Wednesday, October 5, 2011

Think Pink: BRCA Edition

Oh October. Breast Cancer Awareness month. This time of year you simply cannot go to the store without seeing PINK. From toasters to pistols to Mr. Spongebob himself. It's everywhere. And all that pink serves as a gnawing reminder to me. Although the month of October shines a pretty big spotlight on breast cancer for everyone else, I've got breast cancer on my mind all year long.

I've been digging through my archives trying to get a better grasp on my own fraught relationship with cancer, with my breasts and ovaries, with my mother. From finding out that my mom had cancer, to the ethics of patenting genes (one that happens to run in the family), to her treatment, to pink rodeos, to wig humor, to pink pyramids (both here and here), to ululating Egyptian survivors, it's been quite the roller coaster ride. And then I hopped off my mom's roller coaster and got on my own. From getting the results back from my genetic testing to starting the screening process... it's been an interesting ride to say the least.

It's been nearly two years since I found out that I have a heightened risk of breast and ovarian cancer. From my interactions with doctors and nurses to friends and acquaintances, I've had the chance to answer some difficult questions. In no particular order, here are some of the most oft asked questions and/or remarks someone has after finding out I'm BRCA2 positive.

We'll begin with the most common and sometimes most infuriating...

So you're BRCA positive? Awesome, free boob job right?
Yes and no. While insurance companies generally cover the costs associated with mastectomy and reconstructive surgery, these surgeries do not equal a boob job. In most cases, reconstruction involves more than one surgery. It's take months and sometimes years before you have completed reconstruction. You are left with disfiguring scars that run from your nipple to your armpit. If you're lucky (like my mom) you can keep your original nipples. If you're not, say goodbye to real nipples and hello to nipple tattoos. Yup, you read that right... nipple tattoos. You can also say goodbye to sensation in that whole area due to nerve damage. Sound like a good deal? I don't think so.

So you have an 87% chance of getting breast cancer. That means there's a 13% chance you won't get it. Why focus on the negative? You could be one of the lucky ones.
Here's how I see it. What would you do if someone told you that you had an 87% chance of being in a plane crash over the course of your lifetime? In the best case scenario, you get lucky and don't get in a plane crash. In a less than best case scenario, your plane goes down but you survive. You suffer some broken limbs that will eventually heal and a bad case of PTSD. Worst case scenario, your plane goes down and you die. It's sure convenient to travel by plane, but I've decided I'd rather not gamble with my life. I'll be traveling by car, train and boat from here on out.

So you're thinking about getting a preventative mastectomy eventually. You want to remove healthy body parts that may never develop cancer? That seems crazy.
To you maybe, to me not so much. I have a nearly 90% chance of getting a disease I know I can prevent if I get this surgery. What's crazier? Getting cancer when you didn't have to or having a surgery to avoid that? Surgery sucks, but cancer takes the cake. I've seen it up close and personal and that is something I want to avoid at all costs.

What if you get surgery and die of something else?
Well, that's the point isn't it? To not die of breast cancer. I'm not trying to cheat death. I just don't want to spend whatever time I have on this earth dealing with breast cancer.

So if you had brain cancer, would you remove your brain?
No you idiot, because you need your brain to live. I'll remove my breasts because I can live (both figuratively and literally) without them.

But you're so young. Why worry about this now?
I am young and I really wish I didn't have to worry about this now. Last week, a mother of two emailed me and told me her story. She found a lump in her breast while she was pregnant. She was 32. I've heard countless stories similar to hers. Young women get breast cancer and young women with the gene especially get breast cancer. Recent studies have shown that they get cancer an average of six years earlier than the previous generation. When breast cancer survivors find out that I carry the gene they either urge me to stay vigilant with my screening or just jump the gun and tell me to cut those suckers off. I appreciate their perspective. If I'm going to listen to anyone, it's going to be them.

Why would you continue to have children when you you know you can pass this gene onto them?
This one takes me aback when I'm faced with it. Frankly, I'm not sure how to answer. It's maddening. It's painful. Worst of all, it's conflicting for me. For now (to make myself feel better) I cling to the fact that I've been "blessed" with three boys. I'm not sure how I'll feel if I ever get the little girl that my heart yearns for.

Most often asked by my doctors: so are you done having kids yet?
I see a gynecological oncologist every six months or so. She's the one in charge of making sure I don't get ovarian cancer. She's a tiny little Asian lady with a very gruff personality. She's always eager to know if I'm done having kids yet so we can get those ovaries out. In many ways, ovarian cancer is more frightening than breast cancer. It's very difficult to detect and once detected, it's usually pretty well advanced. I can see the look of exasperation on her face every time I tell her no. It's difficult explaining deeply personal family choices to your close friends, try doing it to a doctor you hardly know. It's not fun.

And speaking of deeply personal family choices...

I've been confronted before about why I gave up graduate school and decided to have children so soon after getting married. Mostly by my husband who wanted me to go to school but eventually took a leap of faith with me (after much begging and pleading on my part). I wanted babies more than anything in the world. It was inexplicable. It was frightening. I felt a real sense of urgency about starting my family. I never knew why but it was a feeling I wanted desperately to ignore but could not.

Knowing now that my ovaries essentially have an expiration date on them (35 years old according to the medical community, but obviously the decision is mine to make), I'm glad I got a head start on my family. Many women are not as lucky as I am. Many women learn they have the gene later on in life and are forced to remove their ovaries before they have a chance to use them (something this woman grapples with in this movie trailer). It's a difficult decision to make to begin with but I can't imagine losing both my ovaries and my hopes for a family in one single blow. There is a reason I started having kids at an early age. The pieces of my life's puzzle are coming together. I'm grateful for each small glimpse I get of the big picture.

Phew. Heavy stuff. On a lighter note, in celebration of having completed my first mammogram last week, I think I'll make these "mammo-graham" desserts. Enjoy the rest of Breast Cancer Awareness month!

1 comment:

Cherise said...

You are awesome Margaret! I love that you are so open with this as so many of us need to be more aware! I think you are fantastic!!