18 Mar More than just being Tired
Cancer-related fatigue is the most prevalent symptom of cancer patients at diagnosis, during treatment, and potentially for years post-treatment. Let’s understand more about what it is and why you should be discussing it with your care team.
What is Cancer-Related Fatigue?
The National Comprehensive Cancer Network (NCCN) defines cancer related fatigue (CRF) as: ‘a distressing, persistent, subjective sense of tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning. This type of fatigue is often described by patients as much different than what they had experienced in their daily lives before cancer. It often comes on suddenly without warning, and it takes a longer time to recover OR you are unable to recover well. For example, this would be like taking a nap for your fatigue, BUT not feeling better after taking your nap. It negatively effects the quality of life (QOL) of patients and their families.
While yes, there are many different aspects of living with cancer, on treatment, and/or post cancer that can cause fatigue…for example: medications, cancer treatments, anemia, etc. Of course, these fatigue causing issues or side effects must always first be addressed with your oncology provider team. However, why does it feel like even if all of these are all taken care of, that the fatigue still lingers….often fatigue is the lasting side-effect that can take months to years to recover from and that hopefully will go away, but also may never really go away. You may find that a trip to the grocery store or attending a friends birthday party may be all that you are able to handle for that day.
How do I talk to others about it?
It is important to validate this symptom not only with yourself and your family/friend caregivers, but also with your oncology team. YOU are the team captain of how you are feeling and its important to share that with your team
You can rate your fatigue like you rate pain; on a scale from 0 (no pain) – 10 (most pain you have ever felt). It is also beneficial to document your fatigue, maybe just a quick end of the day diary note of how fatigued you felt, what gave you energy (a nice walk or visit with friends) and what may have taken it away (work, not sleeping well, fears of cancer recurrence). There are also many words to describe fatigue: exhausted, debilitating, “chemo brain,” annoying, frustrating, and so on. It’s very beneficial to recognize these feelings to understand how you might be also able to take control in helping fight your fatigue.
Talking about how you are feeling and sharing what you can about your cancer fatigue with people in your life is a great start. It can help others understand more about it and find ways they can help with daily chores, be a walking buddy or be a listening ear.
Remember, some days are harder than others and it’s not something they will know unless you speak up and share. When you are fatigued during the day, try to take a small break, even just a couple minutes to take a few deep breaths (relaxation exercises) or getting up to walk for a few minutes can help give you
Can I experience cancer-related fatigue even if I’m not going through treatment?
YES. Research studies suggest that fatigue may persist for months to years following treatment in up to one-third of cancer survivors. While cancer-related fatigue may be most common during treatment or if you have active disease, more recently screening has become a very important focus during the cancer follow-up period or survivorship. Expert groups like the American Society of Clinical Oncology (ASCO) and NCCN endorse these fatigue screening guidlines at least annually in survivorship. Continued fatigue can be quite common, but fortunately there are ways you can better manage it and learn to achieve a better energy balance.
What can I do about my cancer-related fatigue?
After, you discuss with your oncology team about your fatigue, review what treatment options may be available. Often times, treatment for fatigue can be individualized and tailored to your specific needs. Research has shown that prescription medications aren’t the very best for treating fatigue with the exception of very specific treatment related circumstances. What research does show that alternative and supportive therapies are very helpful with fighting fatigue. These include (but are not limited to): mindfulness exercises, meditation, yoga, physical exercise, positive reinforcement, education, and nutrition. Also, just trusting yourself and validating that your fatigue is real can have therapeutics benefits.
- Your fatigue is REAL and you are not alone!!
- Be the captain of your care team, you know yourself the best, and discuss your fatigue with your oncology care team
- Start a daily diary that captures your fatigue levels and what gives you energy
- Discuss treatments with your care team before trying them, but give some thought about which ones may be most helpful for you
Lisa Marie Juden, MSN, FNP-BC, RN, is an Oncology Nurse Practitioner originally from Boston, Massachusetts. She has specialized in medical and surgical gynecologic oncology over the past 10 years. She has spent her nursing career at Boston’s Massachusetts General Hospital and Dana Farber Cancer Institute. She now brings her clinical oncology expertise and nursing experience to help the fight against chronic cancer fatigue in the US with the Tired of Cancer team.
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