“I wish I could get a free boob job.”
It is a comment I heard more than once after sharing I was undergoing a double mastectomy. I understand the impulse, people do not know what to say. But the joke reveals something worth examining: how little most people understand about what this surgery actually costs you.
At 28, I found out I carried the breast cancer gene 1 (BRCA1) mutation. At 34, after years of specialist appointments and research, I underwent a risk-reducing bilateral mastectomy with reconstruction. I had watched my mother go through this after her breast cancer diagnosis. Now, at 42, I am supporting my mother-in-law as she navigates human epidermal growth factor receptor 2 (HER2)-positive breast cancer.
The medical care across all three of us has been excellent. The system, however, keeps failing the person behind the diagnosis.
The missing support in oncology care
After my surgery, I turned to Facebook groups and influencers to learn how to manage my hair with complete pectoralis inhibition, a problem that rehabilitation professionals address every day. My 80-year-old mother-in-law is left to struggle with laundry and pet care, the very routines that give her life meaning, without any structured plan. These are not edge cases. They are the norm.
Oncology has a significant occupational therapy (OT) problem. OT and physical therapy (PT) services are chronically underutilized, and patients are paying for it in ways that never show up in clinical outcomes data.
The critical role of rehabilitation
The gap starts before surgery. Pre-operative rehabilitation, including strengthening the core and legs to compensate for post-surgical lift restrictions, modifying the home, planning for childcare and return to work, and learning dressing and bathing techniques before the drains are even in, can meaningfully change a patient’s recovery trajectory. Most patients never receive it.
Post-operatively, the absence is just as stark. Scar management, sensory re-integration, progressive mobility, and lymphedema prevention are established interventions with real evidence behind them. So is addressing what often goes unspoken: sexual health, intimacy, and emotional coping after a surgery that permanently alters your body.
Treating function as seriously as pathology
Women navigating breast cancer and genetic risk deserve a system that treats function as seriously as pathology. The clinical knowledge exists. The professionals exist. What is missing is the will to integrate them into oncology care as a standard, not an afterthought.
A mastectomy is not a cosmetic procedure. It is a fight for your life, and the fight does not end in the operating room.
Marguerite Frank is an occupational therapist.
