Monday, August 25, 2008


Hi. It's Monday and I just had, I think, the laziest weekend in the history of the world. Anna was at her dad's and I spent almost the entire weekend on the front porch reading "Pretty Is What Changes" by Jessica Queller. Very thought-provoking and very well written, this book is the story of a young woman (34) who decides to take her destiny into her own hands: because of her family history of breast-and-ovarian cancer, she takes the BRCA-1 test to determine if she has the gene-mutation that will indicate whether she is likely to develope one (or both) of those cancers at some point in her life. (I've written about this woman and this test before, after having heard her on NPR, but I finally got to read the book.)

Her test came back positive, meaning she had an 87% chance of developing breast-cancer and a 44% chance of developing ovarian cancer at some point in her life. She had, just a year prior, watched her mother suffer horribly at the end of her life. Her mother had beaten breast cancer but was diagnosed with (and ultimatly died of) ovarian cancer. Jessica certainly did not want to go through the same thing. After MUCH soul-searching and gathering many professional opinions and much information, she decided to under-go a double mastectomy. As one of her doctors told her "Breast cancer is the only preventable cancer there is." WOW.

Obviously this is very new, very cutting-edge science. Five years ago, this test was pretty much unheard of, and if you'd told your doctor that you were considering having your breasts removed as a preventative measure, he'd have laughed you right out of his office.

But now the technology is there to know. Some people want to use whatever information is available to them, others do not.

There are two distinct camps of women who are likely to test positive for the BRCA-1 gene-mutation: Those who do not want to know, or the "ignorance is bliss" camp. They would rather live their lives fully without the burden of knowing that it was most likely just a matter of time until they developed breast cancer. They prefer to let nature take it's course and deal with it if and when they are diagnosed.

Then there is the camp to which Jessica Queller belongs. She chose to take the test to find out what the odds were, and when it came back positive, she made the heart-wrenching decision to take fate into her own hands by doing the one (very drastic) thing she could do to eliminate the chance of developing breast cancer. She will, by the way, also have her ovaries removed once she turns 40; she wants to have a child first. Having removed all her breast tissue (she did undergo reconstructive surgery and has implants) she has reduced her odds of developing breast cancer in her lifetime to 1-2%. The average NON BRCA-1 positive woman has around 10% chance of developing breast cancer.

Which camp am I in? After reading this book, I am further convinced that for me, I want to know. I have my annual exam next week and I am going to arrange to take the test as soon as possible. It's amazing to me that we have the technology to find out, and furthermore, in this one instance, to be able to take control of our destiny and change it. Sign me up.

What do you think? If you knew you had a very high-risk of having the gene that caused cancer, and if you had the chance to find out if you DO have it and could then do something to prevent it, would you?


jpogue said...

Boy, that's a tough one. I guess I can't really even fathom it since it doesn't pertain to me. But, having all my female parts removed before anything else went wrong I guess fits into that same category. I feel much relieved to have them gone.

I've never known anyone who was REALLY satisfied with reconstructive surgery - and I know quite a few women who have had it done. After talking to them, I'm almost glad I wasn't a candidate for that because I probably would have done it. There's definately a "sense of freedom" with not having boobs (most days I love it!) but it's nice now that I have my "good" boobs from Canada, that when I want to look nice that I have them. They're comfortable and much better than the generic crap that's available to women from specialty stores.

I'm going to be very interested to see what everyone has to say about this!

Anonymous said...

I would for sure opt to find out..and If positive I don't think I would hesitate to have them removed....altho, that was hard to type much less do!I guess we never really know until we are faced with it. If I could live without these nasty cancer lungs I would sure have them removed. Sheri

jpogue said...

So Kate, if you find out you have the gene, what would you do????

kate said...

(Mom, move away from the computer if you aren't ready for the answer).

I wouldn't hesitate to have a mastectomy. To me, if you're done having children, why keep 'em when they are essentially a ticking time-bomb? Ya know? If I have that gene mutation, living with the constant fear of knowing that it was a matter of WHEN, not IF...that would be intolerable.

I would do reconstructive surgery, though, and the good news is that now, they can take FAT FROM YOUR STOMACH and make boobies with it! ha! That's like winnin' the lottery, right there! I KNEW I was storing this fat for a reason.

Anonymous said...

I never thought about it..there are tons of ways to go...I'm not attached to my boobs though.

Anonymous said...

fat from your stomach..really...

does insurance cover??

jpogue said...

Yes, they take fat from your stomach or legs, and yes, insurance covers reconstructive surgery. BUT you'd want to talk to several people who've had it done. My oncologist's nurse just had it done after her second bout with BC and she's not really happy and told me she wished she hadn't done it. So before you have 'em cut off, make sure you're well-informed about reconstruction. They also don't look terribly real and quite painful to do as they cut away most of the skin from your chest then place "balloons" under the skin that's left to stretch it to the size you need. It's not like having implants.

Dee said...

Reading Jodi's comment-----OWWWWW!

Kate, I'm perfectly capable of hearing these things. It would be a difficult decision, and scary ! That's huge, but the fear of getting breast cancer in the future is worse. Any time there is a medical scare, not knowing and the constant fear is worse than knowing.
Good luck with your exam.

Whosyergurl said...

I have a friend who just went through this stuff. First, she had breast cancer in one breast and tested positive and so she had a double mass. ugh. Then, she had reconstruction and LOVES the way they look- she wanted to show me & I said, "no thanks, I'll pass." :-)
LOVE your red shoes!

stf said...

"if you'd told your doctor that you were considering having your breasts removed as a preventative measure, he'd have laughed you right out of his office."

he might. She might not

a friend of mine's doctor here in Finland is female. She herself (the doctor) had a double masectomy for this precise reason and recommends it to patients who have a close relative who has died of breast cancer. The doctor might also have had a hystorectomy but I'm not 100% sure of that.

I think I would have it done. I'm not sure I would go to all the bother of having major reconstructive surgery if I had my breasts removed though as you wrote "hey can take FAT FROM YOUR STOMACH and make boobies with it!" well I might consider it for all the wrong reasons :)

I've not heard of the test being done here in Finland though.