Heather fatigue

Everyone experiences exhaustion at some point or another. However, the type of tiredness experienced by someone without cancer is incredibly different than the type of tiredness experienced by a cancer survivor. In fact, saying “I’m tired” could even be an understatement. We touched base with Dr. Kuiper, Dr. Bram Kuiper is a clinical psychologist, scientific
entrepreneur and CEO of Tired of Cancer. Up until July 2017, Bram was the CEO of the Helen Dowling Institute for psycho-oncology and research a specialist in the field of cancer-related fatigue, to give us some background about what cancer-related fatigue is, and what you need to know about it.

1. What is cancer-related fatigue?

The definition given by the National Comprehensive Cancer Network (NCCN) explains it best. It reads: Cancer-Related Fatigue (CRF) is “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.“CRF is far more than just being tired. The impact of cancer fatigue affects many aspects of a patient’s quality of life, including their physical, psychological, and social well-being. It can also limit their ability to function, socialize, and participate in activities they once enjoyed.

2. How is cancer-related fatigue different than “regular” fatigue?

Cancer-related fatigue, compared to normal fatigue, is fatigue that suddenly occurs, almost out of the blue. It feels like exhaustion and is, therefore, worse than normal fatigue and has a longer recovery time. It is not something that goes away with a cup of coffee or a few extra hours of sleep. Patients describe feeling suddenly “wiped out like an empty battery.” We also hear that it is difficult to explain to others. As one patient said “I can’t explain it, words fail me. Someone who hasn’t experienced this fatigue cannot understand.

3. Is it common for a colon or rectal cancer patient to experience cancer-related fatigue?

Cancer fatigue continues to be the most prevalent side effect of cancer and cancer treatment. For those recently diagnosed and undergoing treatment, approximately 80-90% experience fatigue. Even after treatment has ended, sometimes years later, it is estimated that 30-40% of cancer patients and survivors still suffer from it. Fatigue is also a common symptom in patients with colorectal cancer (CRC), particularly in those undergoing treatment (46% of patients experienced moderate to severe fatigue during treatment, while fatigue persisted in 27% of survivors).

4. How do I know if I have cancer-related fatigue

Fatigue can happen at varying points in the cancer journey. Cancer fatigue cannot be measured objectively, it is a subjective feeling. There is no blood test or scan for it. Only the person involved can understand how tired he or she is. However, similar to pain, fatigue can be described through a ranking scale from 0-10 whereby 0 is not tired at all and 10 is severely tired. Internationally it has been agreed that a score between 0 and 4 indicates that one is mildly fatigued, between 4 and 7 moderately fatigued, and between 7 and 10 severely fatigued. Almost every cancer patient is moderately to very fatigued during the first year after the diagnosis. Prolonged fatigue, and by this we mean many years, occurs in 30 to 40% of all cancer patients and survivors.

5. What treatments make cancer-related fatigue more severe

Treatments like chemotherapy induce fatigue, as it does in treatments of other cancer types. During chemotherapy, 59% of all CRC patients suffer from fatigue according to the study below. Approximately 39% of CRC survivors (up to 10 years post diagnosis) still reported fatigue compared 22% of the normative population.

6. Is there research going on to better understand how to manage cancer-related fatigue? Yes, more research is taking place in the U.S. and internationally to better understand cancer-related fatigue, its impact, and how to better manage it. There are many different studies looking at fatigue within a variety of different cancers and cancer stages. There are a few that are specific to colorectal cancer. Research continues to show the positive impact non-pharmacologic interventions like exercise has on cancer-related fatigue and patient quality of life. Through research, we can better understand and identify more ways to reduce cancer-related fatigue in hopes of improving the quality of life and reducing the fatigue burden for all cancer patients.

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16 comments on “Cancer-Related Fatigue Part 1: What is Cancer-Related Fatigue?”

  1. 1
    Anne Botsford on July 12, 2019

    I am 4+ years post NED after 5 years of chemo, radiation, surgery for Stage 4 colorectal cancer. At the beginning of treatment, I was told that my chances of surviving for 5 years was 5%. Don’t let the numbers get you down. I have LARS, too, but now, almost five years later, it has improved to the point where I rarely have fecal incontinence. A nutritionist diagnosed lactose-intolerance also, which I previously did not have. Lactaid helped significantly to reduce this cause of incontinence.From my experience, I think that time for recovery from surgery may be an important fsctor; for example, it’s been almost five years since my surgery, after which I despaired of ever being fecally continent again. What I hoped was “progress” was often one step forward and two steps back, with seemingly unpredictable lapses, “accidents,” and a sense of endless, lost days in bathrooms. I never found a diet that helped, though I experimented with no meat, no grains, no beans, lots of fiber, little fiber, no fruit, just fruit, and combinations of all of those or none. I also completed a bowel therapy program, from which I learned about how bowels function and how to strengthen them, but without much longterm improvement. I do believe that Kombucha, which I only started drinking three months ago has been helpful for me. Please keep in mind that I don’t know of anyone else who has made this claim, I know of no studies about it, and I was more than 4 years post-NED when I tried it. In other words, I’m not making any recommendations, only reporting my experience. Maybe if I had tried it earlier in my recovery, it would not have made any difference at all. See what I mean: it’s not guaranteed to help a particular person, at a particular point in their recovery, or perhaps at all. But like an enema for a broken arm, it can’t hurt, at least as far as I know!

    About fatigue: Wiped out, like never before in my life. I tried to do one thing a day in the beginning: Make my bed. Of course, I might not be out of it for more than an hour, but I did feel that I had accomplished something, one thing, that day: I made my bed. Over the coming days and months, I tried to string together other accomplishments: take a shower, get dressed, go downstairs once a day, come back up the stairs, put my clothes in the laundry bag, throw the bag down the stairs, drag it to the washing machine the next day, fill in a calendar of when to pay my bills, etc. Bottom line: Accept total exhaustion at any time and go back to bed.

    It’s been almost five years now. If I seem to be repeating that, it’s because I still harbor fears that despite all the improvement I’ve experienced, everything could change. This morning I went swimming for an hour in an outdoor pool near my house. It’s the middle of July and the sunshine dappled the water as I swam. I’m swimming again, I am making it, I am recovering, I am alive. It’s taken time, with setbacks and frustrations, to reach this point. But I’m alive and well in these moments. This is what we all hope for. I wish it for you, too.

  2. 2
    Jacquen Allen on July 10, 2019

    I’ve had colon cancer for 2 years.At first I was so tired then I lost some weight. Oh and I got the hiccups for about a week.ive have I ‘ve had the real aggressive chemo then I’ve had the radiation beads .I had my gallbladder removed as well as half of my diaphragm. I’m not on any chemo no I’m tale n oral pill calle stivarga. I’m do n real good on it .no side effects .I feel normal now .I just hate that I have to think about when my body is tired of fight n .so scared. But like I said I can do anything I run lift weights walk eat good .im 255 lbs .and I am 48 years old I have a wife and 4 year old son .having cancer makes you think about what you can do to help someone else get a colonoscopy dont wait!!!!.prey to god all the time .its 2019 and I’m do n good .If any one would like to talk and there journey i can be reached at 8594105889 or mayflowerman06@ gmail.com.

    1. 3
      Luz Ayda Garcés Sánchez on August 1, 2019

      hello Jacquen
      Thanks for your comments. I would like to know how long have you been taking stivarga?
      Which side effects do you have?
      My mom has CCR stage Iv and she is taking the same pill than you but her side effect is tiredness and a weak voice.

  3. 4
    Jan Byrd on July 5, 2019

    I am 9 years NED. I refer to chemo as the gift that keeps on giving. I sleep but have little stamina. I kept working throughout treatment, but the last 3 treatments were particularly hard. I couldn’t go to work on port removal day. I still have balance difficulties. I also developed neuropathy in my feet so walking any long distance is painful. I am , however, better than I was 9 years ago

  4. 5
    Graham on July 5, 2019

    Does anyone know of a UK specialist who deals with cancer tiredness and the effects on the abiyto function effectively at work?

  5. 6
    Jane Ashley on June 13, 2019

    I am also five years out from a Stage IV rectal cancer diagnosis. Treatmentment ended almost 4 years ago. I am NED. But if I don’t exercise regularly and get 8 solid hours of sleep, I get fatigued. Housework (mopping, sweeping, dusting) wipes me out. And it’s very difficult for me to go to sleep at night – I can’t turn my brain off – and it’s not always worry about recurrence. My brain just continues to think about new projects to do. I have a permanent colostomy, and that is a contributing factor to sleep issues too. Yet, I am eternally grateful to be NED.

    1. 7
      Dania Decosse on July 5, 2019

      I am 4 months past being told that NED. Haven’t had my first scan yet but blood work is beautiful. I have terrible fishers and every bowel movement is excruciating and exhausting. My family of 5, 4 kids from 19-4 and husband think I’m all better and things can be normal again. I’m getting so overwhelmed.

  6. 8
    Tamara Aburto-Pratt on June 12, 2019

    My sister was a Leiomyosarcoma patient and a physician. She described the fatigue (whether on chemo or not) as something that felt cellular, as if someone had uncoupled oxidative phosphorylation (the cellular process that is supposed to produce energy aerobically). Uncoupling of oxidative phosphorylation is also what happens in cyanide poisoning. She said it felt like this only not to the point of death. She fought it all the way as best she could and survived 13 years (in a disease with only a 15% 5-year survival odds). She was my hero.
    I myself (also a physician) came down with stage 4 Ovarian carcinoma 24 years after her diagnosis and now I’m experiencing this. Yes, the fatigue was the worst post surgery and during chemo (which overlapped) but what I feel is that i have no ability to regain conditioning. Even 9 months after chemo ended, I still have fatigue that requires frequent rests, sometimes for 2-3 days after doing even brief moderate activity. I’m still happy with life, but adjustment of expectations was/is a necessity.

  7. 9
    Mirna on June 12, 2019

    Stage IV
    I’m NED for almost 1.5 years now. Stopped chemotherapy a year ago and every now and then I feel tired and my answer was always that the battery went off… I didn’t relate until I read this, now I understand that I’m just normally suffering fatigue… but thank God, he gave me a chance to live again
    God bless you all warriors

  8. 10
    teresa anglim on June 12, 2019

    I am 8 years NED, from stage 3. I wake up tired, push through my morning, nap at noon, and watch the clock until I can reasonably go to bed, normally by 930pm. Chronic fatigue is horrible. My primary is a joke when I am trying to explain “I am just tired all the time”. time to revamp my medical team!

  9. 11
    Stephanie on June 11, 2019

    I am NED stage 1b rectal cancer, had very low tumour, resection and reversal 11 months later. I am 5 years out from diagnosis and still get occasional intense fatigue, without having gone through chemo or radiation.

  10. 12
    Debra on June 11, 2019

    I have been battling colon rectal cancer for the past 5 years. My last round of treatment was last summer: chemo and radiation. Today I will get bouts of fatigue that isn’t just being tired. My Oncologist says it isn’t from past treatments. I don’t agree with that. Anyone out there have fatigue we’ll after treatment has finished?

    1. 13
      Amy on June 11, 2019

      I am two years from my last chemo treatment and I get terrible afternoon fatigue, my oncologist ALSO says it is not due to treatment any more, now it is “just a habit” from being so wiped after chemo… frustrating…

  11. 14
    Robin Simmons on June 11, 2019

    My quality of life is diminished.

    1. 15
      Carla on June 11, 2019


  12. 16
    Robin Simmons on June 11, 2019

    I’m NED stage 3b adenocarcinoma rectal cancer had chemo radiation surgery clean up chemo 6 months radiation and a bladder sling. Have LARS, and continue to have incontinent.

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