Thursday, May 16, 2013

What do Angelina Jolie and I have in common?

So now that you know a little bit more about BRCA...

As I've shared here before, in small snippets, my mother was diagnosed with breast cancer in November 2011.  She quickly began a grueling and aggressive treatment of surgery, endless chemotherapy, and radiation.  It was a long and winding road that came with plenty of tears and scars. But I'm happy to say that today she is cancer-free.

Breast cancer is not a single type of cancer.  There are, in fact, many different subtypes of breast cancer.  The pathology of my mom's cancer indicated that it was triple negative.  Triple negative cancers do not have hormone receptors and hormones are likely what fuels most types of breast cancer.  As an aside, this is the same type of breast cancer that Robin Roberts fought.  Generally, triple negative cancers are more prevalent in younger (pre-menopausal) women, African American and Hispanic women, and women with the BRCA 1 mutation.

My grandmother fought breast cancer twice.  Once in her  60s and then again in her last years.  She was initially diagnosed when the media brouhaha about BRCA first hit.  I remember thinking about it then and wondering if she had "the gene."  But because her breast cancer was diagnosed later in life and the suspected rarity of BRCA genes at the time, it wasn't considered to be likely.

You see where this is going now, right....

So based on my mom's family history and the triple negative status of the tumor, her oncologist recommended that she speak with a genetic counselor and be tested for the BRCA mutation.  If anything, they thought it was possible, though statistically unlikely, that she would be BRCA 1 positive.  To our surprise, she tested positive for the BRCA 2 mutation.  This was pretty heavy news.  But my family faced it with humor and tried to embrace our genetic misfortune.  My aunt was subsequently tested, and she was positive as well.

Which leads me to yesterday's post.... I had to decide if I wanted to know.  And honestly, I didn't have to think about it, because I knew that I did.  Knowledge opens the door to being more proactive.

Before I got tested, I went out and procured more life insurance.  Just in case.  My regular doctor set up a joint appointment for my sister and I with a gynecological oncologist and a genetic counselor back in February.  We had the option of a saliva sample or a blood test, and to my sister's chagrin I said we'd take the Scope.  Swishing a significant amount of Scope and spitting it into a very narrow vial in a tiny conference room without a sink was a comedy of errors.

My sister was paranoid our samples were going to be switched.
As we swished our Scope we were both pretty certain that we'd be positive.

Then we waited.  Eventually I got the call from the genetic counselor and she informed me, rather nonchalantly,  that I also have the BRCA 2 mutation.  A week or so later, my sister found out that she was also positive.  This set in motion more doctor's appointments than I have had in the last decade.  I've spent the last few months meeting with a series of doctors to help me figure this out.  I had the unpleasant experience of a breast MRI and my first mammogram.   I've felt every kind of FDA approved breast implant.  I've sat in the oncology waiting room for, literally, hours and hours.  During one of my first appointments, I knew I was in trouble when a man had set up a full home office in the waiting room.

I'm lucky to have a job that provides me with health insurance*, and I'm lucky to live extremely close to a world-class hospital. At this point, I'm not ready to move forward with prophylactic surgery** so my doctors have set up a more rigorous surveillance schedule.  But I know eventually I will move forward with surgery. Eventually.  The surveillance basically means I'm at the doctor for one test or another every 3 months.  And for me, surveillance isn't perfect.  Surveillance means you're just waiting to catch cancer at which point you have cancer, you know?  So basically all the choices suck... major surgeries vs. feeling like a ticking time bomb waiting to get cancer.

Which brings me to Angelina Jolie's op-ed in the New York Times.  At first I was like, ugh.   I thought about how my family has been quietly dealing with all things BRCA for the last year.  Then one celebrity writes a few paragraphs, and now the media is obsessed.  But ultimately I think it's great that it started a larger conversation about BRCA, breast cancer, and the choice to undergo a preventative mastectomy and reconstruction.  I think it will make it easier for BRCA positive women to choose preventative surgery and reconstruction and have more support in their community.  BUT if you read any of the comments on any of the online media reports of the stories you undoubtedly saw that the internet trolls were out in full force with their negativity and ignorance.  Ill-informed commenters spoke disrespectfully about her body, made jokes, second guessed her decision, or expressed their belief that removal of healthy organs was alarmist and radical.  I don't think they realize the weight of this information on an individual.  Or that prophylactic surgery is currently a medically recommended course of action for women who want to significantly reduce their likelihood of having cancer.  To women who are BRCA positive, this is not elective surgery.  Is a prophylactic double mastectomy really "elective" if the alternative is an extremely high probability that you will get cancer and you know that it can't be caught instantaneously?

The other day someone, who shall remain nameless, jokingly said this to me, "Your BRCA thing has some star power now."  Let's be clear, this isn't "my BRCA thing."  And it isn't just Angelina's.  Long before she wrote an op-ed, women were wrestling with life-altering decisions.  They didn't have the opportunity to write a New York Time op-ed, they were just quietly going to tons of doctor's appointments and trying to decide how best to protect themselves so they can be around for their families.  My family has become pretty well-versed in BRCA and all that it entails.  And while we make jokes about it because we can't sit and cry about it, it's really no laughing matter.  It's pretty serious business.

And when thinking about a gene mutation, I can't help but think of Darwin...

I think I spent more time choosing the words of this post than I have for anything else that's every appeared here.  I have plenty more that I could write about: The specific nitty gritty description of the horrors of cancer treatment.  What I've learned about breast reconstruction.  What I've learned about what is scientifically proven to help reduce breast cancer risk (it's not special water or green tea).  But for now, I'll leave it here.  I'm pretty much an open book about all of this, so if you are you reading this and have a question, please leave it in the comments.

* BRCA testing is expensive, partly because of Myriad Genetic's patent and monopoly.  A full spectrum DNA test is the most expensive (around $3000).  But if there is a known BRCA mutation in a family, then they can do a less expensive test (a few hundred) to look specifically for that mutation.  Due to an administrative snafu, my insurance company initially denied paying for my test.  But if I was a super hero, my super powers would be navigating bureaucracy and doing paperwork, so it was all straightened out.  My insurance covered the test because my mom was BRCA+ thus deeming it "medically necessary."

**This blog post from the Pink Lotus Breast Center does a really good job of laying out the options for someone who is BRCA+.

6 comment(s). Tell me what you think!:

princessquiltandknitalot said...

Well stated Libby, I am in Cedar Rapids and would like to meet for coffee talk more and knit. I plan to go to FORSE conference next year in Philly.

Meagan @ The Clanahan Fam said...

I'm not sure I even know what to say. Except that I am proud of you and your sister (for whatever that is worth) to be proactive, get tested, and start planning for the future. We will be thinking of you during these 3 month appointments and will stand in support of you when the time for surgery comes. Hugs to you all.

RadioactiveUnicorn said...

Well that sucks.

Aleta said...

You and your family are in my prayers. Thank you for sharing this, as difficult as it is to handle... Your post was an eye opener and far more informative than anything the media will offer for knowledge.

Anonymous said...

Good luck. You've obviously thought very carefully about your options.

Kelly Bronsink said...

Good thoughts and energy will go your way. Way to be so brave, and to teach so much to your daughter. You are a great example.

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