TOMORROW!

Like many, I first heard about the BRCA “Breast Cancer gene” when Angelina Jolie used the New York Times to announce her decision to have a bilateral prophylactic mastectomy after she was genetically identified as a carrier of the BRCA gene mutation. She told the world that she’d had her own breasts removed because they were ticking time bombs for breast cancer. 

So maybe some of the world mourned Angie’s boobs for a minute, but this was the right choice for her. And man, did you see her in Maleficent a couple years later? Her plastic surgeon got it right!!!! 

But I digress. 

Angie’s announcement started a world-wide conversation about genetic testing. 

How much knowledge is TOO much knowledge?

Are we playing God with all of this?

And what would you do?

But more importantly, women around the world became empowered with the knowledge that they have options! We can have genetic testing and make informed choices about our bodies to reduce our risk of getting some types of cancer. 

Then it got personal. When breast cancer crashed into our lives for the second time, my mom’s physician recommended genetic testing. Mom tested positive for the BRCA mutation, and then I tested positive as well. Without hesitation, I took the radical route and chose the prophylactic mastectomy. The adventures (and misadventures) of that journey haven been chronicled in this blog.

Not everyone who tests positive for the BRCA mutations opts for the radical surgical options. A BRCA positive diagnosis can still be empowering without surgery because it allows for insurances to cover more frequent mammograms and additional cancer screenings. Early diagnosis is key to surviving breast cancer!

The lesser-known risk that comes with a BRCA mutation is an elevated chance of getting ovarian cancer. The average woman has about a 2% chance of getting ovarian cancer in her life. Someone with a BRCA mutation has something more along the lines of a 40-60% lifetime chance of getting ovarian cancer! And ovarian cancer is ugly and hard to treat. Early detection drastically increases the survival rate, but ovarian cancer is often detected late, at a point when successful treatment options are limited. 

The answer? Take out the ovaries, too! That’s the procedure I will have tomorrow. I am opting for a slightly lesser invasive surgery than originally planned. We’re only removing some of the lady-plumbing, but it will get rid of the hormone-generating cancer-makers that the ovaries can be. 

As a part of the procedure, I am also having some other annoying growths removed that have been wreaking havoc on my system. They have been biopsied and are benign, but will thankfully be evicted along with the ovaries. 

I am not worried about the procedure. It’s outpatient, it’s laparoscopic. It will be fine. I’ll be down for just a couple weeks. I am also not worried about losing my eggs, and thus the ability to have any more biological babies. That ship has SAILED and I am very content with the children I have in my life already. 

I am, however, TERRIFIED of the symptoms that will come after the surgery, the symptoms that come along with surgical menopause. Normally, a woman’s estrogen tapers off gradually. Removing the ovaries removes the estrogen COLD TURKEY! 

BRCA-informed doctors have mixed opinions about oral estrogen and other hormone replacement therapies. Why put estrogen back in your system when the goal of surgery was to remove the cancer-causing organs and the hormones they produce? We're going to try and figure out what makes the most sense for me.

Without ovaries and their estrogen, it’s an instant trip to old-ladyville. Hot flashes and mood swings are nearly guaranteed, as well as other other unpleasant things like loss of libido and depression. 

YAAAAAAAASSSSSS! Par-tay time! 

(In case you missed it, that was me trying to pretend to be excited about all of this.) 

Snark aside, I am so incredibly thankful that I can face my elevated risk of cancer empowered. I am grateful to have informed, forward-thinking doctors who support and educate me on this journey. I have so much gratitude! I know that while my family will have to take care of me now for a couple weeks, (and then deal with my mood swings for a few months after!) they WON’T have to care for me through chemo and radiation and all of the scariness that comes with breast and ovarian cancer. 

Tomorrow morning, 11AM. Please send positive juju in whatever form you believe in sharing it. Low-sugar desserts and Netflix recommendations will also be greatly appreciated ;) 

Do you know your risk of hereditary cancer? The community and information at FORCE, www.facingourrisk.org, has been an incredible resource! Please don’t hesitate to chat me up if you would like more information. 

Excuse me, but this isn't quite what I ordered...

So you know the adage, "If you don't have anything nice to say..."

That's where I have been for the past 9+ months since my reconstruction surgery. 

I started this blog to share my BRCA journey with others, to share the non-movie star version of choices related to hereditary breast and ovarian cancer.

I wrote in a previous post that despite hesitations, I finally opted to have breast reconstruction after 2 years of having nothing on my chest post-mastectomy, simply because I was tired of stuffing my bra to make shirts fit right. I wanted to be able to wear a bathing suit with confidence. I wanted to not have to explain my inverted chest to anyone. And while I had enjoyed the freedom of the flat chest (wahoooo for spaghetti straps!), I knew it was time to be put back together.

Unfortunately, it didn't turn out as planned. 

I asked for something small. For maybe some nice, full B-cups, and this is what I got:

Immediately after surgery, I knew it was too much. I read about healing and swelling and having patience, but I still just knew, B-cups, these were not! Two months later when I went to buy new bras, the cold hard truth was revealed: 36DDD.

I saw the surgeon to express my disappointment. She told me my options - I could have surgery again to pull the implants out immediately, and then wait 6-9 months to heal before trying again, OR keep them for 6-9 months, and have the entire reconstruction redone in one procedure. 

I opted to keep them, which has only reinforced my opinion that it's just too much. I know plenty of ladies pay $$$$ to have DDDs. People often use words like 'proportionate' to describe what was given to me, but I'm just not happy with them. Shirts are too tight and even simple V-neck or scoop neck tops end up looking sleazy because there is just SO. MUCH. TIT. 

In the end, it's my body and I have to be comfortable in it. And these things are so NOT comfortable. If I had to choose between keeping these DDDs and the post-mastectomy NOTHING, I'd rather go flat. 

Thankfully, I don't have to make that choice, and I get to have a re-do on the reconstruction. This time last year I was so excited about the potential of finally being DONE. The idea of more procedures doesn't excite me, but I am ready to try again.

Third try's the charm?

It's not just about the boobies.

The name of the gene mutation, BRCA, is somewhat misleading. It is most widely known as the BReast CAncer gene, but having the BRCA mutations also put people at a higher risk of other types of cancer, including melanoma and ovarian cancer.

The average woman has a 1.5% chance of getting ovarian cancer.  A woman with a BRCA mutation closer to a 45% chance of getting ovarian cancer. 

Because of a lack of effective screening options, 62% of ovarian cancer diagnoses occur AFTER the cancer has metastasized. So really at that point, it's a battle to stay alive. Startling facts about ovarian cancer from brightpink.org: 2 out of 3 women who are diagnosed with ovarian cancer will die from it.

Many women who opt for prophylactic mastectomies also have a preventative oophorectomy and hysterectomy to remove the ovaries and uterus as well. My geneticist and the plastic surgeon both recommended that I take care of those surgeries first, but my OB/GYN has suggested that I hold off for a few more years in order to keep my hormones flowing. The majority of women, even with BRCA mutations, don't get ovarian cancer until they are closer to menopause, so I feel okay with waiting until I'm 41 or 42. 

I'm a fan of my estrogen. I'm also a fan of my sanity. Being put into surgical menopause by having my reproductive/hormone generating organs removed isn't something I'm ready to do. Surgical menopause at my age could easily result in all kinds of crazy side effects, including severe depression. 

I know from the outside, it could seem a little backwards that I'm willing to have surgeries that will permanently alter my outward physical appearance, but I'm not willing to have a surgery that no one will even notice. I'm still working on making sense of that one, too.

You could cut glass with those things...

Not that I'm obsessed with Angie or anything...

But Hollywood has called her one of the most beautiful people alive, and I happen to agree. And if you saw her in Maleficent, you know that post-mastectomy and reconstruction, she looks as hot as ever.

Sometimes I start to worry about the physical aftermath of all of this. I mean, it's not like my physical appearance is tied to my career. I think it was pretty gutsy of Angelina to go public with her journey, because she really didn't have to. Mastectomy, the reconstruction process... totally un-hot. The whole topic is probably not so good for public relations when your job is to look amazing. But the opportunity to speak up about BRCA mutations and hereditary cancer totally outweighed any reason for her to keep it quiet. So what if there would be critics? I can say that I certainly learned more about hereditary breast cancer after Angelina Jolie went public with her own journey.

Of course, the majority of my knowledge came after it became personally relevant.  But if my own speaking up here in this blog leads to even one person learning something about the BRCA mutations, than it will be worth it to me.

-----

So I had a bit of a melt down one night last weekend after coming in from the cold. It suddenly occurred to me that the physical response to the cold that to we come to expect from our natural anatomy, well, it just won't happen any more. The 'responsive' parts will go with the rest of it all. That's just kind of creepy.

Reconstruction will take several months. I wonder what it will look like. I wonder if I will want to look? Will I let anyone else see?

I am not a movie star and no one will be plastering my face (or any other part of me) on to the cover of any magazine. I know that the people who love me will continue to do so, even after they are off of my chest. I just wonder if I will be so forgiving and loving to myself. How long until I will love to look at me again?

Why.... (part one)

Why would you mutilate yourself like that? 

Isn't that a bit drastic? 

Where does God fit into this? Just pray and have faith that He has a plan for you.  

These are all things that have actually been said to me this year.

I believe in God, and I also believe in Science. And I believe that God gave the talent to the doctors and scientists to discover this gene mutation. And I believe that God put me in that room with Mom and Dr. Moffet, and that He was with me when I made my clear decision.

This is why:

 My mom and I, just ten years ago. We were regularly asked if we were sisters.

Mom, this past Spring. Her most recent round of chemo exasperated a gastro bleed that almost killed her. Chemotherapy is hard on the body. She is still so very strong, but there is no denying that cancer and chemo have caused permanent (and often painful) damage to her body.

I am thankful that she has fought and won again, but not everyone is so lucky. 1 in 8 women (13%) will get breast cancer.  Women who have the BRCA mutations have up to an 85% chance of getting breast cancer. 

Breast cancer causes the deaths of 40,000 women each year. 

Having a prophylactic (risk-reducing) mastectomy reduces the chance of breast cancer by 90%. 

Cancer is lame.  I will fight.