By Laura Weber
I have debated sharing this. For months. 19 months to be exact. I am usually a very open book. I have brought you all along on my grief journey with my mom, when I had my miscarriages and the trials and joys of motherhood. But, for some reason, this is substantially more difficult to share. It seems much more personal, much more intimate, much more soul baring. There is no coming back from sharing something like this and it’s a bit uncomfortable. But, when I have opened up to people when it has come up in conversation, they have received it with open ears and open arms. And, really the main reason I decided to share was because I had one person tell me that my situation pushed her to get this testing done and another tell me she had considered doing it. If I can help push just one person to gain the knowledge that could potentially be life-saving, well, then here is my soul…but, if you don’t want to know some pretty personal stuff, then quietly exit now!
June 9, 2018. I had just gotten back from a girls’ weekend in the Ozarks. I actually left work a bit early to go home and recover some more! I got a text from my friend, who just happens to me my amazing APRN as well, to give her a call when I had a sec. As soon as I saw the text, I knew what it was about. 7 weeks prior to that day, I had decided to get blood work done to see if I had any of the genetic markers for cancer or “the cancer gene” as we have coined it. I knew with that one call, my life was going to change a little. Now, this isn’t as scary or as awful as receiving the call that you have cancer. I am in no way comparing it to that. I am BEYOND thankful that we have these advances in medicine now, so that I can arm myself with this knowledge. But, it is still extremely terrifying to get the news that you carry a mutated BRCA2 gene and your chances of getting breast cancer are upwards of 80%. Plus, increased chance of ovarian, melanoma and pancreatic cancer. I am thankful that Kristi was the one to deliver the news though because she came at it professionally, but also as a friend. You can’t beat that.
So, as many of you know, I tend to research things. To the point of leaving no stone unturned. It’s quite annoying to be honest. But, sometimes it’s useful. Anyway, I instantly joined BRCA FB groups, mastectomy and hysterectomy groups, reached out to a friend who knew she was BRCA1+ and started looking at my options. Kristi also sent some referrals to a genetic counselor, an oncologist and set me up with a new OBGYN. So, I scheduled meetings and mammograms. I dove in head first, but pretty much had my mind made up before meeting with anyone that I would go the preventative surgery route. I was still nursing Warren, but he was 18 months and I figured he would probably be done soon. My “girls” had done their part – they fed 3 babies for over 5 years! So, I started reaching out to surgeons who performed prophylactic double mastectomies for those with genetic mutations. My searching led us to NYC for a weekend, which was super fun. It led us on trips to Chicago and to New Orleans. I met with some amazing surgeons and thought I had my mind made up. We had scheduled my surgery, a robotic prophylactic double mastectomy with implant reconstruction, for Jan 31, 2019 in New Jersey. But, things fell apart a month before due to concerns around the robotic approach. I was bummed because I had mentally prepared (as much as one can for something like this), we had talked to our bosses at work, etc. But, I took this as a sign that maybe there was something else out there for me. I started to question whether or not I was being too drastic. Maybe I should just monitor and not go to the extreme of taking away perfectly healthy body parts.
But, during this time, I had an abnormal mammogram, which led to an abnormal ABUS, which led to me having to get an urgent ultrasound. This was the scariest few days ever. Darin was out of town, so my Dad came with me and I remember being so scared sitting in the waiting room. All the scanxiety from when my mom would get her scans came rushing back and I was a mess. They took me back and started the ultrasound. I held it together until she left the room to talk to the doctor. I was laying on this cold, hard table with all these horrible thoughts racing through my mind. She came back in after what seemed like 4 years and said they thought it was just lymph node, but needed to get some more images. I was so relieved and just completely lost it. The poor tech probably thought I was insane. They concluded it was a lymph node, but that I would need to get it checked every 6 months and would also need to get MRIs and mammograms every 6 months. After that, I knew I didn’t want to live my life doing this every 6 months.
So, here I am. After I met with the surgeons at The Center for Restorative Breast Surgery in New Orleans this past Summer, I immediately knew that’s where I wanted to go and it’s the type of reconstruction I wanted to have done. I will be using my own tissue for reconstruction, so no implants will be used. The doctors at the Center are microsurgeons who only do this type of surgery, so they are experts. They will reconnect the blood vessels from the donor site tissue to the blood vessels in my chest, so the transplanted tissue will become part of me! It is really amazing and I am so thankful I found these doctors. The breast surgeon is kind, thoughtful and amazing and the microsurgeon leading my surgery is one of the best out there. It’s going to cost a small fortune and that hurts a lot because I feel like I am taking away Disney trips, family beach vacations, etc. But, in the end, I know this surgery will hopefully allow me to do those things for years to come. I think about how my mom was robbed of these memories with her grandkids and pray that my path will be different because of her. She potentially saved me – she was begging her insurance companies to pay for her to get this testing done (it was going to cost thousands of dollars because she was over 60 and already had cancer, so they wouldn’t approve it!). I remember promising her that I would take care of it and do the testing. I didn’t get to it before she died, but her situation is what forced me to do it. I know if she knew she had the gene at my age and could go back, she would have the preventative surgery.
I am aware that some people won’t understand this choice. It is drastic. The recovery is going to be intense and not being able to hold my babies for months makes my heart crumble. The loss of all sensation from my collar bone, around to my armpits, down to my rib cage and my stomach is devastating. I know some people think of it as a boob job (hi, I was one of those people), but it is definitely not. This comes with the severing of tons of nerves, the pain of nerve damage, a new physical appearance, scars, lots of scars and of course the mental toll. I would much rather keep the feeling in my chest, keep the boobs that nourished my children and the boobs that are mine. But, having this surgery definitely beats the alternative, so I know I am making the right choice.
Darin and I head down to NOLA on January 20. Pre-op is January 21st and my 8-12 hour surgery is January 22. We will be gone at least until the 30th. I welcome all of the prayers, good thoughts, etc. that I can get. For me, my family, the surgeons. I am scared out of my mind, but am hopeful. A year from now, I will be so thankful I took this step.
I’m happy to talk about this with anyone who may have questions or may be curious about getting the testing done. If you have a family history of cancers, there are tons of genes that they can test – it’s not just BRCA now. I urge anyone to think about it if you have a family history. It’s scary, but I have always been of the “knowledge is power” mindset.