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.

Breast feeding helps…but you have to have breasts!

The results of a large study recently published in The Archives of Internal Medicine were released this week, creating a substantial buzz within research and breast cancer communities.  Although there is still extensive follow-up research that needs to be done to ensure that other behaviors and factors are not causing this correlation, the study appears to show that among premenopausal women who are at higher risk for breast cancer because of a family history of the disease, breast-feeding has an incredibly protective effect.  The author of the study, Dr. Stuebe, even reported that the effect of breast-feeding could be as strong as that of Tamoxifen, the “chemoprevention” drug that is often given to high-risk women to lower their risk for breast cancer.  Breast-feeding was ONLY protective among women who are premenopausal and had a family history of breast cancer. So if you’re old and/or have good genes, feel free to break out the formula (although I can’t promise that your kid will be better off…).

Read more details here:

http://www.nytimes.com/2009/08/11/health/research/11cancer.html?_r=1&ref=health

http://news.yahoo.com/s/hsn/20090811/hl_hsn/breastfeedingmaylowerbreastcancerrisk

This is a really interesting and significant finding and if further research verifies it, it could benefit a lot of women.  I can’t help thinking, however, of all of the mutants like me.  Our thought process tends to differ from that of normal women and even other high-risk groups.  As soon as I read these articles, I started to wonder if  other BRCA women were sitting at their computers running over some of the same questions in their head.

First of all, what about all of the young women who have already HAD prophylactic mastectomies??  What does it mean for them?  In an ideal world, they would have had this little token of info as one thought to consider when they were deciding whether or not to have the surgery, but now it’s too late for that.  What kind of effect will not physically being able to breast-feed have on us?

Then, I of course come back to my personal journey towards ditching my boobs.  When I decided I was definitely going to have the surgery, but just hadn’t decided when, I had a long, emotional conversation with my boyfriend.  As I bared my soul to him, I solidified my own confidence in my decision.  I heard myself saying things and as I said them, I realized they were, in fact, true.  I can live with out breasts, but I’m not sure I can live with breast cancer. No one in my family has managed it yet.  I never even liked my breasts that much anyway.   I know I can learn to love my body in whatever new state it encompasses. But…but…but… the ONE thing I kept coming back to was “I have a hard time with the fact that I won’t be able to breast-feed my kids.”  Breast-feeding, to me, has always been the most beautiful, organic connection between mother and child- her body literally sustaining her tiny being a while longer before they have to become entirely physically seperate for good.  I wasn’t sure I could deal with feeding my baby formula.  It upset me.

And now, now this.  Now I’m second guessing my decision to have the surgery first and then kids.  Because, after all, maybe I can have it all.  Maybe I can breast-feed my kids, lower my risk for breast cancer at the same time, and THEN trade them in for prettier (slightly bigger) ones.  But it frustrates me that one research finding can make me question something I’ve spent years deliberating.

I think, in reality, the “buzz” that breaking news like this creates sucks people, including me, in.  I think, in reality, that this changes little to nothing about my current circumstances.

But I can’t help wondering…will my baby know I’m jipping him/her?

I’ll never know.

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

I wish I could FORCE you…

but all I can do is recommend.  Go to the FORCE Conference. It’s the best place in the world to get all of the latest information and resources on hereditary breast and ovarian cancer!

Conference Website

My sister and I at the 2008 Conference

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)!

Damn the Man, save lives.

I’m having one of my “I hate Myriad” moments, and as unreasonable as these moments may often be, I felt the need to share.  Today on my “BRCA” google alerts, an article came up showing how Myriad’s stock shot up because of recent research that came out which may result in doctors recommending that more women be tested for the BRCA mutations.  I mean, I know that it makes sense that their stock would go up if their product is going to be in higher demand, but really, honestly, who patents a gene?? I still don’t even understand the concept fully; all I know is that patenting genes inhibits research AND it allows Myriad to keep the cost of the full BRCAnalysis at $3,000.  They can charge whatever the F#$* they want if they own the friggin’ gene people!  How else will we figure out our sadly mutated condition??   They also MARKET the test, which drives me insane.  Putting commercials on that make everyone think they should have this test is absolutely ludicrous.  This is not candy- this is a test that should only be recommended by your doctor and a genetic counselor after very thorough intake.

I feel like this is an exceedingly unfair assesment of Myriad, especially since they did pinpoint the gene and make the testing available, which has changed many lives.  But they’re definitely taking advantage of their position to make lots of money, and this just seems silly when you’re talking about profiting off of people’s misfortune.  This is why privatized healthcare is so bizarre!  It just doesn’t make sense that the sicker people are, the more money people make.  That just CANNOT lead to a fair system in which everyones’ health is top priority.

I apologize for the rant.  Maybe I should do some real research and write something a little bit more coherent.  Oh well, I deserve an angry outburst now and then.

Research Rocks

You know what rocks?  When researchers discover valuable information. Like…  Researchers studied a group of women who had been diagnosed with triple-negative invasive breast cancer at or before the age of 40. None of the women had a strong family history of the disease,  but it turned out that 11%  had BRCA mutations.  This is important because now, in the future, having early-onset breast cancer could be a criteria for qualifying for genetic testing.  The genetic testing then alters the course of treatment the woman recieves,  which could improve her chances at survival.  woohoo!  Read the real research, not just my shoddy interpretation, here:

The Prevalence of BRCA Mutations Among Young Women with Triple-Negative Breast Cancer

BRCA Umbrella

I just discovered this new social networking site for us BRCA mutants.  It’s really great!  You can connect with women all over the world who are facing similar challenges and decisions.  AND the design is really cute.  What more could you ask for?

Check it out at http://brcaumbrella.ning.com/.

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!