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Could have Told You that: Cancer Fatigue Real

News Flash: Cancer Fatigue Is Real

A few days before my recent birthday, I saw a headline for a new research study which announced, “Breast Cancer Fatigue Is Real.”  While I’m always glad to see more research into the causes of this pernicious scourge, my first reaction was to think, ‘Well, no shit. I could have told them that.’ My second was to look up the actual study results in the journal that published it, but since I don’t have a subscription to Psychoneuroendocrinology (I know. A shocking oversight on my part.), I could only read the abstract and not the entire article.  And my third thought was to continue to be amazed and appalled that there are still so many cancer survivors out there who don’t know that post-treatment, cancer-related fatigue (CRF) is, in fact, real, and who are not getting any or enough help for it.

Not only have I been on this bus since my seventh radiation treatment 2-1/2 years ago, I’ve been thrown under it, and have spent far more time than I care to tally trying to crawl away from it and leave it behind.  Two days ago, I celebrated my third birthday since my cancer diagnosis.  The good news is that I have actually begun to experience a few odd moments of feeling like my old self again.  The bad news is that it still doesn’t take much to throw me right back under the bus.

Do Not Disturb — Nap In Progress

Spring may at last be in the air, but it’s been a long winter.  Like many other folks, I survived a month of fighting off some very stubborn respiratory infections.  That was February.  Shortly thereafter, I spent a day subjecting my already-tired back to the strain of sitting in really lousy chairs during a series of visits to my patients, the result of which was that I couldn’t stand up straight at the end of the day.  Because I’m a physical therapist, I managed to follow my own advice and recover.  That was March.  Which brings us to April, and being slammed at work — and believe me, I’m always grateful that I can work at all and have a job to work at — along with attempting to have a little fun, get a little more exercise, tidy up the house, and enjoy myself.  You know, like a normal person.  Silly me.  For my sins, I’ve paid for all this by once again experiencing that familiar drag-ass quicksand, intent on sucking me down once more.

I’m not going to talk about diet, supplements, exercise, stress reduction, and all the other bromides that those who don’t really know what this is like always trot out when the fatigue discussion comes up. I do all that, okay?  The thing about cancer-related fatigue that distinguishes it from regular tiredness is that all that stuff doesn’t work sometimes.  And that you have to get out of the fatigue muck in the first place before you can even to engage in some of these helpful behaviors. It finally occurred to me that perhaps I need to take my fatigue-fighting drugs again.  So, after toughing it out without them since the first of the year, on the day before my birthday, I searched through my collection of prescription bottles and tried one of them, namely my generic Adderall, which is a drug containing amphetamine salts.  Didn’t really work.  I wasn’t as hungry as I usually am, but I still had to take a nap.  The next day, my birthday, I popped the other drug, Provigil, went off to work, and felt marvelous!  Like, normal!!   Happy Birthday to me!

Some people respond well to Ritalin, another stimulant better known for helping people with Attention Deficit Disorder.  When I tried it, it made me feel worse, not better, but that's just me.   Another medication I found helpful was Wellbutrin, an older antidepressant that helps the brain stockpile dopamine and norepinephrine.  It was recommended to me by a psychiatrist who works with cancer survivors.  It was necessary to take a higher dose than one would normally take for depression or smoking cessation, but it did help for several months.  I found that the effectiveness of whatever I took seemed to wear off after a while, but I was able to switch to one of the other medications when that happened.

Okay. So, it’s real. So what?

Back to Fagudes et al and their research.  What this latest study evaluated was the “relationships between fatigue and both sympathetic and parasympathetic nervous system activity in breast cancer survivors.  Norepinephrine and heart rate variability (HRV) were evaluated at rest, as well as during and after a standardized laboratory [...] stressor.”  What they found was that breast cancer survivors who suffered from fatigue responded to stress by producing higher than normal levels of norepinephrine, the neurotransmitter that we use for the “fight or flight” response, and lower than normal heart rate variability, or HRV, which is a measurement of our heart beat that indicates our recovery from stress.  All of this is related to the responses of the sympathetic and parasympathetic nervous systems, which have been shown to be thrown out of balance in people with Post-Traumatic Stress Disorder, as well as cancer patients who suffer from long-term fatigue after treatment.  Norepinephrine is a component of the sympathetic nervous system, which allows us to gear up to deal with stress or trauma. HRV indicates how well our parasympathic nervous system is responding, which is the system that is responsible for allowing us to rest up after dealing with stress or trauma.  In people who are not suffering from PTSD or CRF, these two systems remain in balance overall.  What the study showed is that, in women with breast cancer fatigue, the sympathetic nervous system remains in a state of over-reactivity, while the parasympethic nervous system wears out and is unable to help conserve and restore our energy. In other words, our bodies go into fight mode, and can’t seem to come out of it.

All cancer patients are vulnerable to CRF.  But many cancer-related fatigue studies in recent years have focused on breast cancer patients.  There may be many reasons for this, but surely one of them is that, unfortunately, there are a lot of us around.  But I also think that perhaps we get hit with it so often because breast cancer is one of the more notoriously recurrent forms of cancer.  But one thing that all cancer patients share is that, no matter how many negative scans and test results we may get after our initial treatment is over, we are always looking over our shoulder.  It’s no wonder that our immune systems become convinced that they have to stay in fight mode, ever prepared for that next test that may tell us that the Beast has returned or metastisized.

Oy.  The study didn’t say how we’re supposed to deal with this, except to include a caveat about keeping a vigilant eye on our overall health.  Yeah, thanks for that.  Tell me something I didn’t know. The sad and even shocking thing about this subject is how many cancer doctors don't seem to know that long-term cancer-related fatigue is a real condition, meriting attention, thorough assessment and treatment.  Primary care physicians, who are often the ones who deal with follow-up care for cancer patients after acute treatment is done, also need to learn how to help patients with CRF. 

The National Cancer Institute provides a thorough, and recently updated, PDQ on Fatigue, which outlines the steps that physicians need to take to recognise and evaluate it.  The National Comprehensive Cancer Network, with research done by the Fatigue Coalition, was able to outline and get evaluation criteria for CRF included in the revised ICD-10, the medical coding book that healthcare clinicians must use in order to be reimbursed for diagnosing and treating medical problems.  The good news is that, up until this latest revision, there wasn't even a way to code for a diagnosis of CRF.   Now there is.  The bad news is that the evaluation criteria that have been included are already ten years old, may be a bit too rigorous or inaccurate, and might unwittingly exclude patients who have been struggling with and adapting to CRF for several months or years after cancer treatment.  I was unable to find a separate and distinct code for CRF, but it appears that clinicians may use the old code for fatigue, which is 780.79, as long as they use the criteria to assess its occurrence in their cancer patients.  In the November/December 2006 issue of the Journal of Supportive Oncology, prior to the publication of ICD-10, Dr. Joanna M Brell outlined some of the difficulties inherent in evaluating CRF, along with the reasons why physicians need to continue to treat and research CRF more effectively.  A link to a PDF of her commentary is here.

If you find yourself being a treated by a doctor who "doesn't believe in" CRF or doesn't offer to help you, you may want to print out some of the above information and bring it with you to your next office visit.   Or find another doctor who is more sympathetic.   For me, it was my PCP who listened to me when my cancer doctors didn't.  

It's crucial for you and your doctor to bear in mind that you can be doing everything right -- eating well, getting a lot of exercise, managing your stress, getting your cancer check-ups, and so forth -- and still find yourself falling under the bus.  That is the nature of this hellish beast, CRF.   I've done everything but stand on my head, and sometimes, it just doesn't help.   In the meantime, I’m tired of the fight, and I’m tired of being tired. So, I’m taking the drugs. Again.

You may find these previous blog posts helpful in providing more information about cancer-related fatigue:
Losing It…And Trying To Get It Back
Fatigue Redux: Not Really Rosie…Yet
There May Be Whining…
The ‘F’ Word


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