Mastectomy & BRCA

My BRCA Journey // Part 1

For as long as I can remember I’ve joked about the fact that I’ll probably get breast cancer some day. I have quite the family history of it. My grandmother on my mom’s side, grandmother on my dad’s side, aunt on my dad’s side. It was kind of daunting if I sat and thought about it. But it’s not something I fixated on for too long. I figured there was nothing I could do about it except be mindful with early screenings.

And then one day I learned about something called BRCA gene mutation.You may have heard about it. Angelina Jolie brought a lot of light to it when she found out she had it and decided to get a prophylactic (or preventive) double mastectomy. A while after that news became public and I saw more about it in in news articles throughout the years I began to wonder about my chances of having that same heredity gene. I brought it up to my OBGYN and we talked pros and cons of finding out, but I put off testing for it. My sister decided to get tested, and it came back negative. That pulled a big weight off of my shoulders, because I just assumed if she was negative I probably was too. I decided I wouldn’t bother shelling out the cash to test myself. But then a year and a half ago my cousin Nancy tested positive for it. And there was the nagging in the back of my mind again. But I was pregnant with Gibson so I put off thinking about it some more. I started seeing a new OBGYN after Gibson was born, and at my first appointment with her she mentioned getting tested because of my history, including my cousin’s positive test. A month or two later I had an appointment for a yearly exam and blood work with my primary care doctor, and we decided to order the test along with the other general tests we were already ordering. Insurance coverage for it ended up being super expensive, but my sister had told me about an online resource called Color Genomics. I looked into it and the cost was only $100, so I ordered my kit. There was a small amount of fear and anxiety as I spit into the little vial they sent me and mailed my DNA off to their lab. Now I just had to wait 4 weeks. But my sister’s test was negative, right? So I just assumed mine would be too.

Then on the night of February 5th I got an email that my results were ready. I had to schedule a call with a genetic counselor in order to receive and review them. I didn’t know if this was standard for all results, or if this meant I was positive. I was feeling shaky and a little nauseous as I got closer to my call time the next day. I hadn’t told anyone except for Jonathan that my results were in. I just didn’t know what they would be and how I would feel. The genetic counselor was so kind on the phone and instructed me how to pull everything up on my computer. And then she released my results and said the words I was dreading. “You tested positive for the BRCA2 gene mutation.” Jonathan was next to me (thank God), and I just looked over at him and nodded. Then she went on to explain what all of that meant, what the statistics were, what the options were for moving forward, etc. etc. It was so much information (good information, but a lot), and at some point I remember thinking “I need you to quit talking so I can hang up the phone and cry.” The words “this means you have a 75% chance of getting breast cancer” are still ringing loudly in my ears.

In case you’re reading this and have never heard of this whole BRCA thing, there are two different gene mutations that put you at a higher risk of both breast cancer and ovarian cancer. The risk is slightly lower with BRCA2 than with BRCA1 (for women), but it’s still kind of staggering. My mutation is BRCA2 which puts me somewhere around the 75% risk of getting breast cancer, around a 15% chance of getting ovarian cancer, as well as an increased risk for pancreatic cancer and melanoma. Awesome. I know some people don’t agree with genetic testing. Why stress yourself out with knowing? And in some instances I agree - for diseases that have no prevention and no cure. But breast (and ovarian) cancer is different. I can do my damn best to prevent it, and it’s treatable, especially if it’s caught early. So even though it’s been a lot to process, I’m so glad I found out.

The day I found out was filled mostly with information. Reading all the statistics, sharing the news with my family and my best friends, sending my results to my doctors, scheduling appointments with them, and just taking it all in. I cried for maybe a minute after that phone call and then I was really feeling ok. A little shocked and overwhelmed, but not devastated. But by the end of the day I could feel the emotions coming back up. As I got in the shower that night I remember looking down at my chest and starting to cry again.

The next morning, when I was by myself for the first time, is when it all started to hit me. I spent a lot of that day in tears. It’s hard to process the whole thing. It’s not like I had found out I actually had breast cancer. But there’s a 75% chance I will get it. That’s a lot. Would I just have to spend year after year hoping to catch the cancer early enough to treat it? I was also reading all kinds of information about preventive surgeries. Did I want to get a double mastectomy? And then reconstructive surgery? I mean, it’s always been nice to think about having “better” boobs. But I really am fine with what I have, so it’s never a decision I would have made otherwise. What kind of reconstruction would I do? What’s the insurance coverage like? I may have to remove my nipples too, do I want to keep those? Why TF am I even having to think about this?!? And what about getting my ovaries and fallopian tubes taken out? I’m not really using them anymore since we are done having kids, but again, being in a place where I have to make decisions like this just didn’t (doesn’t) feel fair. These parts of my body that make me a woman may very well try to kill me. It’s a tough pill to swallow. I fluctuate between fear of the unknown, fear of possible surgeries, anxiety with being in this weird state of in between, fear of passing this on to my boys (there’s a 50% chance each of them will have the same mutation), and sadness and anger that I’m having to deal with any of this in the first place. I’ve done so much work to live a healthy life, being conscious of the types of foods I eat and the products I use. But there’s this thing written into my DNA that may just give me cancer anyway. It can all feel totally maddening if I let it.

My God, what would I do in this situation if it weren’t for Jesus and the hope I have in Him? God isn’t surprised by any of this news. He knows I have this stupid mutation. He’s always known. He’s prepared the way for me. He gave us Gibson when we weren’t even sure we wanted more kids. He gave me a smooth pregnancy, the most ideal delivery, and a year of nursing, which is the whole point of boobs anyway, right? And we knew for sure we were done having kids before I took this test, which takes so much of the pressure off as I face some possible tough decisions in the near future. He’s going to do great things through this part of my life. He’s already doing it. He works all things together for good, even mutated things! I have hope that He is the author of my life and He already knows all the parts of my story. Am I still sad and scared? Yes, sometimes. But I have hope, and that makes all the difference.

I am planning to keep you in the loop throughout this whole journey, whichever way it goes and whatever decisions I make. I spent a lot of time googling “BRCA blog posts” in the days after I found out just to try and find stories like mine, to find real women, especially mamas of young kids like me, that have gone through this thing. I wanted to see how they were dealing with it and what decisions they made. And now more than ever I am really thankful for this platform I’ve been able to have, however small it is, to share my journey so I can hopefully encourage the next woman who gets this diagnosis. I am open to any questions you might have, so feel free to leave them in the comments or email me at coldcoffeehotmess@gmail.com.

Read part 2 here.

Hereditary breast cancers account for only 5-10% of all breast cancers. BRCA 1 & 2 mutations are rare in the general public, so unless you have a family history of breast or ovarian cancers, there shouldn't be a need for you to be tested, but you should discuss your family history with your doctor if you have any concerns. You can read more about BRCA gene mutation here.

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