A New At-Home BRCA1 and BRCA2 Test and My Personal Double Mastecomy Story

I was watching Good Morning America yesterday, and they did a segment on a new at-home test for the BRCA 1 and BRCA 2 mutations, otherwise known as the “cancer genes.” You send a salvia sample to the company, Color, for $149, and in 3-4 weeks, you get the results back. (GMA said it costs $149, but the Color website says $249, which still good if that is the price.)

This hit home for me because I have the BRCA2 mutation, and in October 2015, I decided to have a preventative double mastectomy. For those who don’t know, people with BRCA1 and BRCA2 mutations have higher risks of getting certain cancers. In my case, as a female with the BRCA2, I have a higher risk of getting breast and ovarian cancer.

Lets back up to how I found out. My grandma, who had breast cancer three times, tested positive for the BRCA2 and told my sister and I that we should get tested. I forgot about it for a long time, and while at an annual OBGYN appointment in 2013, I thought of it and mentioned to my doctor that my grandma has the gene mutation. I didn’t think he was going to be so adamant about getting the blood work right then and there, but he was.

Part of the reason I think this new at-home test is great is because insurance isn’t involved and it only costs $149. My OBGYN and I looked up the guidelines on having the test covered, and because my grandma is considered immediate family, it was covered. But it wasn’t that easy. I had to send in proof that my grandma, in fact, has the gene mutation, and after a lot of phone time with the insurance company, I still received a bill for over $4000. Luckily, that was all fixed and I didn’t have to pay that much, but that is how much the blood test costs if you don’t meet the criteria. From what I remember from back in 2013, insurance would cover the test if you yourself have or have had breast cancer, or an immediate family member tested positive for the gene. You wouldn’t believe how many people talked to me about wanting to get tested because they had grandparents, aunts and even parents die from breast cancer and they want to know if they have the mutation, but because those people have passed away and there is no way of knowing if they themselves had it, it wouldn’t be covered by insurance. Like I said, I had this test done several years ago and this was my experience then. If insurance policies about the BRCA genes have changed, I would love to hear it! But if not, this at-home test is such a breakthrough for testing those people whose insurance won’t cover it…or if someone doesn’t have insurance at all!

Okay, back to when I found out. It was around Christmas time of 2013 when my doctor called to tell me that I had the BRCA2 mutation. It was a bit of a shocker, but I was also kind of glad that I could be proactive and get something done about it when I was ready. I met with several doctors, including an oncologist and a gynecological oncologist. The following year, I got pregnant with Aurora, so I was able to speak with several gynecologists in the practice I was seeing to ask their advice about getting the double mastectomy also. I probably asked seven or eight doctors for their medical opinions, and every single doctor said the same thing: If it was me (or my wife), I would (I would tell her to) have the surgery as soon as possible.

We knew Aurora would be our last baby, and I wanted to get the surgery done before I turned 30 because that’s when the risk goes up quite a bit, so I scheduled it for October 27, 2015. It worked out well because my parents were already coming to North Carolina a few days before the scheduled surgery to babysit for a wedding Anthony and I were both in. My mom ended up staying for the week to take care of the girls and I, and then Anthony took the second week off to take care of the girls and I, so it worked out well.

Anthony took me to the surgery and my mother-in-law came to the hospital to wait with him as well. There was a little bit of a complication (nothing life threatening) that made the surgery take longer then expected, so it was about 7 hours long. I had to stay overnight one night and then since I was actually feeling pretty good, we got to leave the next day.

Funny story: I had to be taken outside in a wheel chair by someone who worked there while Anthony went to get the car. Several minutes passed and it seemed like it was taking him waaayyy too long just to drive out of a parking garage. I was calling him and texting him…no answer. The man who wheeled me out looked a bit concerned and told me it normally doesn’t take this long. I jokingly thought, oh man…I get my boobs cut off and he could only make it one day! Haha! No, that wasn’t the case…we are still happily married…phew. He hit a car in the parking garage. Nothing serious, just really bad timing!

There were two hard parts after the surgery.

ONE- Surgical drains. There were two on each side that had to be measured and emptied often. At the beginning, Anthony had to do it and I am so thankful for him, especially for that reason. To shower, I had to wear a lanyard and hang all four drain to it…it was a pain!  They were hard to hide, but luckily it was sweater weather, which made it a bit easier.

The surgery was on October 27, and I actually made it out to a Halloween party with the girls and went trick or treating with them too! Thank goodness for ponchos to hide those drains!

And though it was hard, I was even able to curl my hair!

TWO- Not being able to hold Aurora. Aurora was five months old when I had the surgery so she obviously didn’t understand what was going on. Hailey was four, so she was able to vaguely understand that mommy wasn’t able to do all the things I usually did for those first couple weeks.

I led a pretty normal life during those first couple weeks, except for the drains. I am so so lucky to have had such an easy recovery. I didn’t take any pain pills except for what they gave me in my IV at the hospital. We even got to go on a little weekend beach trip with friends a week and a half after the surgery, and once again, the drains were the worst part. I was even holding Aurora at this point, even though I probably shouldn’t have been before seeing the doctor, but I felt like I could.

Dinner at the beach.

I got all my drains taken out two weeks after the surgery, and let me tell you…that was a GREAT day! I was almost completely back to normal when those things were gone. Hailey actually got her ears pierced right after my doctor appointment so it was a big day of both of us!

Drains out, and earring about to go in! 

For the next three months, I had appointments every couple weeks to fill my expanders in preparation for the reconstruction surgery. During the double mastectomy, they put expanders in that they gradually fill with saline during the months between each surgery, by inserting a needle into the knob of the expander in order to expand the skin. I don’t know if “knob” is the right word, but basically if they hit the expander with the needle, it would deflate and that wouldn’t be good, so there is a “knob” where the needle goes in to fill it up. And yes, they stick it right through the skin.

In January 2016, I had my reconstruction surgery. It was breeze compared to the double mastectomy as one would imagine. I was bummed to find out that I needed surgical drains again though! Just one on each side instead of two this time, and they were gone in a week!

Anthony and I even went out on a lunch day date the day after the reconstruction since my parents were in town to help with the girls. Again, it was the perfect time of year to wear a poncho to hide the drains!

I feel completely normal now, and would not change any of my decisions about getting the double mastectomy at the age of 29. Except maybe trying to coordinate the surgeries into the same calendar year so I didn’t have to pay our deductible twice, but that’s a topic for another day!

I bounced back super fast and was only out-of-commission to my family for a couple weeks total, if that! My thought process going into it was that I would rather be out-of-commission for a couple weeks when my kids are 4 years old and 5 months old, then wait it out with the risk that I would get the cancer and have to miss out on things down the road and for more than just a couple weeks, and in obviously a more serious and scary way.

I am still at a higher risk of getting ovarian cancer, which actually scares me more than the breast cancer. My doctors don’t recommend having my ovaries removed until I am 35-40, so in the next couple years I will be having that done as well. They aren’t as quick to take the ovaries because it will have negative effects on the body, like putting it directly into menopause. I do get blood work and ultrasounds every 6 months to monitor my ovaries until we decide to do the surgery.

The BRCA gene comes directly from a parent, so my biggest concern is for my girls. They won’t test them until they are at least 18 years old, so I am hoping they learn more about it by then. Unfortunately, my sister also tested positive, and she has a daughter as well (men can have the gene too), so there are a lot of future worries!

I don’t think there is one person out there who hasn’t been affected my cancer in one way or another. From having cancer yourself, to knowing a family member, friend or even pet who has had cancer, I feel like it is unfortunately EVERYWHERE! I feel lucky that we now have the technology to find out about cancer risks, and the means to be proactive about it, and I hope and pray that there continues to be breakthroughs and hopefully one day, a cure.

 

 

 

 

 

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