PROPHYLACTIC MASTECTOMY: A PATIENT’S PERSPECTIVE

Considering prophylactic mastectomy? Rest assured, the time prior to surgery is the hardest part. Emotions run high with any sizable decision; a decision involving hereditary cancer risks and alterations to your body magnifies these emotions. Here’s a secret: you’re going to be okay.

Take advantage of the time you have before your surgery to prepare yourself, your family, your home, and your employer for your surgery and recovery.

Preparing yourself for surgery:

Prepare yourself emotionally for any form of reconstructive surgery. Be kind to yourself and take time to fully accept your decision. The weeks before surgery felt as if I were climbing the rungs of a ladder for an emotional high dive. The nerves surged with each step closer I got to the top. As a competitive athlete and former college boxer, I prepared for surgery like I was preparing for a fight. In the weeks before my surgery I upped my workouts and nourished myself with lots of lean protein, fruit, and vegetables. I wanted to be in my best physical shape prior to going under. I went into surgery feeling physically strong and empowered; I made the decision on my terms and not because of cancer.

The day of surgery:

The morning of surgery may be stressful. Adrenaline surged through my body on the way to the hospital. Fear of the unknown will do that. Be confident you made a thoughtful decision, selected your medical team, and are ready for this.

Your medical team will instruct you on things to do and avoid in the hours before surgery. Pay attention as eating or drinking too soon to surgery time may delay your surgery. Arrive at the hospital in comfortable clothes that you can easily slip into after surgery. If you wear contacts, be sure to pack your glasses. Once the IV is in, you’re almost there. The hours of surgery fly by for the patient. One minute the doctors were marking me up and the next I was in the recovery room. Relief washed over me the moment I woke up from surgery. I was awake. I could breathe. I felt like me. I was going to be okay. So are you.

Preparing yourself for recovery:

Although you’ll have to rely on your medical team during the surgery, there are several things you can do beforehand to simplify life during your recovery. Surgery will reduce your mobility and energy levels in the first few days and weeks. I found it immensely helpful to make necessary purchases and preparations ahead of time.

The clothing you will wear in the first few weeks post-surgery likely differs from what you normally wear. Although I wore jeans into the hospital, I was unable to muster the strength to put them on for the trip home. In fact, even leggings were too difficult to maneuver those first few days. Loose yoga or pajama pants are essential. Tank tops with a shelf bra (one size up from your normal size) will be a closet staple for the next few months. Buy at least four. Ditto for zip-up jackets. Be sure to purchase at least three soft non-underwire bras that clasp in the front as well as a non-underwire bra with medium padding for dressier occasions. Bra shopping in the days following surgery is a stressful unnecessary event that can be easily avoided. Finally, cozy robes and slippers make for a lovely recovery ensemble for quiet days at home.

You’ll hear lots of moaning about drains. They are inconvenient and at times painful, but they are not horrible and you won’t have them for very long. I managed to hide them inside loose clothing for outings to the grocery store and for hosting visitors. Showering with them can be tricky, but it’s manageable. I pinned them to an opera-length strand of pearls for a little glamour during an otherwise lackluster time. Of course, a lanyard would work just as well.

Prepare your home for your recovery:

Put fresh sheets on your bed the night before your surgery. Making a bed with new sheets is one of the more difficult household tasks post-surgery. Set up a recliner or a chair and ottoman for resting during the day. It is extremely difficult to lay down post-surgery. It’s even more difficult to sit up. Don’t be afraid to ask for help. Propping yourself up with a body pillow will ease your discomfort greatly. Heart-shaped arm pillows helped too. These pillows doubled as a buffer between my chest and seatbelt for any excursions and errands in the first weeks post-surgery.

Fill all prescriptions ahead of time. This includes picking up other drugstore essentials such as Benadryl, laxatives, Tums, and Bacitracin. I set up all of my medications in a small tray that could easily be transported from my bedroom to the couch. Convenience is key. Consider purchasing a back-scratcher to assuage the itchiness that may arise from the medications, bandages, and limited mobility of your upper body.

Prepare your kitchen. My appetite was limited in the weeks following surgery. I craved plain toast to settle my stomach, but struggled to swallow it due to tightness in my chest. The tightness subsided after a week or two. In the interim, fresh fruit smoothies proved particularly delicious. Move any necessary items to waist level. Opening cabinets and reaching above your shoulder will be difficult for the first week or two. A step stool helps greatly. You will be amazed at how quickly your range of motion improves from week to week.

No matter how quickly your recovery progresses, there will new things you just cant do. Ask for help when you need it. For example, it was surprisingly difficult to wash my hair on my own as I could not raise my hands above my shoulders. After some experimenting, I found it most comfortable to have a friend or family member wash my hair in the kitchen sink with the spray nozzle. Prepare a little station with shampoo, conditioner, and fluffy towels for a your own salon at home. If that doesn’t work, splurge on a blowout or two. They were worth every penny for me. Looking good helped me feel good. Dry shampoo, too, worked wonders.

Preparing for time away from work:

Know your rights under the Family Medical Leave Act. FMLA entitles “eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave.” FMLA provides protection of twelve weeks of unpaid leave in a twelve-month period. Be sure to advise your employer in advance. This allows you to make necessary preparations and them to make the necessary accommodations for your recovery. Although you are not required to identify the exact type of medical procedure you are undergoing, I was very open about it with my employer. I was overwhelmed at the compassion and support I received from so many people in my office. If you are comfortable sharing your story, do so! It started a dialogue amongst the women and men at my firm about hereditary risks of cancer and risk-prevention.

Work with your doctor and employer to determine when you will return to work. Many women take four to six weeks off. Expect exhaustion after the first few days back. Consider part-time work for the first week back. Be good to yourself and set aside plenty of time for rest. It will get better.

The Recovery Process:

Recovery is a journey. Know yourself and how to best guide you on this journey. No two people are alike and, similarly, your recovery will track according to you. I was devastated thinking that I would not be able to run or workout at my usual level of intensity. The fatigue I felt in the first few days quickly erased these thoughts. I adjusted my activity level to my energy and mobility levels each day. With my mom’s encouragement, I started going for walks around my neighborhood a few days after surgery. I don’t think I ever felt so drained during a triathlon as I did walking that first mile. I rested up and gradually eased into longer walks and stationary biking. I attended a handful of sessions with a physical therapist. My physical therapist massaged my scar tissue and provided a variety of exercises to increase my flexibility post-surgery. It was incredible how a brief massage yielded such dramatic results with my range of motion. Five weeks after surgery I was cleared to run again, albeit at a reduced pace. I started (modified) yoga about six weeks after surgery. Some activities, like swimming, took longer to get back into. Nevertheless, I was back to almost normal in less than six months. Recovery takes patience, time, a good physical therapist, and lots of rest. Remember to celebrate the small successes. Be proud of how far you’ve come and confident that you’ll be back to a new normal before long.

Any questions? Feel free to reach out to me at emilyr@brightpink.org.