Preventive Mastectomy and BRCA FAQs
Since my preventive double mastectomy is only a few days away, I wanted to address some of the questions I've been asked most often about the surgery and the BRCA gene mutation.
How did you find out you had the mutation, and what made you want to get tested?
I have a strong history of breast cancer in my family, so I always figured I was at a high risk. I thought about getting tested for the BRCA mutation for a while but kept putting it off. After my first cousin tested positive for it and I talked it over with my OBGYN and my primary care doctor, I decided to get tested. You can read more about when I initially found out in this blog post.
What is your risk? How likely are you to develop cancer?
My risk of getting breast cancer is around 75%. I also have an increased risk for ovarian cancer (around 15%), melanoma (around 5%) and pancreatic cancer (around 5%). This is specific for my variation of the BRCA2 mutation.
How did you initially react to the news? Did you have trouble trusting God with it?
I was really sad, obviously, when I first found out. I knew the implications and knew that I would have to make some tough choices. Honestly I never struggled to trust God with it. In this big, hard thing I have turned to Him constantly as my source of peace and wisdom. That's not to say it hasn't been difficult or I haven't felt angry or sad or scared, because I definitely have. But He has been a constant source of peace, and I didn't know how people walk through things like this without Him. This diagnosis has never felt totally devastating or like a death sentence.
What kind of doctors have you seen?
My first appointment was with my OBGYN since my risks are highest in the areas that kind of doctor deals with. She gave me names of a breast specialist/oncologist, a genetic counselor and genetic doctor, and a plastic surgeon. Thankfully those names were also recommended to me by multiple other friends in the medical field. I also have to see a dermatologist once a year to monitor my skin, and plan to see oncologist that will help me monitor my pancreas. I'd be happy to give you the names of the doctors I see if you are local to this area and need a recommendation!
When will you have your reconstruction?
Thankfully the first phase of reconstruction will happen in same surgery as my double mastectomy. I'm having DIEP Flap reconstruction at this initial surgery, which basically means they will use fat and tissue from my stomach to build new breasts. Because I don't have a ton of stomach fat (first time someone has told me that haha!) I will do a second phase of reconstruction in a few months where we will do some fat grafting and possibly a small implant. You can read more about my decision to have a mastectomy and more about the DIEP flap procedure in this post.
Does having a mastectomy mean you won't get cancer?
No, it does not guarantee I won't get breast cancer because it would be impossible to get every last cell of breast tissue removed. But it takes my risk from 75% down to around 1%. That's less than a normal woman's risk. And I also will have the other cancer risks to contend with, and will likely get my ovaries removed in my 40s because ovarian cancer is very hard to detect early. Removing them is recommended for people with genetic mutation risks, but it will also put me into menopause so I'm going to put this off as long as I and my doctors feel comfortable with it. I will have to get yearly ovarian ultrasounds and blood work done to try to monitor any changes.
Is it similar to having a boob job?
I have to admit this is the only question or suggestion that has frustrated or hurt me. But I have to realize it’s coming from a place of just not knowing, not trying to dismiss or belittle, which is why I feel it’s so important for me to share my story and hopefully educate people. To be clear, I have zero problems with and fully support people getting "boob jobs", and while I will be rocking fake breasts from here on out, it's not something I would have personally elected to do if it weren't for this cancer risk. They will be removing all of the tissue from my breasts - fat, duct work, everything. Along with that I will no longer have feeling in my breasts. There's around a 10 chance I will lose my nipples because they have to scrape out all the tissue behind them. This is not a surgery I'm excited about having. Maybe one day I'll be able to appreciate that my boobs don't sag, but I'd definitely have preferred to keep what I have!
What are you most nervous about?
I've never had any type of surgery, so I'm nervous about going under anesthesia. I'm nervous about pain after recovery and the side effects of pain meds. I'm nervous the flap procedure will fail and I'll have to go back into surgery with a plan B for reconstruction. Mostly I'm just nervous about the unknown. It's hard to fathom that in a couple of days my body will permanently be very different. I'm nervous about what recovery will be like as far as what I can and can't do. I'm nervous about not being to help and do things with my kids. I'm nervous I'll be sad when I see my body. I can't imagine what it will be like to not have feeling in my boobs anymore. I'm nervous about my husband having to sit in the waiting room while I am in surgery, and then having to take care of me. And while I’m not really nervous or in fear that I’ll die in surgery, I know it’s still a possibility that I could just not wake up. That’s a tough pill to swallow. Having to talk over my living will with Jonathan has been hard. Thinking “I should probably update my kids baby books just in case I die” is a very strange reality I’m in right now. Knowing this isn’t a surgery I have to have, I’m nervous about something going wrong and I could have avoided it. It's all just very weird. That's the only way I know how to describe it. But I still feel 100% confident and at peace with my decision.
How is your husband handling all of it?
Thank God for my sweet husband. Jonathan has been super supportive through every step of it. From sitting next to me as I spit in the container that would be sent off to test, to waiting by the phone with me to get my results. He's been at every appointment, given me his input when I asked for it, encouraged me on every fear I've voiced. He is very supportive and is thankful, just like I am, that I have the option to stop cancer before it starts. That my chances of being here for my boys will greatly increase. That we won't have to deal with the trauma of a breast cancer diagnosis. He has been amazing through it all, and I have zero doubts that he will be amazing through my recovery. I'm a little nervous about him washing and fixing my hair, however ;)
What are your plans for your kids post surgery?
We are so thankful to have a ton of people to help us! My parents will be staying at my house with the boys while I'm in the hospital (3 nights). Then the boys will go to my sister and brother-in-law's house for a few nights, then I have a friend taking them for a day, then help from my mom again, and then Jonathan's parents will take them for a while since they are both retired. Evan starts school about 2 weeks after my surgery so he will come home the weekend before that. And we will just play it by ear with the other two boys depending on how I'm feeling. They'll stay at Jonathan's parents on weekdays while he is at work, and then they will come home on the weekends. We will do that until I am confident I'll be able to take care of Gibson - the main concern is with lifting him in and out of bed, the car seat, high chair, etc. And toddlers just need to be picked up and held a lot. So until I'm able to do that, I'll have to have help. I plan to fully document and share my recovery so hopefully I'll have some good advice and feedback about the recovery timeline after that. I know that was my main concern going into all of this!
If you have any other questions feel free to leave them in the comments, or shoot me an email if you'd prefer. Thank you to every single one of you who have encouraged me and prayed for me through all of this. It means more than I could ever say!
