Fake Out.
Negative. Negative all around. Elevated risk of ovarian cancer (5-7% lifetime) based on family history, but nothing like the mutation-level risks.
I guess this blog is defunct again. Oh well.
Labels: BRCA
Negative. Negative all around. Elevated risk of ovarian cancer (5-7% lifetime) based on family history, but nothing like the mutation-level risks.
Labels: BRCA
Yesterday, a big manila envelope arrived in my mail.
Labels: BRCA
I don't quite follow, but I'm glad another piece of the puzzel has arrived.
I can't imagine how hard this process is for you.
yes must be very hard
Never ever ever underestimate the impact that a person can have on others, or the memories of even non-elephants, or the kindness that can come from the combination of the two.
*sniffling*
Aw. So nice to hear something like that no matter how much time has passed.
Wow, that's very moving.
Wow, that is so cool. I was very close to my grandmother, and when she died, people came out of the woodwork to tell me how wonderful she was. I didn't know she had done *anything* for anyone else, other than some volunteering, so it was really special to hear how she affected other people. It's nice that you got to experience that.
And hey, at least the kid didn't fight you to nap :)
*sniffling*
It took several phone calls, but finally the rudest person I spoke to* turned out to be the most helpful, and by the end of last week I had the requisite forms to request my mother's medical records. Of course one document needed to be notarized, so the kids and I had a fun 45 minutes or so waiting in the bank lobby for a notary public. I bribed them with ice cream. The kids, I mean - though perhaps if I'd brought a few extra cups along I'd have been in to see the notary sooner.
Well, I think I'm glad you pushed it off another week, but... ARGH.
My bet is that they only do results appointments on Fridays for the doctor's convenience, rather than your psychological wellbeing. I've encountered this with lots of doctors - they only do surgery one day a week, etc. Maybe they're at more than one office throughout the week. Or maybe they don't mix different kinds of appointments well. Or maybe they want to get out early for the weekend.
But you're right, the infantilization is there anyway. Just the assumption that you MUST have counseling simultaneous with your results - for most people, I think they're right that it's best; but I can see wanting to be able to decide for myself.
The more I think about it, the more annoyed I am at the results + counseling appointment requirement. It would actually save me a lot of time and mental energy if I could get my results, give myself a few hours/days to freak out and calm down, and then go to a separate appointment for counseling and advice armed with specific, well-thought-out questions. Instead I have to prepare myself for four possible scenarios (mutation/no mutation, with/without my mother's path reports indicating a mutation), come up with all the possible questions for each of those scenarios, and process the results quickly enough to know what to ask without letting emotions get the best of me.
This is why I peed on a stick the day I had my first beta blood draw. If I didn't have that second line, I never would have thought to ask for the hcg number.
For a minute there I thought you were talking about January 2011.
Hi there - just found your blog after you commented on mine. I started from the bottom and read up..thought I'd get to the top to find out if you were BRCA mutated like me, but I guess I have to wait along with you to find out. From start to finish it took 55 days for me to get my test results. Terrible..just waiting. And my doctor's office did tell me the results over the phone..and I didn't jump off a bridge, but I did sort of feel like I got pushed off of one. That was almost a year ago.. feeling much more empowered and confident about things now!
Teri
This is why I peed on a stick the day I had my first beta blood draw
I don't think I need to worry about my BRCA status. The sheer stress of trying to get my mother's medical records is going to kill me before the end of the month.
Labels: BRCA
Oy. There should be health insurance just for dealing with medical bureaucracy.
Red tape, yuck!
Red tape? lol
Shorter version: even though I'm high risk no matter what, I'm still a good candidate for testing. A positive result: (1) means we will be super-aggressive with preventive measures and screening, instead of merely aggressive; and (2) provides context for any future testing by my sister or my kids. A negative result does not put me in the clear, but it at least means that I do not have a known mutation that I may have passed along to my children.
Labels: BRCA
Er... I'm familiar with the 2-stage testing procedure (I think it's as much a financial/probability game as anything else - most mutations tend to be found there, so let's start with those, if it doesn't pan out then we'll pay for the rest) and yet I'm still confused by some of the reasoning she gave you.
There are differences between how someone with a BRCA1 vs. BRCA2 mutation is treated, yes? We know they lead to different chances of breast vs. ovarian cancer, so I would think different courses of action might be recommended...??
Although I suppose this knowledge relates mainly to the 3 common mutations, which is what they will test you for no matter what; I have no idea what is known/unknown about less common mutations, or what difference it would make.
I'm sure you understand what she said better than I do, which is the main thing: I'm just wondering.
Just got back into town and caught up on your blog. I was wondering how you were while I was gone. I know very little about the chances but I will certainly be hoping for the best possible outcome for this. It's definitely scary.
I'm young. I'm 29 years old, to be precise, though 30 is not too far off. Some of the cancer risk calculators don't even account for subjects this young. My ob/gyn advised me a couple of years ago not to bother getting tested until I was certain I was done having kids, because it's not like we were going to take any serious measures (prophylactic surgery, tamoxifen) when I was also trying to get pregnant/pregnant/nursing.
Labels: BRCA
It is indeed a dilemma. It is a war between the emotional and the rational mind. I liked your post.
This is Joshua from Israeli Uncensored News
It's a tough decision to make, and I wish you all the strength in going through with it.
I can't even imagine. Breast cancer has devastated my husband's family. His mother lost two sisters and her mother to it, and another sister was, thank God, successfully treated. Before there was readily available genetic testing, my MIL and 3 of her nieces - daughters of the two sisters who had died - all went for radical double mastectomies. The nieces were very young, not yet married and the doctors strongly advised against it.
Did they do the right thing? No one will ever know, I guess, but they've all gone on to get married to amazing me and have wonderful children. I think what they did was incredibly brave, and I honestly don't know what I would have been able to do in their position.
I'm sorry you're having to deal with this; I can't even imagine the weight of not knowing/knowing/knowing but not knowing.
yeah, rachmana was diagnosed at 31 (and would have been diagnosed at 30 if anyone had been paying attention). statistics mean nothing when you're the one in that third standard deviation.
It is indeed a dilemma
If you haven't been here in a while READ THIS FIRST and proceed with that post in mind. Thanks.
Labels: BRCA
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I read your story and think you might like to know about Sharsheret, which is a national not-for-profit organization for Jewish women and their families facing breast or ovarian cancer. I’m a Genetic Counselor and Coordinator of Sharsheret’s Genetics for Life program. I speak to many women in situations similar to yours and I know they have been helped as they struggle with the same sorts of questions that you’ve expressed. I would really like the opportunity to speak with you over the phone and talk about your concerns. Please feel free to call me at (866-474-2774). We also have a blog at www.sharsheret.blogspot.com where you can find out more about our program and read some of the inspirational stories from the women of Sharsheret.
Niecee Schonberger, M.S., CGC
@Niecee - thanks for reaching out. I'm not looking for an additional counselor at this time, but maybe after tomorrow's appointment, after reuslts in January (if I get tested), or at some later date, I will be in touch.
Ugh. You know most of this is not news to me, but the awfulness of the catch-22 hits me all over again.
I don't think anyone is going to not LET you get tested. (Except your insurance company, maybe? even they would probably have to concede that you qualify.) I do think they might argue against it. They might press you to articulate what exactly you would do differently if you got positive results vs. negative, given that you can't tell if the negative is a true one.
But "I just need to know" is a valid purpose, too. If that's what it comes down to, I think they would just want to make sure you're prepared for how disturbing both a positive & a negative result would be, each in its own way. Once you've been counseled, I don't see why anyone would stand in your way.
And even if it will make no practical difference for you, it could make a WORLD of difference for your kids. Right? An identified mutation would mean each of them could be free of this fear, if they tested negative for the same.
I doubt I'm telling you anything you don't know. Just wanted to register that I'm here listening, and I'm glad you're working your way through this no matter how scary it is.
Oh, and one more piece of info in case it helps: if your aunt's breast cancer was pre-menopausal, odds are much higher it was a BRCA mutation.
Niice thank you Robber barren
Big sigh of relief.
Yeah, BRCA! Don't let the door hit you on the way out!!
And hey Robbie, maybe you'll find a *happy* reason to come back here...
Woot! Woot! Never have I been so glad to hear a threat of a blog going defunct. I hope this news cuts a HUGE chunk of stress out of your life. Although, you have 3-year-olds, so the stress will come back in spades in another form. So I've been told ;)
Although, yeah - what 'Seph said.
I'm so happy for you, a stroke of luck.
The whole process must have been so harrowing for you.
So incredibly glad to hear that news! Whew. (But feel free to blog about whatever you'd like to blog about here...)
Thank you for that good news!!
Speak up!