What is Cancer Rehabilitation?

Improving Physical and Emotional Well-Being After Cancer

Cancer rehabilitation is care that focuses on maximizing a person's physical and emotional functioning with cancer, and can be started before, during, or after treatment. Rehabilitation has long been considered standard-of-care for someone who has had, say, a heart attack or a knee replacement, but cancer rehabilitation is a relatively new concept. This, however, not due to a lack of benefit or need. With the combination of a growing number of cancer survivors in the United States and a significant number of these people coping with long-term side effects of treatment, the need for rehabilitation is expected to grow substantially in the near future.

Since cancer rehabilitation is relatively new, many people are unaware that they could benefit from these therapies. As a quick measure of whether you could benefit you may ask yourself if there is anything that you could be before cancer (or handle emotionally) that is more challenging today.

Defining Cancer Rehabilitation

Cancer rehabilitation includes a wide range of therapies that are designed to help a person maximize their functioning physically, emotionally, spiritually, socially, and financially.

Who Is a Cancer Survivor?

Before talking about cancer rehabilitation, it's important to define exactly what is meant by the phrase "cancer survivor."

A cancer survivor is defined as anyone who has been diagnosed with cancer, from the day they are diagnosed until the end of their life.

Cancer survivorship does not begin when treatment is done (if it is ever actually done) but begins at the time of diagnosis. It involves living with, through, and beyond a diagnosis of cancer.

Who May Benefit From Cancer Rehabilitation?

Cancer rehabilitation can be started at any time after a diagnosis of cancer. When used before or during treatment, it has been sometimes referred to as "cancer prehabilitation." It can be used for people with any type of cancer, and may be helpful for people throughout the spectrum of cancer prognoses, from very early-stage to advanced cancers.

The Need

As of January 2019 there were 16.9 million cancer survivors in the United States, and this number is expected to grow substantially over the next decade. At the same time, studies suggest that a significant number of survivors experience late effects of cancer that interferes with their quality of life. Among childhood cancer survivors this number is even higher, with 60% to 90% of survivors experiencing late effects related to treatment.

Many cancer organizations now consider cancer rehabilitation to be a crucial part of cancer care, including the National Comprehensive Cancer Network Clinical Practice Guidelines. Despite this, a 2018 study found that the majority of National Cancer Institute designated cancer centers (centers that stand out as being the leading institutions in the research on and treatment of cancer) did not provide survivors with information on cancer rehabilitation.

There are many potential reasons for this, including time constraints in physician's offices, a system that focuses on treatment rather than quality of life, and a lack of solid programs that address rehabilitation.

Therapies and Services

There are many potential therapies that may be offered as a part of cancer rehabilitation, and the approach most often includes a cancer rehabilitation team. These therapies can focus on specific issues that cancer survivors face, but can also focus on general lifestyle and exercise interventions that promote the best quality of life possible. The team may include:

  • Physiatrists (physicians who specialize in physical medicine and rehabilitation): A physician often leads a cancer rehabilitation team and helps determine what therapies may be effective.
  • Rehabilitation nurses
  • Physical therapists: Physical therapy can help with many issues related to cancer as well as general deconditioning.
  • Occupational therapists: Occupational therapy can help people with activities of daily living with therapy or by helping them make adaptations.
  • Lymphedema specialists
  • Pulmonary therapists: Pulmonary rehabilitation has been used for some time for people with chronic obstructive pulmonary disease (COPD), but its value with lung cancer has only been recently recognized.
  • Speech-language therapists
  • Nutritionists
  • Counselors (this may include counselors who specialize in particular areas such vocational counselors): Counseling may also include families, as cancer is a family disease that is not suffered in isolation.
  • Recreational therapists
  • Social workers
  • Chaplains
  • Others: Therapists may also help with concerns such as smoking cessation and much more.

Issues Addressed

The goal of cancer rehabilitation is to maintain or restore physical, emotional, and sometimes spiritual functioning whether at home or the workplace. Some of the issues that may be addressed include:

Deconditioning

Deconditioning is common with almost any type of cancer, and can have a number of causes including simply the time spent going to appointments and sitting and waiting. While often dismissed as more of a "nuisance" symptom, deconditioning can have a significant impact on quality of life as well as lead to further disability.

As with many areas of rehabilitation, studies are in their infancy, but one study found that a rehabilitation program was very effective for recovery from deconditioning in people with blood-related cancers.

Pain

Pain is extremely common in people living with or beyond cancer. From chronic post-mastectomy pain to post-thoracotomy pain, and much more, pain can reduce the quality of life and lead to depression as well. The particular therapies that are helpful will vary with each person, but asking for a consultation is a first step in improving your life. Many people are unaware that there are things that can be done, and some of these side effects of treatment can be improved or eliminated.

Fatigue

Cancer fatigue is very common among people with cancer, and even with early-stage cancers can persist for years after treatment is completed. Therapy for cancer fatigue often begins with ruling out potentially treatable causes (there are many, including hypothyroidism related to cancer treatments). If treatable causes are not found, there are many therapies that may reduce fatigue or at least help people cope better.

Lymphedema

Lymphedema is common in people who have had breast cancer, especially after a lymph node dissection or sentinel node biopsy. It may occur with many other cancers as well. A certified lymphedema specialist can be very helpful, and many people are surprised to learn that they don't have to live with the degree of discomfort they had before.

Peripheral Neuropathy

Peripheral neuropathy, the all-too-common pain, numbness, and tingling in fingers and toes, is one of the annoying long term side effects of chemotherapy. While neuropathy is not usually "curable" there are a number of modalities that can reduce pain. Therapy can also reduce complications related to neuropathy, such as falls.

Cognitive Concerns

Cognitive changes such as memory loss, difficulty multitasking, and "brain fog" are common after chemotherapy as well as other cancer treatments. For example, women who are treated with aromatase inhibitors for breast cancer have also been found to experience cognitive changes. There is not a quick fix to these annoying changes now coined chemobrain, and treatment usually includes a range of therapies that can vary from "brain training" to supplements.

Stiffness/Fibrosis

Surgery can lead to fibrosis (scar tissue formation) and stiffness, and fibrosis is also one of the long term side effects of radiation. While talked about less often than some other side effects of treatment, discomfort due to fibrosis from breast cancer as well as other types of cancers and treatment can lessen your quality of life. There are a number of different treatment modalities that have been tried, and a combination is usually most effective in reducing pain and improving movement.

Balance Problems

Balance problems may occur with brain tumors and metastases to the brain, but are common with cancer in general. Not only can this reduce your quality of life, but it can lead to falls. Physical therapy can be helpful from both a treatment and a prevention standpoint.

Depression

Depression is far too common in people living with or beyond cancer. In some cases, such as with lung cancer and depression, the depression may actually be related to inflammation, with treatment of inflammation being the mainstay of treatment.

Not only is it unpleasant to live with depression, but the risk of suicide in people with cancer is concerning. In contrast to what people may first think, suicidal thoughts are more common early on after a diagnosis and can occur even in people who have highly curable tumors. Many people hesitate to ask about depression ("shouldn't you be depressed when you have cancer?") but addressing this is important. Treatment does not necessarily mean medications, and a combination of modalities used in cancer rehabilitation is usually most effective.

Stress and Anxiety

Anxiety is common across the board in people with cancer. Whether your tumor is active, or if you have no evidence of disease but carry the fear of recurrence, anxiety is the norm. Surprisingly, many people who have had cancer feel they are less able to deal with day-to-day stressors, even when minor, than before cancer.

Counseling with someone who understands cancer can be invaluable. Education on stress management, integrative therapies such as yoga or massage, and much more can not only help you cope with the stressors brought on by cancer, but normal stressors in our lives. Some cancer centers have even offered classes in "resilience training for cancer survivors" recognizing this need.

Dietary Issues

Nutrition counseling can help with many common side effects of cancer treatment, help people cope with weight changes (either up or down), and for some people, may help treatment work better. For example, we've recently learned that having a healthy and diverse gut microbiome (a wide array of healthy gut bacteria) may play a significant role in the effectiveness of immunotherapy.

Sleep Issues

Sleep issues are almost the norm after cancer treatment. What we are learning is that not only can sleep disorders affect your quality of life, but may even affect survival.

Other Issues

There are many other potential issues that may be addressed in a good cancer rehabilitation program. A few other examples include:

  • Employment/vocational concerns
  • Financial concerns
  • Relationship problems

Evidence

As noted, studies have only recently begun to focus on the effectiveness of cancer rehabilitation in improving the lives of people living with and beyond cancer. That said, research thus far has been very encouraging and suggests that nearly anyone who has had cancer could benefit from at least seeing if any of the modalities might be helpful.

When thinking about rehabilitation, many physicians first think of people who have survived cancer and completed treatment, but even in people with advanced cancer, palliative rehabilitation has been shown to have a significant impact on a person's ability to get around and do things (mobility), safety, and quality of life.

Even early on after a diagnosis, rehabilitation (or prehabilitation) might make a difference. A 2018 systematic review found that people with colon cancer who were undergoing surgery had an average hospitalization that was two days shorter if they underwent nutritional rehabilitation without exercise therapy prior to surgery.

Emotional Needs

Addressing the emotional needs of cancer survivors is also important in more than one way. Certainly, anxiety and stress are common in people with cancer, but unaddressed emotional concerns can show up in physical ways as well. One study found that emotional well-being predicts long-term prognosis after physical illness. Given that fear of recurrence and progression is widespread, and that many cancer survivors have been found to have symptoms consistent with posttraumatic stress, this is a large unmet need.

As we hear more and more about the "financial toxicity" of cancer, the need for cancer rehabilitation becomes even clearer. At the same time that medical problems are a leading cause of bankruptcy in the U.S., cancer rehabilitation may both reduce disability and the need for early retirement.

With many people involved in cancer advocacy, we are hearing more and more about "patient empowerment." Cancer rehabilitation can be empowering as well, and can give people ownership over their physical functioning after cancer. It's important to note that amidst all of these long-term side effects of treatment, positive changes are often seen in people with cancer as well. Not only is posttraumatic growth common, but it appears that people can maximize their posttraumatic growth; sometimes by finding ways such as this to feel empowered.

Risks

Along with benefits, the potential risks of rehabilitation must be addressed. Cancer therapies can sometimes lead to conditions such as osteoporosis that could increase the risk of a fracture with physical therapy. Being able to weigh the risks and benefits of any specific therapy is important, and requires providers who are educated in both the needs and special cautions required in treating cancer survivors.

Locations That Offer Cancer Rehabilitation

At the current time, the quality of cancer rehabilitation can vary significantly among cancer centers. In 2014, the Commission on Accreditation of Rehabilitation Facilities intiated accreditation, but too few accredited facilities are available (as of 2018, only nine facilities were accredited). While physical therapy and occupational therapy are more widely available, they may not specifically focus on people coping with concerns related to cancer, and other services may be present.

If you believe you could benefit, talk to your oncologist. Cancer support groups and communities are another place where you may learn of centers that provide rehabilitation. On Twitter, you can search for information on cancer rehabilitation using the hashtags #Cancerrehab and #oncology rehab.

For those who are unable to travel, telerehabilitation may be an option, and a 2019 study found that such as program was able to help people with advanced cancer maintain their independence.

A Word From Verywell

Cancer rehabilitation could likely make a big difference in the quality of life for many cancer survivors, though both the research on and availability of good programs are in their infancy. The fact that these issues are now being addressed, however, is cause for hope. Physicians are recognizing that caring for patients includes more than treating their tumor, and quality of life issues are moving to the front burner. It's still very helpful, however, to be your own advocate and ask for services that you believe might be beneficial. Sometimes it's cancer survivors who are educating oncologists, rather than the other way around.

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Article Sources

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