Sharing my decision to have a prophylactic double mastectomy

Losing my mom unexpectedly opened doors for me that I had no idea existed.

Families love telling stories of funny things kids say when they’re younger and mine was no different.

My mom loved telling people that I asked her, when I was like 3 or 4 years old, to buy me a bra with boobs.

To be fair, I grew up in a family of very large chested women and I couldn’t wait for the day to get boobs of my own.

It’s one of those girlhood rites of passage that even now as a mom myself I’ve encountered with my girls.

Never did I ever fathom that I would be making the decision to remove them.

My family is no stranger to cancer, but breast cancer wasn’t one of them, until it was.

Ironically my father and my maternal grandfather ended up with the same exact cancer diagnosis and passed at the same exact ages years apart.

We chalked up their cancer to the fact that they worked in the same factory, were in the same military unit and just assumed it was somehow all connected.

It wasn’t until just a few years ago that a great aunt was diagnosed with breast cancer, and from what we know, she was the first one.

My mom was the second.

Since my mom passed away quickly after the biopsy, we never had a chance to figure out what kind of breast cancer she actually had.

Shortly after my great aunt passed, my mom told me if she ever got cancer she wouldn’t get treatment.

Looking back now, I wonder if she knew something the weeks and months ahead of her passing and was too scared to find out for sure.

At the time I thought maybe it was because of what she saw my dad and her own father go through with treatments.

My mom told me she chalked her symptoms up to just a nasty winter bug she couldn’t shake and it wasn’t until she was so unbelievably tired that she finally had blood work ran as we thought it might be her thyroid.

After my mom passed, looking through her medical records I also discovered she hadn’t had a mammogram in quite a long time, and she was only 62 when she passed.

Either way, there was only three weeks between her diagnosis and passing that she wouldn’t have made it to her first treatment even if she wanted.

Thankful that my husband Courtney works for the hospital, he was able to get me into the best breast cancer doctor quickly.

To give a little timeline perspective, I turned 40 in August of 2018 and had my first mammogram in October of 2018.

My mom passed in April of 2019 and in May 2019 I met with the breast specialist who ordered genetic testing.

In June 2019 the genetic testing confirmed that I tested positive with the CHEK2 gene mutation.

July 2019 I had my first colonoscopy because unlike the more common breast cancer genes BRCA1 and BRCA2, CHEK2 carries a risk of colorectal, thyroid, prostrate, skin, and breast cancers.

At the time of my genetic test results, the idea of having a double mastectomy seemed very extreme.

I vaguely remember a double mastectomy being brought up in my follow up visit to the genetic testing, but it was not a conversation I was ready to have.

I’m an only child, my father had passed away in 2012, and my mom lived 5 states away, so all of responsibility of the estate fell on my shoulders as well as trying to maintain some sort of normalcy for my own family.

Instead I opted for a regiment of rotating a breast MRI and mammogram every 6 months.

I needed time to process so much information thrown at me in such a small amount of time and the thought of having a major surgery didn’t feel right.

Every 6 months, I hold my breath.

For the last three years I’ve followed the breast MRI and mammogram rotation and every time I go in, I hold my breath praying for the all clear.

My most recent mammogram they found something concerning, turned out to be nothing, but it was the last straw for me to decide enough is enough.

I scheduled a time to talk to the doctor first and then I brought Courtney in to ask his questions, being a medical provider himself he had his own concerns, I made the decision to schedule the prophylactic double mastectomy.

My risk of getting breast cancer because of the CHEK2 is 30%, which is much higher than a normal woman.

Having the double mastectomy will reduce my risk for breast cancer to below 5%, which is pretty good considering.

What does a prophylactic double mastectomy entail for me.

**Warning if you have a queasy stomach.**

Mastectomy’s, like any medical procedure, have evolved over the years and for each person can be different.

Since I don’t have active disease, I have a bit more flexibility.

The first part of the surgery the breast surgeon will essentially remove all the tissue inside of the breasts and I am opting to do nipple sparing, meaning they are going to try to leave my nipples.

Once the tissue has been removed, they’ll do testing to check for a number of things including blood flow.

After all the testing has been completed, the plastic surgeon will step in to do the first part of reconstruction.

If all goes well, I’ll only have one more reconstruction procedure later this fall.

The surgery is said to take quite a few hours and require and overnight stay in the hospital.

Recovery will take a few weeks and my mobility with my arms will be impacted as well as my ability to do heavy lifting etc.

Needless to say, major DIY projects will be put on hold until I get medical release.

Thoughts for now

My surgery is scheduled for 5/31/2022 and in the meantime I still have one more breast MRI and a number of appointments to get ready for the actual procedure.

Thankfully my girls are old enough to help out and Kennedy has her permit so we won’t be stuck at home since I’m literally having surgery the first week of summer break.

I’m also EXTREMELY thankful that Courtney is a Physician Assistant and will be off with me the first week too to take care of me and monitor my recovery. (I’m pretty sure the doctor is happy about that too.)

Not to mention the fact that the hospital where I’m having the procedure I’ll be surrounded with a lot of familiar faces.

Surprisingly I’m pretty at peace with this decision and truly ready to get the show on the road.

I do plan on sharing my journey from the procedure itself, the things that helped with my recovery, and other words of advice should anyone else find themselves in this situation.

I’ve already had a lot of people reach out who I never even knew had experienced this, and share their words of advice.

Like I said earlier, this gene mutation is not as common as the BRCA1 or the BRCA2 and other gene mutations have been discovered to have links to breast and other types of cancer.

I highly recommend having this discussion with your medical provider, even if you have already had genetic testing years ago, to determine what is right for you.

I would much rather be proactive about cancer prevention instead of reactive and in my mom’s case, I want to have a fighting chance.