Cancer-Related Fatigue: Syndrome Not Symptom

Fatigue is the symptom most frequently reported by individuals with cancer. However, cancer-related fatigue (CRF) is very different from daily fatigue. Listen in as Alicia and Lizette from The Leukemia & Lymphoma Society (LLS) speak with retired medical social worker and oncology social work leader, Patrice Al-Shatti, MSW, LMSW. Patrice developed the first patient education materials, assessments, and programming on the topic of Cancer-Related Fatigue Syndrome for Mayo Clinic. She shares how calling cancer-related fatigue a symptom does it a disservice as it is actually considered a syndrome. She explains the difference between fatigue and cancer-related fatigue, the varying physiological and biological factors, and helpful strategies known to improve quality of life. Patrice also discusses energy conservation and activity management and how to actively pace, plan, prioritize and deal with ‘energy leaks’.

Mentioned in this episode:

  • Download or order our free publication about cancer-related fatigue by visiting www.LLS.org/booklets and selecting ‘Support’ under the ‘Filter by Topic’ option.

Episode in Spanish


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20 Comments

  1. Great podcast. While my sleep habits are good and I do discuss fatigue and quality of life issues with my doctor, everything else was spot on. I’ve become quite concerned about muscle loss, weight loss, etc., and couldn’t imagine exercising. I believe the fatigue affects my ability to be a safe driver, so I don’t go out in the evenings — even when someone else volunteers to drive. I plan to change that, and look into the PT assessment, while beginning a super easy walking regimen. Thank you!!

  2. I am so grateful for this podcast. I am a sufferer of chronic fatigue who took several naps daily and had stopped exercising because I couldn’t complete my usual routines. You have given me the motivation I needed to change those bad habits. (I didn’t even know that they were bad habits) Thank you again for this timely talk. Your suggestions will definitely be put into use.

  3. Thanks for this podcast! I wish doctors, oncologists, hematologists and our primary doctors will be made aware of this reality for us cancer patients. I’m having muscle loss in my legs and my doctor said there’s nothing I can do about it as it is bound to happen…I was speechless!

  4. Thank you for recognizing fatigue as a common feature in cancer treatment! My doctor doesn’t seem to think fatigue is normal. He offered me an antidepressant. But I’m not depressed, just tired. Great suggestions for dealing with it. Thanks.

    1. Hi Victor, cancer-related fatigue (CRF) is so important to address. CRF interferes with mood and outlook, ability to fulfill daily responsibilities, and enjoyment of life. We are thrilled to hear that you found the suggestions on this episode to be useful. Thank you for listening!

  5. Chronic Fatigue has become a real issue lately when I mention it to my MDAnderson Dr she just adds to her notes with no suggestions.
    I’ll bring this up again and tell her about this podcast.
    Thank you for speaking on this

    1. Hi Anita, we’re happy to hear that this episode has motivated you to bring up this topic again with your doctor. It’s very important to have this conversation and to feel heard. We’d also recommend calling one of our Information Specialists @ (800) 955-4572, Monday to Friday, 9 a.m. to 9 p.m. ET and ask about our free publication about cancer-related fatigue. Thank you for listening!

  6. Thanks so much for this info. I was stunned to read your PDF on this – and related to it 100%. My care providers including oncologist and oncology nurse as well as primary care are CLUELESS about this. Everytime I bring the fatigue up my team says “well you had a really powerful medicine” but never provide any help. My primary care said I was in “perfect health” at a team metting. Wow!

    I have a disability hearing coming up and plan to talk about CRS. I already had CF going into the lymphoma and the CRS on top is debillating. Your handout explained EXACTLY what has been going on with me — a lightbulb. I do have all the symptoms. The problem is getting a doctor to say I have this. I have been in therapy for a year for depression. Lost quality of life. I had chemo July 2016 and am still exhausted. What has helped was focusing on nutrients. Made a big difference.

    Your paper on physical therapy was very helpful as well but I was prescribed that for scioliosis and not for CRS!

    Thanks so much for doing this research. So appreciated!

    1. Hi Colleen, thank you so much for listening. We are pleased to hear that you found our resources to be helpful. Regular exercise, good nutrition, psychological support, stress management and other lifestyle changes can help boost energy levels and the ability to cope with fatigue. We are happy to hear that nutrition made a big difference for you. The Leukemia & Lymphoma Society offers a free one-on-one consultation with a registered dietitian with expertise in oncology nutrition. For more information, you can call one of our Information Specialists at 800-955-4572, Monday to Friday, 9 a.m. to 9 p.m. ET or email infocenter@lls.org.

  7. Thank you so much for this information. I’m on my 4th year with CLL. I’m starting to have symptoms, not sleeping well or not at all. Sudden weakness it comes and goes, where ever I am I just do some positive self talk telling myself I can finish shopping or I can drive home. Its so good to hear I’m not alone and this is actually a part of this diagnosis.

    1. Hi Dee, thank you so much for listening. We are happy to hear that you are able to get through those moments of fatigue with positive self talk. You are certainly not alone in feeling this way. Patrice shared great steps that patients can take to ease their fatigue. Sending you our best!

  8. This podcast is invaluable. I recognized myself in many of the comments and now I think I may have a way out of my own personal inertia. I think this podcast would be extremely valuable to any cancer patient dealing with fatigue. Thank you so much.

  9. Patrice Al-Shatti its great to hear that somebody see’s that us cancer patients are having real issues after the treatments which are causing CRF. I had 4 failed chemo treatments(different) and finally had to go and get a Stem Cell Transplant Knock on wood!!! Its 2.5 yrs since my transplant and I’ve complained to my JHH doctors and to my KP Oncologist and they both seem to say its due to all the stress in my life. A6 months after my Transplant I had to be the care giver daily for my Dad for 2 years. Now He’s passed away and I still have family stress etc but I still feel tired and feel a swirlyness in my head. The only thing that seems to help is to work out in my basement. It’s a battle each day to push myself to do it! But later in the day I start to feel normal again. I wish I could feel normal from the time I wake up. Anything else I can check or do?

    1. Hi Andy,

      Thanks so much for listening to The Bloodline with LLS. Cancer-related fatigue is indeed a real concern for cancer patients. I would suggest reading our Cancer-Related Fatigue Facts Sheet that is available online for free at http://www.LLS.org/booklets. If you have any other questions about LLS resources, please contact an LLS Information Specialist at (800) 955-4572, Monday to Friday, 9 a.m. to 9 p.m. ET.

      Thank you! We wish you well.

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