I’ve tried to write this post for weeks now, months even, but every time I sat down to do it, I would struggle with what to say. If you follow me on Instagram, then you know I recently shared that I’m BRCA1+ and made the decision to move forward with a prophylactic double mastectomy – or if you really want a mouth full, a prophylactic nipple sparing bilateral mastectomy with tissue expanders and reconstruction. Phew. lol.
For those who are unfamiliar, BRCA 1 (BR-Breast, CA-Cancer) is a gene that everyone has. You inherit one from your mom and one from your dad. If one of your parents has a BRCA1 (or BRCA2) gene mutation, then you have a 50% chance of inheriting that mutation too.
The BRCA gene belongs to a class of genes known as tumor suppressor genes. It normally acts to restrain the growth of dangerous cells in the breast, but when one or both are mutated, it predisposes someone to breast cancer and also gives them a higher risk for other cancers (ovarian, melanoma). For reference, the average person has a 12% risk of getting breast cancer in their lifetime. Someone with the BRCA1 mutation has up to an 80% chance of breast cancer and a 30% chance of getting it twice. I have been told different % constantly but up to 80% was the most common.
Growing up, my mom was diagnosed with breast cancer in her mid 30’s and then again in her early 40’s. Her mom, my grandmother, was also diagnosed with breast and ovarian cancer in her 50’s. It’s been prevalent in my family for decades and seems to strike earlier with each generation.
When my mom was going through her second round of cancer in the early 2000’s, BRCA testing was still a relatively new thing. When she found out she was BRCA1+, the extensive family history finally made sense. Knowing that I could have inherited that same mutation, she insisted I get tested too. So when I was 21, I did the blood work and the results came back positive.
At 21, the last thing on my mind was breast cancer. I was thinking about finding a job, going to parties, hanging out with friends – I wasn’t ready to accept that I had this mutation inside of me. It wasn’t something that I could see or feel, it was just a number- an 80% chance of something possibly happening just meant a 20% chance of something not.
At the time, I just didn’t want deal with what that 80% meant. I was scared to address it, so I tucked the papers away, literally threw them in the middle console of my Jeep Cherokee, and adapted the out of sight, out of mind mentality. Ah, to be 21 again.
A few years later in my mid 20’s, my mom convinced me to start with high surveillance screening which meant that each year I would do a mammogram, breast MRI and ovarian ultrasound. I was reluctant at first – how can it be out of sight and out of mind when I had to deal with it every year? But I was told that the initial goal in high surveillance screening was just to create a baseline for your imagining. That baseline would make it easier to spot changes and to address those changes as quickly and early as possible.
So I agreed and started high survallience testing a few months later. Those three tests quickly became part of my yearly routine and as I got older they started to give me peace of mind that I didn’t realize I needed.
At first, those tests were easy. I was in and out and got an “all clear” from the doctors and was good to go. As as the years went on, little spots started showing up on my imagining – one here, one there. They were all biopsied and came back as benign, but those days of waiting and the fear of what could be growing inside of me started to take it’s toll.
When I hit 30, my mindset really started to change. Suddenly I was engaged, I was making strides in my career, my fiancé Ben and I started to talk about our wedding, our future family, about buying a house. We starting daydreaming about what life would look like and even though it was all within our reach, I could never shake this feeling – this pit in my stomach – that told me that gene mutation could keep me from experiencing all of those wonderful things. My mom was diagnosed with breast cancer when she was 36. She had a great job, a 5 year old daughter and just like that- her life was turned upside down. Being only years away from that same age, I started to wonder if I needed to do more.
My inner monologue was constantly going – was high surveillance screening still the best option for me? Should I look into other preventative measures? How much time do I have before I need to make a decision about next steps?
I suddenly felt like I was in this grey zone – I was skating a thin line between my current healthy status and the age where everything changed for my mom. Was I playing with fire? If I waited another 6 months, a year, two years to research my options, would that be 6 months, a year or two years too long?
Even though I had an 80% chance of getting cancer, I still had a 20% chance of it not effecting me. I felt like I was 21 again, banking on being in that lucky 20%. Did I want to bet my life on those odds?
After talking to Ben and friends and family, I decided earlier this year to get some more information and educate myself on the available options. “It’s just information” I kept telling myself. “You don’t have to actually change anything.”
One option that I always knew about was a prophylactic double mastectomy – meaning they go in and remove your breast tissue before cancer has a chance to appear. While this may seem like a drastic measure, more and more BRCA1+ and BRAC2+ women are starting to opt for this procedure because it drops their chances of breast cancer to 1%-5%, taking them from one extreme to the other.
So I made an appointment with two doctors in Austin that came highly recommended – one that specialized in the breast tissue removal and one that specialized in reconstruction. They work together so it was important to me that I liked and trusted both and knew that they had a good relationship with one another. I learned a lot during those two appointments with the main takeaways being the following for my potential surgery.
Note: Every single person is different – these are just the options that were discussed for me!
Breast Surgeon:
- During the surgery the breast surgeon will create two long incisions under your breasts. They’ll go in and scoop the tissue out (bleh – it makes me cringe every time I think about “scooping” tissue!) and preserve the surrounding skin and nipples in the process. Then the reconstructive surgeon will come in and insert tissues expanders. Think of tissue expanders like deflated implants. They put them in after removal and inflate them over the next few months with saline while your body heals. Once you hit the size you want, they’ll exchange them for the real implants.
- Drains are put in once the surgery is complete to remove excess fluid that can accumulate in the breast area. These will be in for anywhere from 5 days to three weeks depending on the healing process.
- After the surgery you’ll spend 1-2 nights in the hospital (on average but maybe more if needed).
- The recovery period after surgery is the toughest- you can’t lift your arms, the drains are pretty uncomfortable, and you really have to rely on others for a few weeks to cook, clean, drive, etc. Plus, you’re just emotionally and physically drained.
Reconstructive Surgeon:
From the reconstructive surgeon, I learned a lot about the other side of things! The main takeaway was that there are multiple types of reconstruction options with the main three being:
- Prophylactic Double Mastectomy with No Reconstruction: This means you’re removing the tissue and then rocking a flat chest!
- Prophylactic Double Mastectomy with DIEP Reconstruction: This means the doctor will use skin and fatty tissue from the lower abdomen to reconstruct a breast. There’s other versions of this when they can use skin/fatty tissue from other areas as well. Crazy, right? I still can’t believe they can do this!
- Prophylactic Double Mastectomy with Implants: This means that you’ll go with a standard implant. You can do what’s called “direct to implant” meaning they put the implants in during the initial mastectomy surgery OR you can have tissue expanders inserted instead. The tissue expanders help stretch the skin over the course of a few weeks or months to make room for the final implant. Then you’ll have an exchange surgery down the line where the tissue expanders come out and the implants go in (this is what was recommended for me).
What I just told you was the SparkNotes version and, man, was that still a lot of information!
At first I felt totally overwhelmed and overloaded. I was just going in to get some basic info and came out with a full plan of attack. And as I got into my car to head home I had no idea what I was going to do.
But somehow during that brief 20 minute car ride home, I went from “I don’t know what to do – I don’t think I’m ready to do this” to “I need to do this right now – what am I waiting for?” It was a complete 180. For someone who can barley decide what to eat for dinner, I couldn’t believe that I had not only changed my mind, but made such a big decision in the span of 20 minutes or, as I like to measure it, 1/3 of the Hamilton Soundtrack.
When I got home, I told Ben about my appointments and my feelings about the surgery and just overall rational about why I felt like it was the right move and why I thought I should do it now. He’s been a supporter of the mastectomy route from the beginning – since I first mentioned it was an option, and so I knew he’d be happy that I finally met with doctors and got the information I needed to make an informed decision.
When I broke it down, I realized that with my strong family history and the gene mutation, I felt like it wasn’t a matter of if, but a matter of when, cancer would show it’s ugly face in my life. I had the unique opportunity to know the exact odds ahead of time and actually change them. How many people get such an opportunity when it comes to controlling their health?
With Covid in the picture and the world slowing down, a ton of extra PTO at work, no travel plans for the foreseeable future, etc. it almost felt like there was a “right time” to do it, which was crazy for something that doesn’t normally have a “right time.” I thought if I did it before the holidays, I could spend almost 6 full weeks recovering and adjusting without really missing anything in my personal or professional life.
I spewed all of these reasons out as to why I should do this now and I continued to do it for another week, just trying to talk and re-talk my way into making an official decision. Ben patiently listened, weighed in when I needed a lift and ultimately we decided together that this was the right thing to do and booked the surgery.
The true weight of this decision hit me shortly after the date was in the books and has continued to hit me in waves ever since. How will I feel once this is done? Will it be relief? Sadness? Will any part of me think it was a mistake? How will I feel about my new body? Will I still feel like myself? Will I still feel attractive? Will I be able to handle this physically? More importantly, emotionally? There are just so many questions constantly racing through my mind that don’t and won’t have a black or white answer.
But time has kept moving and now here we are, a week out from the date and I’m just as nervous as ever. I’m just ready to get it done, to have the surgery behind me and to move forward knowing that breast cancer won’t be the reason I don’t get to enjoy all of those beautiful life plans I’ve been making.
More to come…