For many breast cancer patients, the challenges don’t end on the last day of treatment. They continue to suffer from the aftereffects of the disease and its treatments—pain, fatigue, physical limitations, foggy thinking, fear. In fact, according to a recent study in the journal Cancer, almost two-thirds of breast cancer patients report cancer complications that linger for many years.
It doesn’t have to be that way…but sadly, it often is. “After treatment is over, many patients are sent away by their oncologists, having been told only to exercise and come back for a checkup every three to six months. That’s not good enough!” said Julie K. Silver, MD, an associate professor of physical medicine and rehabilitation at Harvard Medical School, author of After Cancer Treatment: Heal Faster, Better, Stronger and a breast cancer survivor herself.
What could help breast cancer survivors recover more fully? Cancer rehab, a program of individualized, targeted, multidisciplinary therapies. “Cancer rehab is far more than standard follow-up care. It’s a way of dealing with and minimizing the long-term impairments that breast cancer and its treatment can cause,” said Dr. Silver.
You might think that breast cancer patients would be getting rehab services as a matter of course, but that’s not the case. Dr. Silver cited one recent study showing that, while 90% of breast cancer survivors need rehabilitative care, fewer than 30% are getting it. The reason is that many patients—and many doctors—are unaware of this vital resource.
Breast cancer survivors typically suffer some if not all of the following long-term difficulties…
- Pain in the chest wall where muscles and other tissue were cut for a mastectomy or lumpectomy.
- Frozen shoulder (adhesive capsulitis), a condition characterized by stiffness and pain in the shoulder joint.
- Lymphedema—swelling, discomfort and/or loss of function in the arm closest to the affected breast, which result from lymph node removal and scarring that allow fluid to build up.
- Neuropathy, a nerve problem that causes pain and numbness, typically in the hands and/or feet.
- “Chemo brain,” the well-documented phenomenon of feeling less mentally sharp than before chemotherapy.
- Generalized weakness, which makes it difficult to lift things or carry out other normal tasks.
- Excessive fatigue that interferes with the ability to exercise, work, socialize or enjoy life.
- Fear, anxiety or depression brought on by the battle with breast cancer and continuing concerns about a possible recurrence.
Dr. Silver said that many patients recovering from breast cancer (and other cancers) come to her after enduring years of discomfort…and they blame themselves, saying, “I should have asked my doctor for a rehab referral.”
But, she said, “I tell those patients that they shouldn’t have to ask—rehab should be a routine part of treatment for all cancer patients, regardless of what type of cancer they had.”
Good news: Starting in 2015, it will be routine—because the American College of Surgeons’ Commission on Cancer (CoC) has mandated that all hospitals provide after-care plans for cancer patients. If an institution fails to have such a plan in place, it will not be accredited by the CoC.
If you are currently being treated for breast cancer or are a breast cancer survivor experiencing lingering complications, there is absolutely no reason to wait until 2015 to demand a rehab plan. Most cancer rehab services are already covered by insurance and Medicare.
WHAT REHAB CAN DO FOR YOU
The exact services provided in rehab depend on the type of cancer and on each individual patient’s needs. Breast cancer rehab typically includes care from any or all of the following types of specialists…
- Physiatrist, a physician who specializes in nerve, muscle and bone problems that affect how you move. After breast cancer, a physiatrist’s care might center on reducing the effects of neuropathy and easing ongoing pain. For example, physiatrists can order specialized tests and prescribe medications or physical therapy to help.
- Physical therapist (PT), who can develop an individualized exercise program that accommodates current limitations while focusing on restoring stamina and strength…increasing range of motion in the affected arm and shoulder…and addressing problems with balance that can result from chemotherapy’s effects on the nervous system. In addition, a PT can provide hands-on therapies that minimize lymphedema.
- Occupational therapist (OT), who can help overcome challenges in performing tasks of daily living. For instance, in the case of shoulder problems or lymphedema, an OT can help a breast cancer survivor master difficulties related to getting dressed, grooming and carrying packages. For a patient experiencing chemo brain, an OT can suggest strategies for improving concentration, memory and organizational skills.
- Speech-language pathologist, who can help breast cancer patients recover speech or language skills that have been altered by cancer treatments. Speech therapists also may treat cognitive problems, including chemo brain.
- Psychologist, who provides counseling to ease fear, anxiety and a sense of isolation or loss—so survivors can get back to enjoying their lives to the fullest.
Gold STAR: After recovering from cancer herself, Dr. Silver developed the STAR Program (Survivorship Training and Rehabilitation) Certification for hospitals and cancer centers, which involves a protocol for best practices in cancer rehab. More than 100 hospitals and cancer centers nationwide have signed up for STAR Program certification so far, and it is offered at several hundred sites. For information and/or a referral to a STAR Program in your area, visit the Web site of Oncology Rehab Partners, an organization founded by Dr. Silver and dedicated to advancing survivorship care.
For much more on breast cancer from Bottom Line: See “Breast Cancer Guide: Prevent, Detect, Treat, Recover.”