Well, it’s clear that I suck at this blogging thing. I mean, it’s been what, 9 months since my last post? I warned you at the beginning that I would probably be terrible at keeping up with this, and well, I am. I’d say I’m sorry, but well, those of you that know me know that I don’t really care… And I’ve been contemplating for a week or so if I was going to post this and have decided that I think the benefit it could give others far outweighs anything else that could come from it. I should warn you that if you’re looking for a recipe, this post isn’t going to have one, in fact, it’s definitely not going to be one of my normal posts, so if you’re recipe hunting, just go ahead and stop now. 🙂
This post is going to be about science and medicine and genes and cancer and surgery and tough decisions and lots of stuff that no one really enjoys reading about, but after much contemplation, I’ve decided it should probably be shared. (I mean, it was going to have to be at some point anyway.) And those of you that know me well, know that while I may be pretty well known for my sarcasm and humor on facebook/twitter, but when it comes to my truly personal life, I tend to keep it to myself. Health, relationships, you know, the truly important things are not for sharing with the social media world, and if I didn’t think this post might possibly encourage someone to look at their family history and make the tough decisions I’m making, I wouldn’t be sharing it either. So here we go…
A couple of years ago, I went in for my annual girl doctor visit, (You girls know what I’m talking about (and you boys thank God that you don’t know what I’m talking about.).) and she mentioned that I might want to consider having a genetic test done for the BRCA1 and BRCA2 Breast and Ovarian Cancer gene mutation because of my family history. That it certainly wasn’t necessary, but she felt like she should mention it because of the history of breast and ovarian cancer on one side of my family. Me, being the Biomedical Science major I was (and earned a degree in so I guess still am?), of course, started doing some research… I mean the Human Genome had just been mapped for the first time, this genetic testing stuff was all pretty new, and my family history really wasn’t that bad from what we knew (1 aunt with breast cancer and a grandmother that died of ovarian cancer). Regardless, I started doing the research and seeing what it would require from insurance, what kind of testing was done, what it would mean, etc….
Fast forward to this summer, after 2+ years of research and talking with family, close friends, and the insurance company, I decided that knowing was better. For those of you that don’t know, the BRCA1 and BRCA2 mutations, if present, greatly increase your odds of getting early onset breast and ovarian cancer. And when I say greatly increase, I mean somewhere in the 86% range for breast cancer and somewhere in the 52% range for ovarian cancer. As a girl in her late 20s, those numbers were pretty disturbing and scary and downright, well, just terrifying. I decided that knowing what was coming and being able to fight it was definitely better than going to the doctor at 30 and discovering I had breast or ovarian cancer. So anyway, back to 2 months ago… I called and spoke with my doctors in Auburn and got referred to the UAB Genetics Counseling Center and scheduled an appt. The process was simple. I’d meet with a genetic counselor, go over my risks and the chances of me having the mutation/deletion, and they’d take some blood and test it if I felt like that was what I wanted to do. I met with an awesome genetic counselor for over an hour, drew out my family tree (felt like I was back in genetics lab, Dr. Wooten would have been so proud), and decided that even though my chances were slim (somewhere in the 7-22% chance of me being positive for the mutation), that I wanted to do it. I wanted to know. I mean, and with odds like that, why not? I had nothing to worry about. Them taking this blood was going to give me peace of mind that breast or ovarian cancer was not in my future… Right?
Wrong. A week later, I was driving down the road when a Birmingham number popped up on my car screen. Thinking it might be a customer or work related since it was mid afternoon, I, of course answered. It was Katie, my genetic counselor with my results. Somewhere in the back of my mind, I thought “Oh, she’s calling to tell me I’m all clear. They don’t call people with bad news. They’d make you come in for that…” Wrong again. Over the course of the next 15 or so minutes she told me that my test had shown that I have the BRCA2 deletion. I honestly don’t remember much of what she said except that she’d be sending me a letter with everything I needed to know in it and that some specialists from the Kirklin Clinic would be in touch to schedule appointments. I also remember sardonically thinking in the back of my mind, “Ha! Robbie owes me a trip to New Orleans” and “Oh crap! Not my boobs and you want to do what with my ovaries?! I haven’t even considered children yet!”. Needless to say, the rest of the day is kind of a fog, and I have some amazing friends that got me through it.
At this point, I’m sure some of your are pretty confused. I mean, what does a genetic test that’s positive for a deletion mean? It basically means that somewhere in my genetic code things got out of sequence and because things got out of sequence the part of my genes that are supposed to suppress tumor growth are not there. They’ve been deleted, so any tumor cells pretty much get free reign. There’s nothing there to stop them. They have discovered that if you carry one of these BRCA1 or BRCA2 mutations or deletions, that it can be passed through families and that these mutations/deletions lead to very high numbers of early onset breast and ovarian cancer. (For more information, feel free to check out the links I post at the end of this post.)
So what’s the next step? I’ll be meeting with specialists at the Kirklin Clinic over the next few months. The first in a few weeks to discuss my options. Briefly, those options are 1) Monitor and do tests every 6 months to be sure things are as they should be 2) Have the girls (and eventually the ovaries) removed to decrease your risks or 3) Start a low dose of oral chemo to prevent tumors from growing. Those of you that know me, know which option I will be choosing. Y’all know that I’m a ‘take no prisoners, let’s kick some ass!’ kind of girl, and that’s how I plan on handling this too. So that means that I will likely be facing a double mastectomy with reconstruction at some point in the very near future. (With a mastectomy, your odds drop to a less than 10% chance of getting breast cancer in your lifetime.) I mean, with those kind of odds, why would I do anything else?
So there’s my update. Sorry, it was incredibly long and probably not what you were expecting from me. And again, I’m not posting this because I want your pity or to be fawned or cried over. (Though your good thoughts and prayers over the next few months will most certainly be appreciated.) I’m writing this to encourage you to do your homework. Check your family history. Talk to your parents, grandparents, aunts, uncles. Know your risks! And if you see a pattern of something, ask your doctor. Who knows? It might save your life or your sisters or your mothers or your fathers or your brothers (breast cancer doesn’t just affect women). It might save someone you don’t even know when they read or hear your story. It might just give you a peace of mind.
So for the next few months, you can keep up with what’s going on with me here. I’ll try to keep you all updated without sharing too many private details. And if anyone has questions, comments, concerns, I’d love to hear them. I’m still learning as I go, but I’ll be glad to help in any way I can…
For more information on BRCA1 and BRCA2 genetic testing, visit these links:
Oh, and Warrrrrrrr Eagle! Beat Wazzu! (Y’all didn’t really think I’d post something this week and not mention football, right?!) 🙂