Have you been tested for the cancer gene?

[itself]

A dear friend of mine just got tested for the breast cancer gene, and the news was not good. She has an 85% chance of getting breast cancer, and thus is looking at a double mastectomy. Although the medicine in Arizona is not what I consider the best, we do have Dr. Victor Zannis here, who has an amazing reputation as a leading breast surgeon.

Have any of you had this gene test? And if you tested positive, what did you do?

[shootingstar]

Maybe I'm the last to know, but I have never heard of this gene test.

Obviously I've never been tested for this. But then I'm clear after my last breast examination over 6 months ago.

Does your friend have any confirmed malignant tumours? (Aside from this gene test.)

[KnottedYet]

I haven't.

While the type of breast cancer that runs in my family is likely genetic, there isn't a test for that one yet. (it's the one that is linked with malignant melanoma)

As soon as there is a test for that one, I'm getting it. And if it is positive, I'm getting a double mastectomy. I've already had the malignant melanoma, and I have watched the suffering from the breast cancer in the maternal side of my family.

I love my boobies, but not that much.

If your friend is very active, I'd suggest she not do tram-flap reconstruction. When those cause trouble, they are a real pain to rehab.

Edit to Add: oops! There is a test for my family's brand of breast cancer, it's the BRCA2 test. (I knew about the BRCA1 linked to ovarian cancer.) Ahh, ignorance is not bliss. Time to make an appt with my doc... http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA And if my insurance company balks, I can try this: https://www.23andme.com/health/all/

[roadie gal]

My sister, who died last fall from breast cancer, was BRCA-2 positive. I have made the decision NOT to get tested because I don't want the insurance companies to refuse to pay because it was a pre-existing illness if I have the gene and someday end up with breast cancer. I know it's illegal for them to do that, but I don't trust them as far as I can spit.

I've discussed this with my gyn doc. Each year we test me as though I do have the gene: mammogram and pelvic ultrasound. I think it's the best way to go for me.

[shootingstar]

I have made the decision NOT to get tested because I don't want the insurance companies to refuse to pay because it was a pre-existing illness if I have the gene and someday end up with breast cancer. I know it's illegal for them to do that, but I don't trust them as far as I can spit.

It continues to amaze me about the pre-qualification 'problems' and private health care insurance companies in the U.S.

But another whole topic in itself which doesn't address itself's friend's dilemma.

[OakLeaf]

I know my thoughts on the subject are unpopular.

But I've had the chance to get friendly with my mortality, and I've come to a place of believing that that is a good thing.

I think we should all make these decisions from a place of strength and not a place of fear. That is, as my sig line a few weeks ago said, "ask the next question." Decide what you will choose at each step BEFORE you decide to have any tests. If this is positive, then what? If I choose this treatment, then what? After the treatment is "complete," then what? This doesn't only go for cancer testing of course, but because that is such a huge fear-driven business in the USA, it's one of the kinds of testing that we think about most often, and when a test comes up positive or equivocal, it's so easy to let abject terror and the directions of outsiders drive our decision-making.

Understand at each step what quality of life you would be giving up (including the emotional quality of life). Study the statistics and understand what your real chances are of a greater quantity of life. When you're healthy and before you have any tests of any kind, make a decision as to what quality of life is acceptable to you and what you're willing to give up for the chance of a longer lifetime. Enshrine these decisions in your Living Will, and in specific, preferably videotaped discussions with your doctor and your family.

[arielmoon]

My mother has encouraged me and my sister to get this test but I am on the fence. My mother and her mother are/ were breast cancer survivors and now my father's sister is as well. Because I am high risk, I get a mamo every year, but that is it for now.

[rocknrollgirl]

My test came back negative.

[GLC1968]

My mom is a BC survivor, my grandmother was not. I will not be tested. Knowing that I carry the gene would not change my plan of attack, so I see no point to doing the test.

My test came back negative.

Good to hear!

[OakLeaf]

Yay R&R!

[Crankin]

Good news, R and R.
I think I would have it, but not sure. While I'm in the "genetic" group for the BRCA 1, no one on either side of my family has had bc. In fact, no one has had cancer, unless you count my dad, who has been living with prostate cancer for 20 years or more. He was about to have surgery when my mom got sick (not cancer) and he canceled it. After she died, he got treated with hormone injections and he's been fine since.