PALB2. 4 letters and 1 number. Such a short acronym. It rolls off the tongue in a second.
But dang at the space it can take up.
Back in November, I finally decided to make an appointment with a gynecologist and take seeing him or her seriously. It had been about 8 years or so since the last exam I had had and friends who knew my family history were relentless in asking me if I had found a doctor yet. It isn’t that I was afraid to go. I just never got around to making an appointment.
Yes, in case you’re wondering I DO know how lazy and irresponsible that is.
So, after weeks of research, asking around and reading reviews, I finally decided on the physician I wanted to see. It was during the first visit in her office, after hearing my family history, that she asked me if I would be interested in having some genetic testing done.
To be honest, this was something I had just never thought about doing. I mean, my mom had had limited testing done several years ago to test for Lynch Syndrome after my Grandmother was diagnosed with it. Since her results were negative and I knew I didn’t have to worry about inheriting that one or passing it along to my children, my mind simply moved on from it. While other cancers had run rampant in our family and devastated so many lives, seeing what genes I may have that could increase my risk just wasn’t on the radar. She explained how important it could be in her ability to treat me the best way possible, so I agreed.
For 4 weeks I didn’t give it another thought. Then, one random day at work, the phone rang.
When someone from your doctor’s office calls and tells you that an appointment has been made for you in the wake of recent testing, you sort of already know what you’re in for. She said that my doctor wanted to speak to me about the results of my genetic testing and that it was important for me to be at their office the appointed time and not reschedule. I asked if she could go ahead and tell me what the test showed and she did, followed by an explanation that she had no idea what it meant. As soon as I was able to thank her and disconnect the call, I did what any normal person does. I turned to Google.
It took about 15 seconds for me to find PALB2 (a protein that rests in the DNA between BRCA1 and BRCA2, the most notable breast cancer genes) and understand exactly what it meant for me. With this specific gene, my chances of breast cancer were increased (comparatively speaking) by 90 percent when chances for women in general were taken into account. For me personally, after my information was put into a specialized algorithm, the chances I will develop breast cancer are 50 percent. FIFTY PERCENT.
If I said that didn’t take my breath away, I would be lying. As I sit here typing this, I can’t help but think of the stories I’ve heard about Russian Roulette. A classic revolver, a six shooter, can hold 6 rounds. If 1 bullet is placed into a chamber, the chamber is spun, closed and the hammer engaged, you have 5 out of 6 chances that the bullet won’t come out. I don’t know about anyone else, but those are not odds I’d take. Allow that to put my 50 percent into perspective for you. Let’s say that revolver is a 2 shooter and 1 bullet is chambered. I have a 1 in 2 chance that bullet won’t hit. If I was a betting woman…well. You know.
It isn’t just the breast cancer that lurks in the shadows with this gene but also pancreatic and ovarian cancer. My chances with those two are no where near as high. With the pancreatic cancer, I’ve been told that since I have no family history, I pretty much don’t even have to worry about it since it only increases my chances by a very small fraction. With the ovarian cancer, because so much of the “female cancers” run in my family, there will be an issue for me though no where near as big as the breast cancer.
In all of my research, I also found that there is a 50/50 chance that this gene will be passed to my children too. 50/50. 1 in 2. I have 1 daughter and 1 son. Here I go with that 2 shooter again. We’ll circle back to this one another time.
15 minutes after my Google search and a short phone call with my mom (who is a surgical first assist and has had the opportunity to work with some of the best surgeons in our area), I have both my breast surgeon and my plastic surgeon lined up because they have confirmed what my research has already shown. I’m about to have a bilateral mastectomy with reconstruction followed by a total hysterectomy.
Wheeeeew. PALB2 is taking up more room by the second and I’m not entirely sure my mind nor my heart can hold much more.
I don’t know how to put into words the emotional rollercoaster this has been so far. It takes your breath away to be told that you have something in your body that at the very least can make you sick and ruin your life, at the most can kill you. I felt like I had the breath knocked out of me and had to quickly adjust to what was becoming a new normal. I knew I did not want to risk that 50 percent. I’ve watched what cancer can do. I’ve personally seen the weight it puts on families and the way it can ravage a body. I don’t want that for my family. I don’t want that for me.
I can tell you that if someone in your life is on this journey, or at some point has to take it, please be kind with your words. I made the mistake of confiding where I shouldn’t have and the words spoken to me during that conversation have not left. “But you don’t have cancer. So it’s not really a big deal.” She was right. I don’t have cancer. Thank God. But if I don’t take care of this, I could. I keep returning to that conversation wondering what was going through her mind at that moment. She had dealt with cancer. It had hit very close to home with her. that was one of the reasons I had called her…she had felt those effects and could be a confidante to maybe understand a little of what I was feeling. So why was I made to feel belittled and dramatic? I found myself thinking about how this next year will be hell for me, my husband and for the friends and family that will be helping with my recovery. But I’m not supposed to be worried, anxious or afraid because it’s no big deal. Well. Screw that.
This is a big deal. It’s a really big deal. It’s a big deal to me, my husband, my children, my parents, my siblings…it’s a big deal to the people who are my rope pullers. They have all banded together and rallied in their prayers in a way that both humbles my heart and makes it want to explode at the same time. Their support and their prayer have helped change my perspective and my own prayers. I see this as a gift now. God’s immeasurable protection and faithfulness just astound me. In His goodness, He has shown me what could harm me and then He gave me the tools to obliterate it.
My prayer is this stops here. It goes no further. I pray this doesn’t reach my children. I pray they never have to deal with nor face what this next year will bring for me. I know what science says but I also know the cross has the final word.
Over this next year, I will be updating periodically. I want to document this experience in the hopes that more are made aware and the road is made a little easier for someone else. If you have had a mastectomy, a reconstruction, a hysterectomy or have faced cancer, I would love to hear your story. Our experiences, sometimes, aren’t just our own and that’s why I want to share mine. My next appointment is this coming Thursday with my plastic surgeon…I’m sure I’ll have more thoughts to spill. Until then, have a good week, Y’all.
Don’t forget to look for His goodness.
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