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- Jul 17, 2008
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@Sandeek, I just want to help clarify that from a medical standpoint the word "impressive" in the phrase "impressive history" means impactful or imposing. In other words, there was enough history there to make an impression on your physician-- enough of one that it must be taken into consideration for current or future diagnosis or treatment. Although I was admittedly not there myself to hear the intonation during the usage of the word, my bet would be that your gyno was not making light of the cancer within the family but rather voicing that there was enough history to be concerned. I hope this helps.
What are your acceptable options? No test = get cancer, get treated. What are the survival odds after diagnosis and surgery?When I think about the possibility of getting a positive result, I feel a deep sense of rising panic. It's not use telling me simply not to worry - my family history is deleterious, and I can read my possible future in the past that's written in the death certificates I received.
I hope there are support groups near you that you can join. Being embraced by people who have been there, done that, and are doing it is good for the soul and may give you added emotional strength.I need to work on a worst-case scenario basis in order to prepare myself.
I hope there are support groups near you that you can join. Being embraced by people who have been there, done that, and are doing it is good for the soul and may give you added emotional strength.
My mother died of breast cancer at 33 in 1964. No one else in the family ever had it so I’m pretty sure we don’t hAve the BRCA gene. If I did I would totally have a preventive mastectomy and avoid the mess she went thru.
@Jambalaya, If you have other questions that I can help you with, please just ask. If there is anything I can do help you, please let me know.
t-c - you said that effective screening for breast cancer is available...that depends on the individual. MRIs can't see entirely through the densest breasts. Mine are 90% dense and the MRI report always says that the test was compromised by the density.
Also, double mastectomy reduces the risk of breast cancer to approx 5%, and I'm pretty sure the BSO doesn't confer that kind of breast-cancer risk reduction. It also depends what age you have your BSO. And even more depends where on the chromosome your BRCA mutation is located. Some locations are worse than others. Looking at my own family tree, I have to be prepared for the worst-case scenario. Every woman directly before me, as far back as I can go. Gulp.
I never, ever thought I'd find a family history like that.
Still not sure I could actually go through with it, though.
I want to clarify some things: bilateral mastectomy does NOT guarantee that you will avoid breast cancer; it greatly reduces your chance of developing it, but not to zero.
In fact, the recommendations when a BRCA carrier is primarily to have bilateral salpingo-oopherectomy (BSO, removal of both ovaries and Fallopian tubes), then secondarily consider mastectomy or simply surveillance with mammogram plus MRI, which are calculated to be equally effective. Note that the recommendation is based on prospective studies showing that BSO is associated with decrease of ovarian cancer, breast cancer, and all-cause mortality. The double-mastectomy is a secondary recommendation because effective screening for breast cancer is available, unlike with ovarian cancer.
As ever, talk to your doctor AND consult with a genetic counselor who will explain and help interpret your risk as a BRCA carrier.
I just saw this thread.I know that at least two of us here are waiting for this testing, so I wanted to start a thread about it.
Phanie, good for you for fighting to get the test. Are you scared of the result? I am, but if it's positive I keep telling myself that it's a means of getting good care that I couldn't get before the test, even though I would still have the same risk as if I hadn't taken it. Part of me wants to bury my head in the sand and just trust to dumb luck and that feeling "it won't happen to me" which I could easily give in to, but rationally I know the sensible thing is to have the test. If it's positive, I think the knowledge will be hard to live with. However, being rational again, not testing doesn't make it go away if it's there, right?
Background: I have a huge family history of breast cancer going back many generations, plus other cancers in the side-relatives such as ovarian, and the whole picture strongly suggests BRCA. I just found out recently when I did my family history and sent away for my ancestors' death certificates.
I think, for me, the hardest part of all this would be other people's reactions. When AJ told the world about her situation, I was utterly appalled to see that people still criticized her for trying to save herself even though she had this incredibly powerful gene mutation that had killed her aunt, mother, and grandmother at young ages, giving her an 87% chance of getting it. How can anybody judge her in this way, given the facts of the situation? Brad Pitt's supposed friend, Melissa Etheridge, publicly condemned AJ's choice as "fearful" and then said it was all about what you eat. I think Melissa has currently survived breast cancer, but a) it can come back after many years, see Olivia Newton John and b) AJ's gene predisposes her to a very aggressive form of breast cancer which most people without the gene don't get. How could Melissa be so uninformed and so publicly cruel as to criticize a woman going through what AJ did, with AJ's genetic/family profile? People actually criticized her for attempting to avoid the experience of aggressive cancer, which was something of a family tradition for her.
I've already had a very negative reaction from a family-member-by-marriage which has resulted in the termination of our relationship. When she heard about the history of many generations, she said to "let go" and "move on" from my mother's death and she said, just after I'd told her about the family history - quote - "Please do not let this become an obsession."
Yeah, she actually condemned the process of trying to save my own life as a potential "obsession". I could have killed her.
And then she went on to blame the water in that area! These days we know all about genetics, and I had just told her my findings, and she said that those people all grew up in the same area and what else was going on there in the air/water, etc? Well, the latest victim - my mother - never lived in the same village as my ancestors and had moved hundred of miles away from that area fifty years before her death.
Despite clear presentation of the facts and despite the fact that we both speak English, she was completely unable to accept that the five generations of women directly before me dying of breast cancer meant a clear and present genetic problem. I felt she was totally minimizing the problem, and therefore didn't really care, and I was extremely hurt.
In prior years, when I "only" knew about my mother's and grandmother's cancers, all doctors that my family and I had seen said there was no problem. Friends weren't concerned, either. No one was, despite the two family members in the same line. Now, the first family member I told about the huge family history refused to believe it, like people refused to believe that AJ's life could be in any serious danger. It makes me wonder what it would take for some people to believe it. But probably there are some people who think you can beat powerful gene mutations with diet.
This is a taste of things to come. Seeing reactions to AJ and my relative's horribly cruel reaction makes me realize that the fewer people I tell about my situation, if the test is positive, the better. This means you have less support, of course. But people don't really understand about breast cancer, about what a relentless killer the genetic kinds can be - at least, it is in my family. I also read about a woman who mentioned her BRCA-positive status at work and the next thing she knew, people were coming up to her asking how she was, and she was passed over for a promotion that she was expecting to get. Lesson: Don't mention a thing to anyone at work!
I'm feeling pretty raw and I've felt disappointed at a friend who thinks I should just do screening if the test if positive. She knows that I have extremely dense breasts and that no machine can really see through them.
If someone I really cared about had an incredible family history plus a gene mutation, I'd really want them to have surgery so that they'd be safe. I can't imagine encouraging someone who's important to me, with that profile, to take a wait-and-see approach. To me, that sounds dangerously close to implying that they don't think you should avoid getting cancer, which means.....what? That the only acceptable reason to get rid of your breasts/ovaries is if they are already cancerous? You can probably imagine how hurtful this is. What is it about people's refusal to believe that someone's life could be in danger from a gene that's killed everyone before you? Is it good old-fashioned sexism?
As you can tell, I'm having an extremely hard time wrapping my head around some people's stupid reactions.
Phanie, when are your tests?