Prophylactic Double Mastectomy: Frequently Asked Questions

A prophylactic double mastectomy is a preventive surgical procedure in which both breasts are removed to significantly reduce the risk of developing breast cancer. This operation is often considered by individuals who have a high risk of breast cancer due to genetic factors, such as mutations in the BRCA1 or BRCA2 genes or a strong family history of the disease. By removing nearly all breast tissue where cancer could potentially develop, the procedure aims to lower the likelihood of breast cancer by up to 90-95%. I had a prophylactic double mastectomy because I was diagnosed with BRCA 2+ with an 80% lifetime risk of getting breast cancer. 

I had a nipple-sparing prophylactic double mastectomy with nerve preservation. For reconstruction, I had one surgery which removed the breasts and then went direct-to-implant to place over the muscle silicone implants with MD Anne Peled and MD Ziv Peled. Before having the mastectomy, I had a breast reduction, which helped to ensure that my breasts would be an adequate size to spare my nipples. Without the breast reduction and lift, my nipples would not have been in the position and shape that they needed to be to place them on the new faux breasts.

Many women have a staged mastectomy where they have the breasts removed, have expanders placed, and then several months later, they have implants placed. Since I travel for work as a traveling speech pathologist, the expanders never felt like a good option for me because you have a range of motion and weight lifting restrictions with the expanders for multiple months. Direct to implants was the right decision for me, and I’m happy I went that route. 

How I Prepared For Surgery

When it came to preparation for the surgery, I prepared mentally, physically, and spiritually. It took me several years from the time I was diagnosed with BRCA 2 until I was mentally and physically at a place where I felt comfortable getting the mastectomy. That journey is a whole other story (which I’m working on writing!). 

Here are the things that I did before surgery for a prophylactic double mastectomy: 

• Found caregivers who could be with you for the first two weeks after surgery. You’ll need somebody to drive you home from surgery, assist with your meds, and help with draining your drains twice a day.
• Got 6 weeks off of work. This wasn’t hard since I take contracts.
• Grounded myself mentally and spiritually. Practiced daily journaling and meditation. Created a positive outlook for the surgery and manifested easy healing.
• Let go of people and things that weren’t pushing me forward positively. I ended many significant relationships in my life, including a 6-year romantic relationship, in the months leading up to the mastectomy. 
• Completed a Boudoir photo shoot as a tribute to my original breasts. 
• Ate a healthy, natural, whole-food diet.
• Stopped drinking any alcohol. 
• Cut back on caffeine intake to 2 cups a day (I usually drink 3-4).
• Drank at least 60 oz of water a day.
• I ate extra fiber and took a fiber supplement.
• Modified my house so that everything was at shoulder height or below. I also got stepping stools, which helped me if I forgot something. 
• I stocked my fridge/freezer with healthy meals I could heat up quickly.
• Frequent exercise, especially core and thigh strengthening exercises.
• Buy all the things needed to help with recovery from the prophylactic double mastectomy. 
• I practiced going from a lying down position in my bed to a standing position without using my arms by rocking my core. During my breast reduction surgery, I found this movement to be one of the hardest to perform independently. I had it mastered by the time I had the mastectomy and didn’t need any assistance to get out of bed at all after surgery. Here is a video of what I did to prep:

How Was the Recovery from a Prophylactic Double Mastectomy Direct to Implants?

While I struggled for years over the decision of whether to have a mastectomy or not, I’m so happy that I completed the mastectomy prophylactically versus having one done if I had cancer. Going through the surgery on my time at a time when I was young and in good health was a significant blessing. 

This may be hard to believe, but recovery from the mastectomy was a breeze. Again, I think it had a lot to do with the place I was physically, mentally, and spiritually going into the surgery. I was young (38 years old) when I had the surgery and was in good health. I had the privilege of being able to eat well, exercise, and reduce stress before the surgery. 

The hardest part of recovery was having drains for eight days after surgery and having to take it easy and follow weight lifting, exercise, and range of motion restrictions. I wanted to walk around and exercise but knew I had to take it easy. Also, constipation post-surgery was annoying. Unfortunately, I took more harsh-acting senna pills to clear the constipation, and it caused painful bloating for a day. I recommend something less harsh, like Colace. 

You will need somebody to be with you for the first 48 hours after surgery. They will need to assist you home from the hospital, ensure you’re taking meds as prescribed, and assist with your drains. Once those first few days have passed, you can do most things independently if everything is at shoulder height and below, and you learn how to drain your drains. I did have a friend with me 24/7 for the first two weeks after surgery, and I don’t regret it at all. The extra help was a boost toward my recovery.

What Were My Restrictions After Surgery?

I’m sharing my restrictions, but yours could be different. Having immediate reconstruction will result in a different recovery process from getting expanders or, say, a DIEP flap. Again, I chose the direct-to-implant route because I believed it would be the easiest way to recover. At exactly six weeks after surgery, I packed up my car solo and drove 1,000 miles to my next travel healthcare job. My story and recovery may look different than yours.

• The first 48 hours after surgery, it was recommended I don’t make any life decisions because I would be feeling the effects of anesthesia.
• I was not allowed to drive home after surgery, and after the first two days, I wasn’t allowed to drive if I was on narcotic painkillers. 
• I could not raise my hands above my shoulders for two weeks or lift more than 5 pounds.
• After two weeks, I could raise my hands and lift up to 10 pounds.
• After six weeks, weight-bearing restrictions were lifted.

My look with drains post-surgery 

Did I Have Any Pain After The Prophylactic Double Mastectomy?

No, I didn’t. I never took any opioids for pain. I did have a nerve block before surgery, which was supposed to prevent pain. As prescribed, I took Ibuprofen 2x a day for two weeks to help inflammation. I did not need it for pain. 

Once I could lift my arms above my shoulders, I had some tightness in my chest. Performing home exercises prescribed by my doctor helped to stretch things out. I then went to one physical therapy session with a physical therapist specializing in oncology. She relieved the tension in my chest in one session. From there, I got occasional massages and incorporated chest stretches into my daily routine. 

Am I Glad I Got a Prophylactic Double Mastectomy?

This is a resounding YES! I’m so happy with the results from an aesthetic perspective and the ease of recovery. Having the peace of mind of not getting breast cancer feels like a gigantic weight lifted off of my shoulders. On a deeper level, the surgery forced me to focus on myself and my health and wellness. The process of having this surgery made me stronger in every way. 

Has Anything Unexpected Been Challenging in the Year Post OP?

As we make our way into the fall of 2024, it’s been almost one year since I had the prophylactic double mastectomy. I’m often asked if random things are hard post-op. e.g., “Is swimming hard?”, “Is driving hard?”, “Is lifting hard?”. Overwhelmingly, no. Nothing has come up in the last year that I found challenging after the initial six-week recovery period. I truly resumed my old life as it was. Again, if I knew that things were going to be this easy, I would have gotten the surgery performed years ago.