starleomach]

It is a very tough call. I know when my grandma had her uterus removed they found some suspecious cells and same with my mom but it wasn't the type that really spreads, so when I am done I will likely have a hysterectomy as well but most women in my family have to have it done for other reasons. Neither my mom or my grandma had it removed for that reason it just so happens it was found after the removal.

I would wait and worry after the results but I guess if it would prevent major issues later on then I would. I would think that if I had a test done and was high risk I would do what I could to be sure I would be with my family as long as possible. But it is so hard to say of you aren't actually in those shoes.