Wednesday, June 4, 2008

Bowing out (and some questions for ya)

First, thanks for the birthday wishes. I am another one of those 'birthday month' people so no one ever has to apologize for being a day late ;)

And now I have to respectfully bow out of NaComLeavMo. It's crazy time at work, gearing up to hire and train new staff and I barely have time to read, let alone comment. My reader is getting a little bit overwhelming. I have loved checking out some new blogs and getting to know new bloggers and I'll try to keep up but there is just no way I can do it every day.

Here's where I get selfish though--since I've gotten so many new readers the last week or so I figured it's a good time to ask my latest round of questions. You ladies are all brilliant and I know a bunch of you work in the medical field so I welcome all advice and ass-vice on this one.

Sometime last year some of my aunts and one of my cousins decided to get tested/screened (not sure exactly how it works) for the breast cancer genes since we have such a significant family history. I didn't do it at the time because I was getting poked and prodded enough with all of the preliminary testing for the RE and quite honestly, just couldn't handle the thought of it. Well I found out recently that they tested positive. Now I know it doesn't mean that I will get cancer, just that it increases the likelihood that I will. My biggest hang up right now is that you all know what else increases your odds of getting breast cancer right...injectible FSH. So while I was lucky enough to get pregnant, in the process did I ensure that this little girl will grow up motherless? Did I pass the gene on to her? I was talking about all this with family last weekend and they all told me to go get tested. But I don't know how I feel about it. I can't be anymore proactive than I already am. I got my baseline mammogram at 29, do self exams religiously, and insist that my gyno do exams yearly instead of every 3. So what would it change? But it also raises the question of starting IF treatments again in a few years. At that point I'll be older so we'd probably be moving straight to IVF, which increases the amounts of hormones I'd be putting into my system. For now, I'm not thinking too much about that last question.

So that's where my head has been at lately, it's a little bit of a messy place. And I have one more selfish, shameless thing to do. Every year I run in the K.omen R.ace for the Cure with my family for my aunt. She was first diagnosed 19 years ago and is the strongest lady I know. In fact, she was my rock during all of this IF crap. This year I signed up to show my support but didn't really plan on doing it or doing too much fundraising, I'm a little pre-occupied and I know I couldn't do run a 5K right now. But I decided to walk it (in the spirit of full disclosure, probably the 1 mile instead of the 3) and I want to at least make an effort to raise some money. I know we've all got different causes that are close to our heart and many of you are trying to figure out how to pay for treatments and testing. But if you've got a few spare singles floating around (literally), please consider heading over to my race webpage. (just a warning--in order to get the rest of my fam motivated to donate, I do talk about how I'll be "walking for two").

So to wrap up, sorry for bailing on the comment-athon, thanks for any advice about the breast cancer gene crap, and double thanks if any of you click over to the race.


Jen said...

A big key to breast cancer (any cancer really) is early detection. If the testing won't result in any increased or improved screenings, then there is really no reason that you need to get tested. At that point the decision would be more personal...e.g. are you the type who'd rather know one way or the other or would you rather not know.

Kate said...

Here from NCLM. My grandmother died of BC and my cousin was diagnosed at 33. She got the test and we waited to see what her results were. She tested negative, but if she had tested positive I think I would have tested, as well. Jen is right - early detection is the key.

Anonymous said...

We just went through the BRCA testing with my aunt (who was diagnosed with breast cancer last fall at age 42). Thankfully she tested negative, but my mom and I did a lot of research while we were waiting on the results to come back. There is a ton of information on the web, this is one site we found helpful:

If my aunt would have tested positive, then my mom would have been tested, if she tested postive then my sister and I would have been tested. I'm a huge believe that knowledge is power. Like you said, just because someone would test positively, doesn't mean they're for sure going to have cancer, but it does mean their chances of getting cancer significantly increase - to 60-75% (the general population's risk is 5-15%). You're way ahead of the game by starting baseline mammograms at an early age, but if you choose to get tested, and it happens to be positive, the information would be very helpful for your health care providers so they can be extra thorough in their testing. Since my aunt had breast cancer, all of her physicians (OB, primary care doctor, basically everyone she sees) will perform breast exams on a much more frequent basis - this would have happened to us if we tested positive.

This is way longer than I intended. I hope you are able to process all that you're being given. *hugs*

(here via the braces bunch, btw. and HAPPY BIRTHDAY! a few days late ;)

Shelby said...

I have not been tested either, though my aunt who has had breast cancer did test negative for the genes. I don't think I would even if she were positive, because I, like you, have already had a baseline mammogram, and do self exams and my OB/GYN does exams at every office visit. I'll be getting mammograms as often as I feel necessary as well. Early detection is the key, so if you're good about checking, it shouldn't matter. Though it might be nice to know one way or another. So confusing!!

And happy belated birthday!!

Thanks so much for walking!! I donated, because as I type, my aunt, who has had breast cancer for 11 years now, is in the hospital in Miami. And she may not make it much longer.

Jen said...

I hope your birthday was great!

I don't know that I would get the test. I would just keep up on those early detection tests. Have you had ultrasounds on your breasts? I had a lump that was picked up by ultrasound but not by mammogram. Younger women have less accurate results on mammograms because their tissue is denser (this is what I was told at the time anyway).

Not on Fire said...

I would like to suggest that you decide which would cause you less stress and do that. Personally I would do the testing because I would feel more in control (an illusion I know).

Julia said...

Happy belated!

I would get tested for this reason-- there is a lot of work on BRCA being done research-wise, and it is possible that preventative measures may be found, dietary or pharmaceutical agents that decrease the odds. As is, the phenotype (observable characteristic, getting cancer in this case) is not 100% penetrant, meaning that if you have the allele (this dangerous version of the gene) it doesn't mean you are getting cancer, but it does increase the odds. So if someone finds something you can do to decrease the odds, it would be good to know. In addition, it would be good to know if/when you go to see an RE again. If you are positive, they might decide that it makes more sense to go once very aggressively, get a lot of embryos, and be set for many FETs, for example. It is already the case that in best places the FET success rates are almost as good as fresh cycles, modified only by the defrosting protocol, and those improve every year too. So in a few years you may be able to choose this option. If you are negative, there may be a whole other approach. Knowing these things is important, if only because of the scale of the effort to study them these days-- you never know when someone will find something that can help.
But the most important thing to remember is you didn't do any harm to your child. Even having the allele doesn't mean you will get cancer, and even that is not necessarily fatal. You did what you needed to do to have a family with the best information you had at the time. Now you can get more information, and you can make new decisions for yourself and for your family. If she got the allele too, you will deal with it as well. And again, the pace of science is incredible these days. In 18 years or more, when this question becomes relevant to her, there may well be a pill she can take to turn that gene network right off.

The Town Criers said...

This will just give me something to make fun of you about when I see you in a few weeks :-) The NaComLeavMo thing, that is.

Michell said...

I will agree with everyone else that early detection is the key. As far as the test, I've heard that having it done could/may affect future insurance. If that was at all a possibility, I would skip the test and continue what you are doing.

Lexie said...

As most other posters said early detection is the key. That being said. I was tested after my own mother passed away in 97. I was 24 when I got tested. I am positive for the gene. My Aunt then got tested who was positive for the other gene. Both her daughters were tested 1 was positive 1 wasn't. As far as insurance goes I paid out of pocket for my test about $1000 I wouldn't change a thing.
As far as your OBGYN visits you should go every 6 months to get checked.
It really is up to you when you want or even if you want to be tested.

sara said...

I'm sorry that you've had to deal with this in your family. It is a very difficult battle. It sounds like you are very proactive, which is a big part of prevention. I agree early detection is key. I hope things settle down a little at work, and that you're having a good week. I'll keep you in my thoughts!

Kim said...

That is a hard decision to be tested or not. My mom recently signed up for some kind of pilot genetic screening test for all kinds of things. I van sign up too but have been holding off. I cannot decide if I want to know or not. Good Luck with your decision! NCLM

EricaDouglas said...

My mom and maternal grandmother both had breast cancer. My grandmother was diagnosed at age 70 and lived 12 more years. My mom was diagnosed at age 60 and has been in remission for four years. (I have no siblings). My grandmother and mother were the first people in our family to have breast cancer and my mother, who has a Ph.D in nursing, believes that it's because both of them used hormone replacement therapy after menopause. Anyway, to the point: I'm 28 (was 24 when my mom was diagnosed) and I chose NOT to be tested for the breast cancer gene because, ultimately, it won't change how I live my life. I'm vigilant about checkups with the doctor, not very good about self-exams and in otherwise good health; I don't want to live with a death sentence hanging over my head that I have this gene and I could get cancer at some point. I wish you the best of luck.

Tigger said...

(here from L&F)
My mother was dx'd with breast cancer 4 years ago. Her mother died of it when my mother was 17 - a very long time ago. My mother's oncologist urged her to have my sister and I get tested, to find out if we have the marker. Mom didn't think we should, and neither of us did.

I also discussed it with my doc before deciding and he said "It's a $3K test. If it comes up positive, you're going to have problems with your insurance company because if/when you do get breast cancer it will be considered pre-existing. There's nothing you can do if you DO have the marker, except worry and cease enjoying your life out of fear." I have a very smart doctor. He was right, and I knew it.

I know that it is inevitable that I will get breast cancer at some point in my life. I have fibrocystic breasts, so the only way I'll ever catch it is through my mammograms, which I've had to fight my insurance on because I'm only 30 and have been getting them since I was 27. You just need to have a good doc, one where you can sit down and say "look, family history. I want exams done more frequently." And don't take no for an answer. And don't believe your techs if they say "Well, we see a small something but it's probably nothing so come back in six months" like they did to my mother - she went next door to her doc and demanded a biopsy, which was a very good thing indeed.

Oh, and in response to Julia's post: I think if someone found something to decrease the odds, I'd do it anyways just in case. And if it required that I be tested, I'd do it then. No sense in adding more to the plate than is already there - it's a bit full. :)

sarah23 said...

If one of your aunts is a carrier, her siblings each have a 50% chance of being a carrier. In other words, your parent has a 50% chance of being a carrier. And you have a 50% chance of having inherited the gene from them. So your chances are actually 0.5 x 0.5, or 25%. If your parent has not been tested yet, I think it's probably worth getting checked for.

It actually would change your medical management. Depending on whether it's BRCA1 or BRCA2, you may be advised to get REGULAR mammograms or breast MRIs starting at a certain age. You could CONSIDER surgery to remove the breast tissue (with reconstruction!) and/or ovaries after you are done having your children. These both dramatically decrease your chances of developing breast and/or ovarian cancer.

It is a really complicated issue and I respect your choice for waiting until you are ready to get tested. :)

Sunny said...

Major hugs to you. No advice, just hugs!