I’ve wanted a boob job…er, “Breast Augmentation”….for a long time now.

It’s like, I started with zero boobs, had children, and then got negative boobs. 

My husband has never been on board with the idea of it.

He (sweetly, I suppose) insists, “I like you just fine the way you are!”

And honestly, I’ve never been entirely certain it’s something I’d want to go through with.  I basically just wanted to magically have larger breasts…really, just breasts.  Just breasts, ya’ll.  Didn’t even have to be large…without having to think through it, pay for it, get on the same page with my husband over it, or decide how I feel about it.  

I remember saying, and I quote, “Well, maybe one day I’ll find out I have the BRCA gene, and then I’d basically HAVE to get a boob job, AND insurance would pay for it.”.

I was mostly kidding, but lord have mercy, SHAMEFULLY, was not ENTIRELY kidding.  

That’s pretty embarrassing if I let myself think about it for too long, so I won’t.

Here’s the ironic part, though.  As fate would have it, I DO have the BRCA gene.  BRCA1, that is.  The Breast Cancer gene.  Also the Ovarian Cancer gene.  

In May of 2017, my mom was diagnosed with Ovarian Cancer. Ovarian is a pretty rare cancer, affecting only 1 out of every 75 women and 25% of the time is genetic. At her doctor’s suggestion, my mom underwent genetic testing to determine if she was a carrier of a cancer-causing gene mutation. Her doctor informed us that if she indeed had a mutation, it would be important for each of her children to be tested as well since my sister, brother and I would each have a 50% chance of being a carrier.  

Initially, I wasn’t that concerned about any of it.  I remember telling my sister, who was a bit worried, “It’s fine. Worst case, we just lop off our boobs.” (I’m sorry, was I 17 years old last year? Just checking, because my thought processes seemed to have been aligned with that of a high school girl).  

My mom was tested for over 60 different genetic mutations, and all of her genes were ship-shape except for one…the gene that helps to inhibit tumor production in the breasts and ovaries. Yup. BRCA1 positive.

So I had my blood drawn, waited 3 weeks, and then got the call. I knew when the doctor started the conversation with, “Do you have a few minutes to talk?” it meant I too was a carrier.  

So is it a blessing or a curse knowing that you are BRCA1 positive?

After finding out that I am, I’m still trying to figure out the answer to that.  

I mean, it’s cool that Angelina Jolie and I have something in common, I suppose, so there’s that.  

It’s also a blessing that I know my risk and can choose to take preventative measures. I’m positive that my mom, as well as many, many other women wish that they had been armed with that same information.  

It’s kind of a curse too, though. 

It’s actually not as simple as just ”lopping off my boobs”. (Although look, if I’m being 100% honest with you, the thought of saying “peace out” to those itty bitty things doesn’t totally send me into despair.  “Hello B cup! I’ve been dying to meet you my entire life.”)

There are a whole lot of choices to be made.  

On the breast side of things, I can opt to:

– alternate mammograms and MRIs every six months (a bit pricey, lots of radiation, and then the emotional toll of “just waiting to find something” twice a year, every year

– Double mastectomy with reconstruction (this is a big surgery, and I have three small children at home. Certain sensations are lost, permanently. Expanders have to be worn, and I’m only just learning about those, but they seem kind of miserable)

– Medicine. There is a medicine called Tamoxifen known to reduce the risk of breast cancer, but it also puts you into menopause. (Yeah, no thanks.)

On the ovary side of things:

This is even more stressful because unlike with breast cancer, where screening is actually incredibly effective at catching cancer early, there are currently NO good screening methods for ovarian cancer.  The few that are available are basically half-ass.  And nothing instills peace and confidence in the heart of a High-Risk Cancer Person’s heart than a half-ass screening method.  “Alright ma’am. Your ultrasound looked good. You probably don’t have cancer. But you might. Yes, you definitely might.  This test sucks, and only shows cancer some of the time. Have a great day!”

So the party-line amongst Ovary Specialists seems to be: “get rid of ‘em. Like, yesterday”.

Yup, get rid of them. Just go on ahead into menopause at 36. It will be fine! Hot flashes and irritability and fatigue will be great for your ability to mother well. Lack of sex drive and increase in weight gain?Ain’t no thang. Also, early menopause increases your risk for osteoporosis. Oh, and heart disease. Tut tut. Pat pat. No biggie.

Ugh. And crap. And well, just  s**t.   

I’m pretty early into all of this, and not yet able to dispense a whole lot of advice or encouragement, but I do have SOME to offer, for any of you who may be new to the BRCA Sisterhood.  

1) Don’t despair TOO much. At the end of the day, knowledge is power, right? At least we are in a position to HAVE choices

2) Don’t panic. I’ve been seeing a counselor for some time now, and when I mentioned to him how overwhelmed I felt by some of the decisions that needed to be made, his advice was “good decisions always come out of a place of calm. Don’t let fear force you into a rushed decision.” I get it…once you find out about your pesky mutated gene, there is a sense of feeling like your ovaries and boobs are nothing but ticking time bombs. That’s not entirely true though, and especially into depending upon your age, and a few other factors. I actually found out that my risk for the next five years anyway, is not significantly higher than the general population’s risk of ovarian and breast cancer.  It’s not something to take lightly, but you DO have time to gather research, ask questions, process, and make an informed decision that feels right for you.  

3) Join a group. I almost instantly joined two Facebook groups…BRCA Sisterhood, and BRCA1 or BRCA2 Genetic Ovarian and Breast Cancer Gene. Both groups are great places to ask questions, learn about other people’s experiences, and just gain a sense of support from women who understand what you are going through.  

4) Practice caution when it comes to HOW involved you become with that group. My advice? Join the groups, but adjust your Facebook settings to where you don’t see every post that’s ever written. There is more to your life than BRCA. When you are constantly flooded with various people’s BRCA/cancer/horror story post, it can become a bit too consuming. I’ve also found that generally speaking, the most active participants in those groups…or any type of Facebook group, really, are the ones who, themselves, are the most worried/flustered/looking for reassurance.  The ones who have peacefully and confidentially gotten on with their lives don’t have as much time to hover all day in a Facebook support group…they’re busy getting on with their lives.  

5) Facingourrisk.org is a great website to visit.  You will find a wealth of information there, and can also request to be matched with a BRCA mentor….someone else who has the BRCA gene, but is a little farther along in their journey.

6) Check out the WISP clinical trial at MD Anderson.  There is quite a bit of research (unproven at this point) pointing to the possibility that Ovarian Cancer may actually originate in the Fallopian tubes, not the ovaries themselves.  Based on this, some women who are not ready to enter into surgical menopause, but who ARE done having children, are opting to have their Fallopian tubes removed for the time being, to (possibly) decrease their risk of ovarian cancer, without having to part with their ovaries.  

For those of you newer to the BRCA Sisterhood than me…..I hope some of this was helpful to you.

For those further along….please comment below with your advice/wisdom/stories or input!

 

 

 

Hayley Hengst
Hello AM readers! I'm Hayley. Stay-at-home mom to three boys/angels/tyrants (primarily tyrants). Most days, I am very content in that role. Other days, well, you know how it goes. I absolutely love writing for Austin Moms Blog. I also love: books, bubble baths, Mexican food, porch swings, and traveling. I hate: the hustle and bustle of trying to get out the door, on time, with all three of my kids. Seriously, I just kind of give up. You can read more about my crazy crew at www.motherfreaking.com!

2 COMMENTS

  1. Thanks for sharing your story Hayley! I found out I have an ATM gene mutation, which increases my risk of breast and pancreatic cancer, nearly a month ago, and am waiting to confirm my bilateral mastectomy date with my surgeon any minute now. Similar to you, ovarian (and breast) cancer make up my “family history” profile.

    While finding out about my mutation wasn’t a complete surprise (I have two maternal cousins who also have the gene), it didn’t make the decision making process much easier when it came to choosing between screenings every 6 months or undergoing a pretty major surgery and reconstruction process. I’m not much further along in my journey than you are but what I would contribute to this conversation is a quote that brought peace to me in my final days of making my decision and managing the emotions that go along with it: Give me the wisdom to know what must be done and the courage to do it.

    Best of luck to you in your journey, wherever it takes you!

  2. One of my close friends, also a mom of three youngins AND a field hockey coach at the high school that never seems to sit down EVER discovered she had the gene and did the double mastectomy and the breast augmentation, along with the hysterectomy. I know everyone’s experience is different, but she has bounced back remarkably, and you wouldn’t even know she had it done now! Praying for you as you make these challenging decisions. I absolutely love reading your blog!!

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