A BRCA Spin on Love and Relationships

I had my very first request for content from one of my readers!  The fact that I even have “readers” made me ecstatic to begin with, so of course, I’m going to fulfill this young man’s request, especially because it’s a really good one.  He is a man who’s girlfriend recently found out about her BRCA mutation, and he wants to know how to move forward and support her and what the implications are for their relationship.  Read on…

When I first found out about my BRCA status, an extremely callous doctor said something horrific to me.  He told me to go out and find a guy to marry me and to have kids quick so that I could get my breasts and ovaries removed as soon as possible.  He didn’t, however, offer me up any willing and able bachelors to whom I could say, “Hi, I’m Lisa.  You’re cute and I need to have babies fast because I’m probably going to get cancer.  So will you marry me??” You can read more about this experience in a piece I did for the FORCE newsletter here: http://www.facingourrisk.org/newsletter/2008spring/voices.html

After this experience, I was completely scarred.  Because this idiot planted the seed in my mind, I was sure that no one would want me.  And the worst part was,  I didn’t think they SHOULD want me.  I remember thinking “Well if I were a guy, I don’t know if I’d be able to deal with that if a girl told me.” Or “I’m asking for so much- how can I expect any guy to handle this when he could just have a normal girl?”  I thought that I should walk through life wearing a warning label in order to be fair to those who may decide to love me.

I now realize that that entire link of thinking is completely wacky, and I’ll tell you about what happened instead of the above scenario.

A little over two years ago, I met up with an old friend who I had dated for a brief period in high school.  In the course of one night, I fell madly in love with him.  All of my precautions and worries and everything else went out the window. I knew that no matter what, I wanted to be with him.  Luckily enough, he felt the same way.  In the beginning of our relationship, I avoided the “mutation” talk.  However, this guy had known me my entire life.  He knew that I lost both my mother and aunt to cancer, and he knew I volunteered for FORCE.  What he didn’t know were the statistics.

So after a few months, when I really knew for sure that it was for real and we were going to dive into something bigger than ourselves, I told him everything. Through a haze of tears and awkward pauses I let it all flood out- statistics, surgeries, emotions- everything laid out.  And I gave him an out.  I said “It’s ok if you can’t deal with this. I will understand.”  In a way, I was being honest.  I wouldn’t blame him for walking away, especially because I do not want to spend my life with someone who cannot handle the seriously heavy things that every couple at some point must encounter.

After I had told him everything, he looked dazed.  I looked at him expectantly and he said something like, “Well, this is much worse than I thought.  But I didn’t know you could do something about it.  So good- you’ll just do something about it.”  He was referring to me having a prophylactic mastectomy.

I couldn’t believe how amazing he was.  Of course, your girlfriend having her breasts removed is not the ideal situation, but he assured me that the most important thing was that I LIVE, and that, in reality, is the bottom line.

We have low moments, where I worry he won’t think I’m beautiful anymore. He won’t think I’m sexy.  I’ll get sick and leave him all alone.  It is not an easy thing by any means, and I constantly struggle with what I will look like after the surgery and how both of us will feel about my body.  But he assures me that whatever happens, what matters is that we’re in it together, and really, that’s the bottom line.

Three important things to remember:

1. You have to be supportive of her in whatever she decides to do.  You may not always understand or agree, but you have to trust that she is doing what she feels is best.

2. Reconstruction these days is often AWESOME.  If your girlfriend is thinking about surgery, her boobs will most likely look really good when it’s all over.  No, they won’t look the same- but the scars will fade in time, and no matter how old she gets, they will NEVER sag. J

3. Having a BRCA mutation is NOT a death sentence AND many people have genetic mutations and simply don’t know.  If you ditch your girl for a more “normal” one, chances are she’s got something that runs in her family that they just aren’t aware of.  Or, maybe she’ll get hit by a bus tomorrow…you just don’t know, so why make decisions based on what “might” happen?

In reality, there are times when my boyfriend and I are both scared, but life is full of scary situations, big decisions and a constant effort to make the most out of the little time we have.  If you’re anything like me, you’ll figure out that the best way to do that is to grab onto love and hold tight, if you’re lucky enough to find it.  Once you do that, whatever happens, when it comes to it, you’ll do what you have to do.

PARP sounds cooler than BRCA

If you’ve been following the news at all, you know that a new class of drugs called “PARP inhibitors” are being talked about like crazy. Not only have they been shown to improve outcomes drastically for women with breast cancer (and men with prostate cancer), but they improve outcomes specifically for women with BRCA mutations or triple-negative breast cancer (the most lethal type)!  85% of women with the BRCA 1 mutation have triple-negative breast cancer (as if the mutation weren’t enough), so this is a double plus for these women!

Of course, these results are still preliminary and more clinical trials will need to be done, but this is pretty exciting stuff, people.  I’m going to go out on a limb and say that this may end up being a breakthrough in the same realm as the HER-2/Herceptin amazingness.  I can’t be sure…but it seems promising.

Here’s how PARP inhibitors work (in really simple, non-medical, “people-who-don’t-know-that-much-about-science” speak):

All cells have systems for repairing broken DNA. PARP, BRCA1, and BRCA2 are all part of that system.  Basically, when DNA is broken, it calls up these guys and they come with their tool kits and hammer it back together.

Women with mutations in BRCA1 or BRCA2 have to rely much more heavily on PARP to fix the DNA in their cells, because BRCA1 or BRCA2 has a broken leg and can’t be of much help.

While all of this happens in normal cells, it also happens in cancer cells.  Normally, chemotherapy damages the DNA in cancer cells but then PARP comes in and fixes some of the damage, making chemotherapy less effective.  PARP inhibitors give the PARP repair truck a flat tire, preventing PARP from getting to the job to repair the DNA damage caused by chemotherapy.  So the cancer cells simply can’t figure out a way to repair themselves, and they die!  Woohoo! We like that.  Death to cancer cells.

So that’s pretty much it.  To read some real, actual medical information on PARP, here are some sweet links!

Peace out (to my readers, if there are any,  AND to cancer).

FORCE: PARP inhibitor research presented at 2009 ASCO Conference.

Reuters: New breast cancer drugs block cell repair enzyme

Science of PARP

ASCO: New Drug Class Promising in Breast Cancer

Courage or Cowardice?

Let me begin this by saying that I have the greatest doctor ever.   She’s really amazing and I feel so lucky to live where I do and have access to such incredible medical care.  I have complete trust in her care and opinions, which I think is the most valuable thing in the world!

So I had my appointment with her,  my “boob doctor,”  a few weeks ago.   She reviewed my many recent test results (MRI, mammogram, sonogram..), felt me up a little, and then told me everything looked “Great!”  Then, she did what she always does as a fabulous doctor, which is ask me, “How are you doing?  Do you have anything else you want to ask me?”

I had been waiting for this moment for months, and I had a carefully-prepared paragraph sitting in my brain, just waiting to hit my tongue.  It would have begun something like,” I’m fine, but I decided I want to cut my boobs off..”

Instead, I heard myself say, “Everything’s fine!  What are your thoughts on soy?”  Now, the reality is that I really DID want to hear her thoughts on soy, but that was SO not what I had planned on asking.  The refrain about being ready for the surgery was playing over and over and over in my head like a broken record, and yet I couldn’t, no matter how hard I tried, get the words to actually leave my mouth.

After I left, I couldn’t decide if what had happened was me following my heart (which I would consider courageous…) or if I’m simply too much of a coward to get this whole thing over with!  I mean, I know that I don’t want to do this until I’m really READY, and I think what my inability to communicate might have been telling me is that maybe I’m not as ready as I had originally thought.  In which case, I’d say I did the right thing.  Because this is not something you should do if you’re not completely emotionally ready for it.

I can’t help thinking, though, that maybe I’m just too much of a coward.  Is it possible, after watching two of my closest relatives suffer and die from the effects of cancer, that I don’t even have the guts to deal with a couple of ugly scars…

I really don’t think that’s it, and I certainly hope not.  I think I just need to do this on my own time. We’ll see what happens in 6 months at my next appointment…

In the meantime, feel your boobies (or have someone else feel them for you)!

To keep, or not to keep?

That is the question.

I have an appointment with my gynecologic oncologist on March 30th and I’m already thinking about it ALL of the time.  I saw her almost a year ago, and when I told her I thought I’d wait on having a prophylactic mastectomy until I was 30, she basically told me I was crazy.  After I gave her all of the information about my BRCA 2 mutation and my family history, she said “You need to get rid of your breasts by the time you’re 25.”

I was so shocked!  I mean, I don’t even particulary LIKE my breasts, but still, this was not what I expected at all.  Apparently they find that breast cancer in BRCA families tends to hit 10 years earlier with the next generation, and since all of the cancer in my family has been exceedingly young…

I’ve decided to have the surgery (as you can tell from the article I posted last time!), but I haven’t decided if this appointment, on March 30th, is going to be the day that I say “Yes, send me to a surgeon for a consultation.”  I have 3 weeks to make up my mind.  Wish me luck!

I’m famous!

Check out this story I’m featured in on ABC News.com!

http://abcnews.go.com/Health/CancerPreventionAndTreatment/story?id=6976928&page=1

Unfortunately, they didn’t include much information about why people decide to have these surgeries like the actual risk statistics and the statistics showing how much these surgeries cut your risk.  Also, living without a stomach and living without boobs are not exactly comparable..

My last complaint- did they have to call it “Going under the Knife”??  It makes it sound like we’re volunteering to lay on a butcher block, not having skilled surgeons operate on us!

All of that aside, it’s pretty cool to be in the news!

B, R, C, A, What??

A few years ago, my mother lost an ugly ugly battle with pancreatic cancer at the age of 49.  Shortly after, I lost my aunt, my mother’s sister, to metastatic breast cancer.  She was barely 40 and had fought the disease for almost six years.  Somewhere amidst all of this cancer and suffering, I found that I had inherited what is often referred to as “the breast cancer gene.”  

BRCA 2

It’s confusing, hard to pronounce, and it places my risk of developing breast cancer within my lifetime somewhere between 80 and 90%.  Practically a guarantee.  Not to mention the extremely elevated risk of ovarian cancer and a slightly elevated risk of the almost-always-deadly pancreatic. 

My life is now all about hereditary cancer.  Partially because my body leaves me no other options, and partially becuase I’ve chosen to make it that way.  My job is about cancer, my volunteer work, my writing, THIS BLOG…

The truth is, as I dig deeper and deeper into the world of BRCA mutations, I hear the same things over and over.  The most common, I’d say, is that women refer to their bodies as “ticking time bombs.”  I understand this comparison, and I’ve often felt like that myself.  But I’ve decided to refuse the notion that my body is against me.  I mean, in reality, we’re all ticking time bombs.  The movement of the hands is just a lot louder for some…

I’m not a doctor, or a researcher, or a genetic counselor.  But I’m hoping, maybe, that someone  like me will stumble upon this tiny page amid trillions, and will, for a moment,  gather strength from the meandering musings of a fellow mutant.