Rehab Therapies for Cancer & Rare Disease Survivors

If you or someone you care for has undergone treatment for cancer or a rare disease you likely notice changes in physical and cognitive functioning. Treatment and recovery is exhausting. Working with a rehab specialist can help you learn new ways to manage your energy and learn to adapt to the new changes.

If you are noticing that you can't do all the things you want to do because of low energy, physical or cognitive limitations then read through this section to learn how physical therapy, occupational therapy and speech therapy can help!

Speech Therapy

What is speech therapy and what are the overall goals of care?

Speech therapy is a rehab service that helps people in the areas of speech, communication, cognition, and swallowing with the goal of maximizing functional skills related to these areas to empower people to engage and be present in their lives. When working in cancer care rehabilitation a speech language pathologist (SLP) will typically focus in areas of language, cognition, and swallowing.

When is speech therapy helpful after or during treatment?

Speech sound production
Language deficits- including difficulty finding specific words and reading
Social communication
Changes in voice
Fluency
Cognitive deficits- including changes in memory, attention, organization
Feeding and swallowing

What would an initial assessment with a Speech Therapist be like?

An initial SLP assessment would be based on the primary concern or issue that initially brought the person to seek care. Then the SLP and individual would establish mutual goals of care to focus each session on. For example, if a person was reporting difficulty remembering specific words, the session would include spending some time talking about moments words are forgotten and then they would complete a formal cognitive-linguistic evaluation. Another example is if a person was reporting difficulty with food getting stuck in his or her throat, the session would focus on the specifics of when food is getting stuck and then proceed to a swallowing evaluation.

Once an evaluation is complete, the SLP will work with the person to develop specific goals to address the areas of need through education and exercises.

Swallow Therapy for BMT, chemotherapy, or radiation

For the adult population, SLP support depends on the underlying condition. When a person is going through a BMT, SLP may be asked to assess for swallow safety and make recommendations for diet modifications to maximize safety and oral intake in the setting of mouth and/or throat pain. For individuals with head and neck cancer, SLP follows the preventative approach and gets involved as early as possible. This is because we understand how radiation impacts the muscles of swallowing and there is a lot of evidence supporting the benefits of early intervention and exercise. For individuals with cognitive changes post chemo, SLP intervention usually occurs later, after a person recognizes these changes and is at a place where he or she is ready to seek out assistance.

Speech therapy when language development is impacted by treatment

For children, SLP could be involved for reasons beyond the underlying condition as these children might be going through treatment when they are also developing their language and speech skills. Due to this a speech therapist might be involved in supporting this ongoing development.

Speech Therapy for pre-existing conditions

Another reason for SLP involvement is if a child has a pre-existing condition that requires intervention. Some of these conditions would include:

Examples of pre-existing conditions that may benefit from speech therapy

Apraxia
Autism Spectrum Disorder (ASD)
Brain injury/concussion
Cancer
Cerebral palsy
Cleft lip and/or palate and craniofacial anomalies
Developmental delay
Feeding and swallowing difficulties (dysphagia/aspiration)
Genetic and chromosomal disorders
Hearing impairments
Pervasive Developmental Disorder (PDD
Social communication deficits
Traumatic brain injury
Velopharyngeal dysfunction/insufficiency (VPD/VPI)
Many other complex medical conditions

Benefits of speech therapy for survivors

The areas that SLP’s support have a huge impact on people’s quality of life and no one should feel as though he or she is alone with these challenges. A SLP is able to provide physical, mental, and emotional support to maximize his or her functioning and reduce frustration related to these deficits.

Physical Therapy

What is the overall goal of physical therapy for survivors?

The goal of physical therapy is to maintain and improve functional movement and to enhance quality of life.

Physical therapy helps you leave the hospital and get back to doing the things that you love to do." Engaging in physical therapy early on, during some of the hardest days, is important so that you can maintain your physical functioning so that you don't have to spend even longer in physical therapy sessions.

Engaging in physical therapy is something that people have control over both in and outside the hospital. People can decide how hard they can work each day. Some days you may be more tired and have less energy, and other days you might have a lot of energy and can participate longer. This concept improves self-awareness and self-efficacy when performing daily activities as well.

Reasons to work with a physical therapist

There are many reasons why someone would work with a physical therapist, it really depends on their goals and medical history. Some of the reasons include:

People should consider working with a physical therapist when they are physically having a hard time doing the things that they want to do. Or, if they find that the things they used to be able to do, start causing them to be exhausted, short of breath, or requiring significant recovery time.

Physical therapy recommendations when hospitalized

Get out of bed everyday and build routines that promote physical movement, throughout the day. Standing for a bit at the sink when brushing your teeth, or standing while taking a shower. Both of these activities can be really challenging for some people, so practicing every day can help build endurance.

Also, prioritize time to work with the physical therapist. Schedule your activity and rest time so you are awake and ready when the physical therapist gets to your room.

Activities and exercises to avoid

This is dependent on you as an individual. A physical therapist can help you design a routine that fits your needs and works towards your goals. Specific things to keep in mind would include: platelet levels, recent injury, skin integrity, balance and stability, recent surgery or procedure, and nutritional status.

Getting started with physical activity

Start with 5-10 minutes of aerobic exercise. Then build up everyday by 2-5 minutes if well tolerated. If you notice that you are exhausted after your activity and you are taking long naps or needing multiple days to recover, then ease-up on the activity by decreasing the length of time and your effort.

A good way to think of it is to use your own 'perceived exertion' as a guide. Perceived exertion is just how hard you feel your body is working, which helps gauge what your heart rate is. Think of perceived exertion on a scale of 6-20 and aim for an effort between 10-14. Each person's rating will be different, so don't worry if your rating of '12' is different from someone else's. Work with your physical therapist on finding activities that are right for you.

Considerations when going home from the hospital

When coming home from the hospital, it is easy to let the tired take over and stay in bed or on the couch, not moving around. Physical therapists want to see people engaging in the activities that they really love doing, and after leaving the hospital that will take intentional work and effort.

Rehabilitation care is also an important part of continuing to make progress. It's vital to make sure people start working with their physical therapist and occupational therapist early on to make sure progress continues.

Occupational Therapy

What is occupational therapy?

Occupational therapy helps people across their lifespan participate in the activities that they want and need to do in their daily lives. As occupational therapists we ask the question of “What is important to you? What do you want to do?”.

When should you work with an occupational therapist?

If you notice that you often walk into rooms and don’t know why you went in there.
If you have poor concentration or are getting distracted more than usual.
If you are avoiding activities like showering or doing laundry because they tire you out.
If you are feeling more fatigued and requiring more sleep.
If you are isolating yourself from activities because they tire you out or are getting harder to do.

Benefits of occupational therapy for survivors

Occupational therapists help people during all stages of disease, from diagnosis through treatment and into survivorship. We help prepare people mentally and physically for what they might experience and we help them maintain as much function as possible, especially during those times when people are at their worst and unable to get up and care for themselves. It’s incredible how quickly our muscles can atrophy when we aren’t moving and doing activities of daily living, like showering and household chores.

Occupational therapy can also help combat cancer-related fatigue, which is different from general fatigue. Read below to learn more about cancer-related fatigue.

As with many rehab therapies, working with an occupational therapist can also help with social isolation. Not only by interacting with the therapist, but also by helping people re-engage with activities like going out to the store or having a meal with friends or family.

Cancer-Related Fatigue

Cancer-related fatigue, or cancer fatigue, is the most commonly experienced symptom of cancer, chemotherapy, and radiation. It is different from general fatigue that is experienced by individuals who do not have cancer or another rare disease. Cancer fatigue is unrelenting and does not resolve with rest or a good night's sleep, and it can greatly impact someone's ability to function and their quality of life.

Typically, cancer fatigue comes on suddenly but not as a result of activity or exertion. You can work with an occupational therapist to learn different practices and techniques to manage your energy so you can do the things most meaningful to you.

What is the difference between occupational therapy and physical therapy?

Occupational therapy focuses mostly on building up strength and endurance of the upper body while physical therapists work on building strength and endurance of the lower body. Occupational therapists also work on fine motor coordination, memory, concentration and fatigue management/energy conservation. Our profession helps to prioritize what is most important to the individual and blending that with what the individual needs to be able to do to care for themselves.

For example, if someone is really passionate about being able to cook their own meals and struggling with endurance and hand strength we would look for ways to increase endurance and modify approaches to chopping and stirring.

Additionally, we help people with the activities we all have to do to take care of ourselves. Examples of these activities could be toileting, bathing, dressing and eating. For these activities, it may include modifying the task, using adaptive equipment to be more independent or safe, building strength and increasing endurance.

Occupational therapy assessments

The assessment is very dependent on the developmental age of the person and what we would expect them to be able to do with their underlying condition. So our assessment for a six year old would look very different for a six year old, to a 35 year old, to a 95 year old.

In general an assessment will look at the person’s ability to independently perform activities of their daily life. This could include:

Bathing/showering
Eating and drinking
Climbing stairs
Doing laundry
Running errands
Preparing meals
Taking care of children or other loved ones
Performing work responsibilities (physical and cognitive functions)