Test submitted -- stubborn family member!

boobgirl83

I'm in my 30s and my mom was DXed at almost 50. I submitted my BRCA 1 & 2 blood today and should hear results in 2-3 weeks. Not only did my mom have BC, but so did her mother and her aunts. In addition, I am an Ashkenazi Jew.

Despite my urging, my mom does not want to do the testing as she feels she's already been through BC. She feels it's better not to know and that if I am doing the testing myself, why should I need her to do it. I disagree. From what I understand, her test results may help give insight into my test results. I feel this is especially important since I have two daughters.

Has anyone dealt with a stubborn family member who does not want to do the test? What are some great pieces of information I can share with her so that she will think about ME and my daughters' futures? She feels that since she's already been through the rollercoaster of being in treatment and mastectomy and reconstruction, she doesn't need to dip her toe in this pool. I'm feeling resentful of her and that she's acting selfishly. FWIW, she had chemo, only one mastectomy, and has her other breast monitored in addition to annual pelvic exams. I am under 35 and am currently breastfeeding. I have never had a mammogram.

Jenwith4kids

Hi boobgirl; please be patient with your mom. Get your results back; if they are negative she doesn't need to be tested. If they are positive, and having her results will help you, then you can bug her about it.

I am also an Ashkenzi Jew. My sister and I both had bc, our mom did not. We both tested brca negative. I have daughters, still I believe, no reason for my mom to be tested.

take care.

boobgirl83

Thanks, Jen! I'm trying to learn as much as I can. IS there an advantage... or significance... or extra "oomph" to knowing what my mom is if I end up testing positive? That is, does her status even matter if I test positive anyway? Positive is positive, right? I know, I know -- we're talking about a lot of hypotheticals and we won't really have concrete information until my tests come back in a couple weeks -- but timing does matter to me.

jenjenl

My brother, mother and father won't get tested, i am brca1 positive. That's on them, i can only worry about me. Im confident i got it from my father's side since his mother died of ovarian cancer. I don't think others results well tell you anything more than yours.

ChiSandy

I’m also Ashkenazi Jewish on both sides, and had no family history of breast, reproductive, intestinal or endocrine cancers (female or male). Despite a low probability of testing positive (diagnosed late in life, favorable tumor characteristics) my MO told me to get BRCA tested based solely on being Ashkenazi and having breast cancer. Genetic counselor warned that if positive I’d need to make sure my sister and son got tested too (if sis is positive, her daughter as well). Fortunately, the results came in today--negative for both 1 and 2. Now, some say that’s not a “true” negative unless my mom was positive--but since she died at 85 of “cor pulmonale” (COPD & CHF) I’ll never know. (And my paternal grandmother died relatively young--66--of her second heart attack, so we have no idea what other ailments may have been waiting in the wings). But the lack of history is the true “tell.”

I’m relieved, because I know my sister and son were very reluctant to get tested (amazingly, my sister hasn’t had a mammo since before her daughter, now almost 21, was born). You can lead a horse to water.....

Jenwith4kids

I actually don't think it does matter. I am trying really hard to remember the details from the meeting I had with the genetics counselor. I know she told me something about testing the youngest available family member...maybe my sister remembers, I'll have to ask her. We also discussed additional testing and decided not to do any since it wasn't going to change my treatment plan; she also said that the rate of progress in the area of genetic testing is so rapid that by the time my girls are old enough to be tested (they are currently teens) that the tests would be far more sensitive that what they are today.

I think, and I guess I could be wrong, that if you are negative then your girls will be too - unless your husband is also an ashkenazi jew...then I suppose they could get it from his side (I didn't marry a jew ).

I'm not sure I helped you any.

Don't be mad at your mom. She's been to hell and back and is probably terrified of what you results will be.

I just remembered.... check out this organization if you haven't already. I bet they can answer ALL of your questions: http://www.sharsheret.org/ I spoke to them a few times early in my treatment, they are LOVELY people.

Jen

ChiSandy

Oh, and boobgirl--BRCA results or no, because you’re Ashkenazi and your mom was diagnosed before 50 (presumably before menopause), you should at least have that first mammo as a baseline. Decades ago I had two friends diagnosed in their 20s, before mammos were widely available or even the std. of care; had they been that age today they’d have been screened and survived much longer than they did.

Jenwith4kids

Yes, daughters of women dx'd premenopausal should start mammos when they are 10 years younger than their mom was at dx. So, I was dx'd at 46, my daughters will start mammos at 36 if not before.

exbrnxgrl

I agree with all of the previous posts. One thing that may helpyou, with respect to how important having your mother tested is, is meeting with a genetic counselor. My HMO had me take an online course (with test!) and meet with a genetics counselor, prior to submitting my BRCA test. I am also Ahkenazi and my paternal grandmother had bc prior to age 50. My adult daughters were nervous waiting for my results, which were negative. Anyway, take it easy on your mom for now.

exercise_guru

I tested positive for PALB2 and since there is a 50/50 chance I passed it to my children then my test is important to them. If you don't have the gene and their dad doesn't there is no chance of your kids getting it.

The only advantage of your mothers test is to find out for your siblings and to uncover issues in health history. For example my moms side had ovarian and pancreatic cancer so having her tested helped to further understand that side of our family. the irony is that she came back negative for all genes. It turns out the Gene was passed from the paternal side so I am still not sure what to think of the maternal health history side.

My gene is more rare but getting tested for you and your offspring is probably far more important unless siblings are involved.

Also being a mom is hard. My mom does not want to tell my sisters about the PALB2 gene because they are very high strung and get mammograms anyway. So little is known about PALB2 that even though they are testing me aggressively and recommending an oophrectomy, there are not recomendations out there for my sisters in any case other than a Breast MRI. I debate whether to tell my sisters against my moms wishes. I understand her reasoning on both sides. Its very unlikely that it would change my sisters and how they pursue their breast health as the gene is so new. It would probably just add to their stress with very little help.

besa

boobgirl - I do think it is important for your mother to be tested if you have never been diagnosed with bc. The thought is that there are almost certainly additional unknown genetic mutations that contributed to bc in addition to the mutations we currently know about (in addition to BRCA 1 & 2 PALB2 etc.) .

If your mother, who had a bc diagnosis and has a strong family history, tests and she comes out negative for all know mutations she may still carry some unknown gene mutation (an uniformative negative) and you will have a chance of carrying this same unknown mutation. If your mother tests positive for a known mutation - you will know the exact mutation you are looking for and they can test you for that. If your test comes back for that known mutation you are a true negative and you won't need to worry about your children inheriting that genetic mutation from you.

http://www.breastcancer.org/symptoms/testing/genet...

Possibly you could explain this to your mother. Her testing results are important to both you and your children.

(another very good source of information: www.facingourrisk.org )