For many women diagnosed with breast cancer, the day treatment ends is supposed to mark a turning point. The appointments become less frequent. The scans may become a little less daunting. Friends and family breathe a collective sigh of relief.
But for the survivor, life may not feel “back to normal” at all.
She can’t pick up her child. She can’t reach for the plate on the top shelf. She winces buckling her seat belt. A walk to the mailbox feels like she just ran a 5K. Her version of normal no longer exists.
She may still be living with pain, fatigue, weakness or limited movement. She may notice swelling in her arm or changes in her body that make everyday tasks harder. She may struggle with anxiety, body image or the emotional weight of everything she has experienced. She may wonder why, after making it through treatment, she doesn’t feel like herself. This is where rehabilitation becomes essential.
Recovery continues long after surgery, chemotherapy, radiation or other treatment ends — and survivors deserve care that recognizes the whole person: body, mind and life after treatment. Yet one of the biggest barriers to that recovery is something surprisingly simple: many survivors don’t know rehabilitation exists.
Current research and our experience serving survivors highlight a significant gap in education. Too many women complete cancer treatment without being told that specialized rehabilitation can help them address pain, restore mobility, manage lymphedema, rebuild strength and improve quality of life.
In other words, they finish treatment without knowing what comes next.
A woman shouldn’t have to search the internet at midnight to figure out why she can no longer lift her arm comfortably. She shouldn’t have to accept persistent pain as the price of survival. She shouldn’t have to believe that weakness, swelling or difficulty returning to everyday activities are simply things she must learn to live with. And she certainly shouldn’t have to navigate those challenges alone.
Breast cancer rehabilitation brings together specialized physical therapy, exercise, mental and emotional support, therapeutic massage and other supportive services designed specifically for the needs of survivors. It can help someone regain movement after surgery, manage the effects of treatment, rebuild confidence and reconnect with the life she was working so hard to return to.
Unfortunately, access to that care is not equal. Insurance does not cover the full cost of rehabilitation. In fact, only 30 percent of the cost of care is reimbursed. Geographic barriers can make specialized services difficult to reach, particularly for survivors living in rural communities. Transportation, financial hardship and lack of awareness can create additional obstacles.
For many survivors from historically underserved communities, including Black women, LGBTQIA+ survivors and others who have experienced barriers within the health care system, the path to appropriate survivorship care can be even more difficult. That means rehabilitation is not simply a clinical issue. It is an issue of access, education and equity.
We need to do more to make rehabilitation a recognized and expected part of breast cancer survivorship.
It starts with education. Survivors need to hear about rehabilitation before they leave treatment, not months or years later when a problem has become harder to address. Physicians, nurses and other health care professionals need the tools and knowledge to connect patients with specialized rehabilitation. Families need to understand that recovery can require ongoing physical and emotional support.
We also need advocacy. Survivorship care must include more than monitoring for recurrence. It should address how a person is actually living after treatment. Advocating for broader recognition of rehabilitation as an essential component of cancer care can help close the gap between surviving treatment and living well afterward.
And of course, we need philanthropy. Donations make it possible to reach the survivors who might otherwise go without care and provide services where insurance falls short. This bring care closer to communities that have historically been overlooked.
Those funds become something very tangible: physical therapy that helps a survivor lift her arm again. Emotional support that gives her space to process what she has experienced. Therapeutic massage that eases discomfort. Exercise programming that helps her rebuild strength and confidence. Transportation assistance that makes it possible to attend an appointment.
For decades, research has transformed breast cancer care. In short, research has helped more people live. But now, we need to make sure they can live well. It’s estimated there are more than 4 million survivors in the United States, but less than 10 percent of all survivors are referred to rehabilitation. And more than 90 percent of all breast cancer funding goes towards research. This leaves little for survivorship care and a survivor’s lifelong road to healing.
The long road of breast cancer survivorship requires all of us to play a role. Health care professionals and treatment teams who educate ALL patients. Advocates who raise their voices to ensure loved ones experiencing breast cancer know this option exists. Donors who help remove the financial barriers standing between survivors and the support they need.
Rehabilitation should not be the missing piece in a survivor’s recovery. It should be part of the plan from the beginning. Every survivor deserves the opportunity to reclaim her body, her identity and her life, and no woman should have to navigate what comes next alone.
