Editor’s note: This piece was originally written on Feb. 9, 2016. Its current publication date reflects an update.
Shortly after joining Healthline, Sheryl Rose found out that she had the BRCA1 gene mutation and was at risk for breast and ovarian cancer.
She chose to go ahead with a bilateral mastectomy and oophorectomy. Now with the surgeries behind her, she is on the road to recovery. Read on for her advice to others who are going through similar ordeals.
I am now 6 weeks out from my bilateral mastectomy and reconstruction, and I have had some time to reflect. I realize this has been the hardest year of my life, but I’m happy with the decisions I made.
BRCA1 doesn’t have to be a death sentence if you take control of the situation, and that’s exactly what I did. And now that the hardest part is over, I’m going through recovery — both physically and emotionally.
I think back to 6 weeks ago and how nervous I was before the surgery. I knew that I was in very good hands and had a dream team lined up — Dr. Deborah Axelrod (breast surgeon) and Dr. Mihye Choi (plastic surgeon).
They are two of the best at NYU Langone and I felt confident that all would go well. Still, I have a few things I wish people had told me before I went in for surgery, and so I want to share what I’ve learned.
We’ll call them “postsurgical suggestions.”
The first night is hard, but not unbearable. You’re going to be tired, and it won’t be so easy to get comfortable or get a lot of sleep in the hospital.
Just know that things improve greatly after the first night. Don’t be a martyr when it comes to pain medication: If you need it, take it.
When you first go home, it’s still tough to move around. Make sure you don’t go home alone, as you’ll definitely need someone to be there to take care of you.
One of the toughest parts is getting in and out of bed. By the second or third night, I figured out that it’s helpful to sleep on a low bed or even on the couch because then you can just roll out of bed.
After a bilateral mastectomy, you won’t really have the use of your arms or chest (this may be slightly less the case with a single mastectomy). My tip is to do some situps before your surgery.
No one ever told me this, but your core strength is very important during those first few days. The stronger it is, the better.
You will rely more on your stomach muscles than what you’re used to, so it’s best to make sure the core is ready to handle the job.
I know this sounds a little strange, but again, these are just the little things that make that first week of recovery that much more pleasant.
Before surgery, you want to practice wiping in the bathroom with both hands, because you don’t know which arm you will have better range of motion with.
Also, invest in some baby wipes because that makes the process a little easier. This is just one of those things nobody ever thinks about, but believe me, you’ll be glad to have this little tip.
Becoming an ambidextrous wiper is the last thing you want to worry about after major surgery.
You’re going to be attached to several drains after a bilateral mastectomy, and even if you think you know how to use them, let the nurses show you and your caregiver how to empty them properly.
We thought we knew and, sure enough, I ended up with a blood-soaked dressing before we were shown how to do it right. Not a crisis, just annoying and pretty gross.
You need lots of pillows in all different shapes and sizes. You could need them under your arms, between your legs, and supporting your head and neck.
There’s no way for me to know how you’ll feel the most comfortable. It’s a bit of a trial and error thing, but I was happy to have pillows everywhere.
Even 6 weeks out, I still sleep with two small heart-shaped pillows under my arms that are designed specifically for postmastectomy patients, and I love them!
Not everyone needs it, but if you’re at all interested, I think physical therapy is a great thing to look into. I’ve been doing it now for 3 weeks and I’m happy I made the decision to do so.
Your surgeon can certainly refer you to someone. I’ve found that it’s been really helpful with improving my range of motion and some of the swelling I’ve experienced.
It’s not for everyone, and even if the doctors say you don’t need it, I promise it can’t hurt — it’ll only help your recovery.
Physically, I’m feeling better every day. I took a month off from work to heal, and now that I’m back to work and moving around, I feel even better.
Sure, it feels a little strange sometimes with my new implants, but for the most part, I’m feeling back to my old self.
Beyond the physical recovery has been, of course, the emotional journey. I sometimes look in the mirror and wonder if I look “fake.”
My eye immediately goes to all the imperfections, not that there are many, but of course there are a few. For the most part, I think they look great!
I joined a community on Facebook for BRCA, where I read other women’s stories about what they call their “foobs” (fake boobs), and I’m glad to see everyone has a sense of humor about it.
Each day, more and more, I’m getting used to the idea and the lack of feeling, and realizing that change is part of life. And, let’s face it, none of us are perfect.
I’m still completely grateful that I had the opportunity to do something proactively, and hopefully will never get breast cancer (I still have a less than 5 percent risk). That would make it all worth it.
As part of my emotional recovery, I’ve been really trying to get involved and raise awareness by writing and volunteering.
Through my research, I learned about the Basser Center for BRCA at Penn Medicine. They’re the leading research center for BRCA-related cancers in both men and women, and they are doing amazing things.
I reached out to them and shared my story and inquired about ways to get involved, beyond donations.
I’m going to be participating in an awareness campaign that’ll distribute posters to synagogues in my area, to help the center reach Ashkenazi Jews, who are the most high-risk group for BRCA mutations.
I’m so happy to have a chance to give back and maybe make just one more person aware of BRCA and the choices they have.
Overall, I’m doing great. Some days are more challenging than others. Some days, I look at a picture of my old breasts and think how much more simple my life would have been if none of this had ever happened.
But most days, I take it in stride and am reminded to make the most of what I’ve been given.