Our Patient Navigators can provide more information on side effects like fatigue.
Fatigue is one of the most common side effects of cancer treatment. It is an extreme feeling of tiredness or lack of energy not caused by a specific activity, and it usually decreases after cancer treatment ends. However, some people may still feel fatigued for months or even years after treatment. In a survey initiated by the Chordoma Foundation in 2020, 59 percent of chordoma patients and survivors reported experiencing fatigue since being treated.
If you experience fatigue and do not have a plan for managing it, talk with the doctors and nurses treating your chordoma or your primary care physician to get the process started. When seeking ways to manage fatigue, it is important to:
The Chordoma Foundation is a resource for anyone affected by chordoma, at any stage of your journey. We're here to help you understand the disease, its side effects, find qualified doctors, and connect with others in the chordoma community.
Our Patient Navigators can provide more information on side effects like fatigue.
Fatigue related to cancer is different from the fatigue that healthy people feel. When a healthy person is tired from certain activities or at the end of the day, their fatigue can be relieved by sleep and rest. Cancer-related fatigue is less predictable and is not entirely relieved by sleep and rest. It can be:
Cancer-related fatigue is:
Cancer-related fatigue can:
Patients and survivors describe cancer-related fatigue as feeling tired and weak, being worn-out, heavy, or slow, being unable to fully recover your energy after an activity, or having no energy at all. In some cases, physical fatigue — and the limitations it causes — can lead to mental fatigue and mood changes.
Getting help with fatigue may prevent or relieve some of these problems and improve your quality of life.
It is worth noting that while weakness is a term often used to describe fatigue, they are actually two different sensations. Fatigue is a feeling of tiredness or exhaustion due to lack of energy, whereas weakness is a feeling of decreased physical strength.
The two are closely related and weakness can contribute to fatigue, but it is important to know exactly what you mean when you say “I feel weak” or “I am fatigued” because it can help you and your doctor narrow down the possible causes and treatments.
The causes of cancer-related fatigue can be challenging to determine because there are often many factors involved. The causes of your fatigue may be completely different from those of someone else. Not everyone who has chordoma experiences fatigue, but if you do, the level of cancer fatigue you experience can vary — you may feel a mild lack of energy or be completely exhausted.
How cancer and related treatments cause fatigue is not well understood, but possible contributing factors include:
Fatigue is also common in people with advanced disease even if they are not receiving any type of treatment because the body is dealing with a greater amount of cancer.
Your fatigue can differ from one day to the next. You may feel it in different ways, it may be better or worse, or it can bother you less or more. Common signs of fatigue you might experience include:
Some fatigue during and just after chordoma treatment is to be expected. But if you find that your fatigue is interfering with your ability to go about everyday tasks or it isn’t going away — lasting weeks, months, or even years — you should discuss it with your care team so they can help you.
There is no specific test to diagnose fatigue, and no labs or scans can show the level of your fatigue or its impact on your life. The best measure of fatigue comes from the way you describe it. You can describe your fatigue by giving examples of how bad it is, how it affects your daily activities, and what makes it better or worse.
A first-hand report of your fatigue ensures that your experiences and needs are clear to your care team so they can help you find relief. In some cases, family member accounts of your fatigue can also be useful.
Ask your doctor or nurse the best way to describe your fatigue so they can understand how it affects your everyday life. For example, you can describe your level of fatigue as none, mild, moderate, or severe. Or you can use a scale of 0 to 10 — as suggested by the National Comprehensive Cancer Network — where 0 means no fatigue at all, and 10 means the worst fatigue you can imagine.
If you report a moderate (4 to 6 on the 0 to 10 scale) to severe (7 to 10 on the 0 to 10 scale) level of fatigue, your care provider may ask you more descriptive questions, such as:
Additionally, your doctor will need a complete list of all prescription and over-the-counter medications, vitamins, and supplements you are currently taking. Certain medications and supplements can cause fatigue as well as affect both the levels of hormones in your body and the tests used to detect any imbalances in those hormones.
These could be a sign of a more serious issue.
Your doctor may do some or all of the following to help accurately assess the fatigue you are experiencing, understand its impact on your quality of life, and identify any causes of your fatigue that can be treated.
Physical exam. This is an exam of the body to check general signs of health such as temperature, blood pressure, heart rate, breathing, muscle tone or weakness, posture, and joint movements.
Answering questions or completing a questionnaire. You may be asked about the medications you are taking, your eating and sleeping habits, how the fatigue affects your daily lifestyle and ability to participate in work or school, whether you’re experiencing depression, anxiety, or pain, and how long your fatigue has lasted.
Rating your level of fatigue. Your doctor may also ask you to rate your fatigue on a numeric scale — from 0 to 10 — or by degree of severity (based on how much it impacts your daily life).
Blood tests to check for anemia and hormonal imbalances. The most common blood test to check for anemia is a complete blood count (CBC) with differential. The CBC looks for the number of red blood cells and platelets, the number of white blood cells, and the amount of hemoglobin in your blood. Hormones like cortisol, prolactin, TSH (thyroid), estrogen, and testosterone are also detected through blood tests. Those with clival or cervical tumors should have these tests done on a regular basis, but it can be helpful to check your levels of these hormones no matter where your tumor is or was located.
A good way to track and report your fatigue is to keep an activity log. An activity log is a list of your activities, the time you do them and for how long, and how you feel during and after them. Keeping an activity log can also help you notice any patterns to your fatigue. For example, are you more tired in the afternoon or the evening? Do you feel more exhausted while performing a specific daily task, such as emptying the dishwasher? Or is it worse after the task?
This information will help your healthcare provider assess your fatigue in order to provide you with suggestions for managing it.
Although there is no way to know if you will experience fatigue, how bad it will be, or how long it will last, there are a number of ways to help manage it if it occurs.
Treat underlying conditions or causes:
Exercise or yoga: Research studies have shown that physical activity during and after cancer treatment can decrease fatigue. Light exercise like walking, stationary bike, yoga, or swimming may help you feel better and have more physical and mental energy. Your healthcare team can refer you to exercise or rehabilitation specialists to help you establish a safe exercise plan that is tailored to your needs.
Physical and occupational therapy: Physical therapists (PTs) and occupational therapists (OTs) are healthcare professionals who can help you manage your fatigue. PTs help improve your ability to move by helping you build strength and balance. They can also help you come up with an exercise plan that works for you. OTs help improve the skills you need for important everyday activities such as getting dressed, taking a shower, or cooking a meal. Both PTs and OTs can help you stay motivated and set goals.
Massage therapy: Massage therapy has helped some individuals undergoing cancer treatment reduce stress levels and improve sleep, which can improve fatigue. Talk to your doctor before starting massage therapy.
Behavioral counseling: Therapists and counselors help people with cancer explore how they think, feel, and react to certain things. Anxiety, fear, depression, hopelessness, or lack of social support can make fatigue worse. Behavioral therapy or mindfulness-based stress reduction can give you ways to cope. Complementary therapies, such as relaxation techniques, may also help.
Nutritional counseling: Nutritional deficits can add to the problems of fatigue and weakness. Your doctor may refer you to a dietitian to check your calorie and nutritional intake. You may also be prescribed vitamins or supplemental electrolytes (such as sodium, potassium, calcium, iron, or magnesium) to help reduce your symptoms. Discuss these with your doctor or dietician to help you know what and how much to take.
Stay socially active: Stay connected to family and friends, but make sure to pace yourself. There are many ways you can keep in touch with your friends and family, including spending time with them in person, talking on the phone or through a video chat, or sending emails and text messages.
Stick to a routine: Changes in your daily routine can cause the body to use more energy. A regular routine can help you manage your activity levels so you have more consistent energy throughout the day. It can improve the quality of your sleep as well.
Because the symptoms of fatigue are usually caused by more than one problem, it is likely that you will need to interact with more than one care provider to address them. Your care team for fatigue-related issues may include doctors, nurses, counselors, physical therapists, endocrinologists, pharmacists, dietitians, nutritionists, or others.
It is sometimes possible to schedule visits with specialists at the center where you were treated for chordoma. For instance, if you see your chordoma team in-person for follow-up visits, ask for referrals to other specialists in the medical center and make appointments to see the specialists while you are there for follow-up. You can then ask the specialist to consult with a specialist local to you so they can plan and follow your treatment together.
If you can’t be seen by a specialist at the center where you were treated, ask your chordoma care team for referrals in your local area. Some chordoma doctors will do consultations with local specialists, even if you haven’t seen them in person.
Seek out specialists at your nearest academic medical center. These specialists will likely not have experience with chordoma, and that’s okay. You and your chordoma care team can help educate them on chordoma and your experiences with it.
Palliative care is an important part of cancer care. Sometimes called supportive care, it is recommended for all cancer patients from the time of diagnosis, through all stages of treatment, and after treatment is complete. It can address symptoms of the disease itself or side effects of its treatment.
Chordoma experts recommend that all chordoma patients’ treatment plans and survivorship care plans include palliative care. No matter what treatment you have for chordoma, palliative care can help address pain, mobility and functional issues, mental and emotional health, nutrition, fatigue, and many other concerns to help you feel well and live fully while managing your chordoma.
To help you find specialists to address the many quality of life needs that may arise following treatment, we created a Survivorship Specialist Directory within Chordoma Connections, our online community. It is a supplement to our Doctor Directory, an invaluable tool on our website you can use to locate surgeons, radiation oncologists, and medical oncologists who have extensive experience treating chordoma.
The Survivorship Specialist Directory allows chordoma community members to share information with one another about providers who have been helpful in addressing quality of life concerns, including pain specialists, palliative medicine providers, physical therapists, and more.
Many of the care providers who can help you manage pain won’t know a lot about chordoma. And that’s okay. We developed a fact sheet you can use to help your doctors and other healthcare providers learn about chordoma. It includes general information on chordoma, how it’s treated, and the common side effects of those treatments. There is also space for you to add information about your particular situation so your providers can understand how chordoma has affected you personally.
If you are caring for someone with chordoma who is experiencing fatigue, there are a number of things to keep in mind and ways you can support them.
This content was developed by the Chordoma Foundation in consultation with members of our Patient Services Committee. It is not meant to take the place of medical advice. You should always talk with your doctors about treatment options and decisions.
We would like to thank the members of our Patient Services Committee for providing their expertise in contributing to the content and review of this information:
Edward Les, MD, Chair, Yen-Lin Chen, MD, Karen Cox, RN, FACHE, FAAN, Al Ferreira, RN, Sasha Knowlton, MD, and Paula Song, PhD
The information provided herein is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your or your child’s physician about any questions you have regarding your or your loved one’s medical care. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.