my BRCA1/mastectomy story.

 

Today I am going to talk about something that I often don’t address here, but given that it’s October and Breast Cancer awareness month, I feel a pull to share this part of my story.  

My mom was diagnosed with Breast Cancer at age 37 (when I was 12), and given the fact that two of her sisters had also had it, I grew up from that point on thinking that facing breast cancer myself sometime in my life was not a case of “if,” but “when.” (Anxiety much?  Yes, it’s been a struggle my entire life, and I think one big source was the fear of breast cancer!)  The anxiety caused by this and some other factors became a hallmark of my life as a kid, teen, and young adult.  I had to have twice as much screening as someone with no known risk, and by the time I was in my mid-thirties, I had mammograms, ultrasounds, and breast MRIs regularly. 

Once Ryan and I knew we were done having kids, and after I had recovered from my hip surgeries in 2013/2014 (more on that saga some other time), I knew it was time for genetic testing. First my mom was tested.  They found the BRCA1 gene mutation in her, and thus they knew what to look for in me. On a sunny morning in June 2015, while sitting at my daughter’s swim lesson by the pool, I got the call. They had indeed found the same gene mutation in me that was in my mom. I was BRCA1 positive.

I poured my heart out to my poor friend who happened to be sitting next to me at that moment – I am sure she wished she had chosen a different seat that morning – and went home and spent a good deal of time processing what this meant for my life: 55-65% chance of developing breast cancer by age 70; given the fact that my mom and aunts all had it in their 30s, it felt like I would get it much earlier than some people.  Also, this meant a 35-70% chance that I could develop ovarian cancer by age 70, and after watching two of my dear friends lose their mothers to ovarian cancer, I also chose to have my ovaries removed (more on that later!) later that year.  I also have a higher chance of developing melanoma, pancreatic cancer, and some other cancers.  I choose to no longer let fear of these cancers run/ruin my life, but it was hard to swallow these facts early on!

Having a preventative mastectomy and reconstruction was a no-brainer for me. I scheduled it pretty quickly, and in November of 2015, I said goodbye to my (previously tiny) boobs.

 

 

I chose to have my mastectomy and reconstruction done “all in one,” a cutting-edge new method that removed the need  for expanders, and the need to slowly fill the implants week by week until the breasts are the desired size/shape. I awoke from surgery with a chest twice the size that I had expected. Some of that was swelling, but it turned out that the shape of my chest wall, which pushed my breasts out to the sides, caused my surgeon to make a call to use bigger implants than planned, leaving me with “perma-side-boob.”  This caused me to have to buy nearly all new tops, a huge disappointment to clotheshorse me.  I love fashion, and giving away a lot of my most beloved tops was a huge bummer for me.  I still sometimes get frustrated at how much my breasts “pop out” on the sides.  It gives me an appearance of being bigger than I am.  I have decided to embrace this look, though, and don’t try to hide it as much as I used to.  I am grateful to be here, grateful to look the way I look, and so what if someone thinks I have fake boobs?  I do, but not for the reason they probably think I do.  If they want to get to know me and talk about it, I am happy to share my story.  

 

Recovery was hard.  I didn’t realize how hard it would be to not raise my arms past my waist with three kids at home for several weeks.  Thank goodness for my mom and Ryan’s mom, who came and took care of the kids (and me!) so I could heal up and Ryan could go to work. The drains were gross, and I had to have them in a couple of weeks longer than originally predicted.  It was so humbling to ask my mom, mother-in-law, and Ryan to empty them and measure the output. Eventually I healed and was able to do Physical Therapy to work on slowly raising my arms up over my head, and various other motions again.  

These days, I hardly think about how I’ve had a mastectomy (except when I attempt to shave my armpits – any other mastectomy gals out there find that you can almost never get rid of all of the hair?  It’s tricky getting the razor all the way in there for me!).  It feels like a story from my past that shaped me in a big way (literally and figuratively – haha), but I would do it again in a heartbeat. The peace of mind that came along with it is well worth having to get all new tops because my chest turned out bigger than I expected, dealing with the surgery and recovery and the fear of what I’d look and feel like after.  Oh, and on that note, yes, my breasts were numb for a long time after, but I have a good deal of feeling there now!

I was told that I probably shouldn’t ever try to do push-ups and pull-ups again, as that would be too taxing on the new structure, but I now find myself (after a lot of time and S L O W buildup of strength) doing them almost every workout in some way; in fact, I did 40 pull-ups – some jumping – as a part of my workout this morning!  Building the strength back up to do these has been a long road, but totally worth it!

 

I’m proud of myself for overcoming. Yes, there was a lot of suffering on this road, but a whole lot more overcoming. I’m grateful for my friends, family and Ryan who stood by me, literally hand-fed me (see hilarious photo of me right after surgery being fed by my friend Kristin above), emptied out my drains (🤢), and loved me through a hard time. I couldn’t have done it without them. Ryan especially was my biggest cheerleader, helping me find the light on dark days. I also know how lucky I was that no cancer was found, and I acknowledge all the warriors who have to endure this surgery in the midst of a cancer fight.

Where are my other previvors ?  I send you all so much love. Also, to the rest of you, check your ta-tas! 

If you read this far, you’re a saint.  I share because I think it’s good to reflect with gratitude, while I look forward with hope. And, Enneagram nerd side note: it’s funny to look back and see my 8ness so clearly in this story. I was so determined, so tough. I refused to let this stop me, and I think the 8 grit along with the 7 and 9 wing joy/positive attitude made me get through it with such “can-do” spirit. Thanks for reading, and for all your love and support!

For more information on the BRCA1/2 gene mutations, click here.