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Survivorship Series: Cancer Related Fatigue

annekatzby Anne Katz, PhD, RN 

This Monthly Survivorship Series, written by CKN Survivorship Editor, Anne Katz, is provided by CKN with permission from ONS.  We hope this series will become a useful resource that will help to facilitate dialogue between cancer patients, their loved ones and their physicians with a view towards improving the quality of life for cancer survivors.  

Most of us can relate to what it feels like to be tired … some of us are nurses, others physicians and many of us work (or have worked) the night shift. Some of us are female and have been preg­nant and remem­ber the exhaus­tion of that first trimester fol­lowed 36 weeks later by the weeks and months of car­ing for a new baby.

Can­cer sur­vivors know the over­whelm­ing fatigue — phys­i­cal and men­tal — that accom­pa­nies treat­ment and that may per­sist long after treat­ment is over. Radi­a­tion is the num­ber one cul­prit that causes fatigue and the lin­ger­ing of this side effect often comes as a sur­prise; peo­ple often assume that once treat­ment is over, the side effects just disappear.

Some strate­gies that have been shown to improve sleep are: avoid­ing late after­noon or long naps; lim­it­ing time in bed to actual sleep­ing and not watch­ing TV in bed before sleep; going to bed only when sleepy; set­ting a con­sis­tent time for going to sleep and wak­ing up; avoid­ing caf­feine, sodas and other stim­u­lants in the evening; and estab­lish­ing a pre-​​sleep rou­tine that is used con­sis­tently. This is com­monly called sleep hygiene and is a way to avoid sleep med­ica­tion that can be addictive.

Exer­cise has been empir­i­cally shown to help with cancer-​​related fatigue and while there is less evi­dence for inter­ven­tions such as mas­sage, ther­a­peu­tic touch and relax­ation exer­cises, these may be help­ful as well. While it sounds counter-​​intuitive to exer­cise when you are exhausted, reg­u­lar mod­er­ate exer­cise has been shown to increase energy lev­els and improve over­all well being.

How do you pre­pare your patients for the inevitable fatigue from radi­a­tion ther­apy? What sug­ges­tions do you make to help them with this side effect of treat­ment? Please share your prac­tice expe­ri­ence with read­ers of this blog so that we can all improve the care of our patients.

Exercise and Physical Activity as Treatment for Cancer Related Fatigue

Cancer Related Fatigue

 

Depression & Anxiety

anxietyWhy do I feel this bad when I should be feeling better?

by Anne Katz PhD, RN

It is well established that depression is a common experience for those with cancer. Depression rates among survivors are two to five times greater than the general population; it has been suggested that as many as 38% of cancer survivors experience depression [Boyajian 2010]. Survivors experiencing depression may experience poorer quality of life than non-depressed survivors as well as higher rates of cancer progression and even death [Pirl, 2009]. Anxiety is also acknowledged as a significant problem and is often associated specifically with fear of recurrence that can persist for years after diagnosis (Glaser et al., 2013).

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Survivorship Series: Communication Confusion

annekatzby Anne Katz, PhD, RN 

This Monthly Survivorship Series, written by CKN Survivorship Editor, Anne Katz, is provided by CKN with permission from ONS.  We hope this series will become a useful resource that will help to facilitate dialogue between cancer patients, their loved ones and their physicians with a view towards improving the quality of life for cancer survivors.  

Last week I saw a patient who was really con­fused about her treat­ment which was com­pleted at the begin­ning of the year. She has a rather nasty can­cer and I am sure that at the time of diag­no­sis she was in shock and prob­a­bly more than a lit­tle ter­ri­fied. Her surgery fol­lowed pretty quickly after the diag­no­sis and now 4 months later, she is really unclear about what was removed dur­ing surgery, and what remains.

The issue of com­mu­ni­ca­tion within the con­text of can­cer treat­ment and sur­vivor­ship is one that is near and dear to my heart — every day I spend hours com­mu­ni­cat­ing to patients and I am never 100% sure of what they heard and took in and under­stand. I KNOW what I tell patients (I do it over and over) but I don’t know what they hear. And what they under­stand is so impor­tant to their lives.

Now I am not alone in this pro­vi­sion of infor­ma­tion and edu­ca­tion. My physi­cian and nurs­ing col­leagues are also telling them things. We know that after a per­son hears the words “you have can­cer” they hear about 10% of what comes next. That’s a scary num­ber because we all know that a lot of infor­ma­tion is given after they hear those words. Hope­fully it is repeated again and again in the days, weeks and months fol­low­ing diag­no­sis. And hope­fully once treat­ment is over, the per­son is less trau­ma­tized and is bet­ter able to hear what we have to say.

But I’m not sure. And that makes me uncomfortable.

We pro­vide our patients with a raft of sup­port­ing writ­ten and multi-​​media infor­ma­tion. But do they read any of that or watch the DVDs? I know some patients do because they refer to it or call to ask for fur­ther clar­i­fi­ca­tion.  But not every­one calls.  So those who have ques­tions I know about — but what about the others?

I think about this a lot as I go about my day. How do you deal with this com­mu­ni­ca­tion confusion?

 

Survivorship Series: Sexuality = A Survivorship Issue

annekatzby Anne Katz, PhD, RN 

This Monthly Survivorship Series, written by CKN Survivorship Editor, Anne Katz, is provided by CKN with permission from ONS.  We hope this series will become a useful resource that will help to facilitate dialogue between cancer patients, their loved ones and their physicians with a view towards improving the quality of life for cancer survivors.  

 

I am a certified-sex­u­al­ity coun­selor at a large can­cer cen­ter in Winnipeg, Manitoba. Peo­ple I meet (who are not oncol­ogy care providers) often ask if it is dif­fi­cult to work with peo­ple with can­cer. “It must be so sad,” they say. “How do you han­dle it when your patients die?” As oth­ers: “You must be so brave…”

Huh?

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Survivorship Series: Decision Making

annekatz

by Anne Katz, PhD, RN 

This Monthly Survivorship Series, written by CKN Survivorship Editor, Anne Katz, is provided by CKN with permission from ONS.  We hope this series will become a useful resource that will help to facilitate dialogue between cancer patients, their loved ones and their physicians with a view towards improving the quality of life for cancer survivors.  

I par­tic­i­pated as a guest blog­ger for a Cana­dian breast can­cer web­site called Shar­ing Strength, writ­ing about breast can­cer and sex­u­al­ity. Every now and then a breast can­cer sur­vivor posted a ques­tion or com­ment to the web­site. One week a woman wrote a poignant entry about how much she misses her nip­ples and how she wishes some one had told her what it would be like to live with­out them.

This got me to think­ing about how dif­fi­cult it is to think about what comes after the three words “You have can­cer” and how choices that are made will affect you for the rest of your life. Now there is good news in that: 12 mil­lion can­cer sur­vivors are liv­ing proof of life after can­cer. But in the imme­di­acy of that threat to life, most peo­ple don’t think about how qual­ity of life will be altered after treat­ment, they just think about surviving.

Part of my posi­tion at Can­cer­Care Man­i­toba is help­ing men newly diag­nosed with prostate can­cer make a deci­sion about treat­ment. So I know on a pro­fes­sional level how those men and their partners/​spouses often strug­gle to weigh the pros and cons of the dif­fer­ent treat­ment options. And I fol­low those men after treat­ment and see how they face the qual­ity of life issues in the weeks, months and years after suc­cess­ful treat­ment. Most men are will­ing to trade any­thing (erec­tions, con­ti­nence) for life. But liv­ing with those side effects of treat­ment, and liv­ing for many years, is a chal­lenge for many. Not infre­quently I hear a man say “If I truly under­stood what it meant to never have an erec­tion again, I would have….” and I recall the time when that same man rushed into surgery because he was so afraid of the cancer.

The conversations I have had, particularly with their partners/spouses prompted me to write my book, Prostate Cancer and the Man You Love: Supporting and Caring for Your Partner (Rowman & Littlefield, 2012).

I am not sure that as human beings we can really weigh the pros and cons of treat­ment options. I think that in the after­math of those life chang­ing words, we will do any­thing to make it through treat­ment and just LIVE.

 

Survivorship Series: Back to Work

annekatzBy Anne Katz, PhD, RN

This Monthly Survivorship Series, written by CKN Survivorship Editor, Anne Katz, is provided by CKN with permission from ONS.  We hope this series will become a useful resource that will help to facilitate dialogue between cancer patients, their loved ones and their physicians with a view towards improving the quality of life for cancer survivors.  

Some time after treat­ment, can­cer sur­vivors are faced with the need or desire to go back to work. Of the 12 mil­lion can­cer sur­vivors in the United States today, an esti­mated 4 mil­lion of those are adults who were employed at the time of their diag­no­sis and return to work after treat­ment; some may even have worked through­out treatment.

Con­tin­u­ing to work is impor­tant for many rea­sons, includ­ing finan­cial need, self-​​esteem, and social sup­port. Return­ing to work means that one has got­ten through treat­ment. But many can­cer sur­vivors have to work to retain health insur­ance cov­er­age. On the other hand, a life-​​altering diag­no­sis can also prompt a reeval­u­a­tion of pri­or­i­ties; some peo­ple may choose to leave a job they do not enjoy and seek more sat­is­fy­ing employ­ment or take early retirement.

It is not all smooth sail­ing, how­ever. Dis­crim­i­na­tion, both sub­tle and overt, may occur. Employ­ers may assume that some­one with can­cer is no longer capa­ble of car­ry­ing out their work as well as they did before. Can­cer sur­vivors have reported being dis­missed, passed over for pro­mo­tion, denied ben­e­fits, and expe­ri­enced hos­til­ity in the work place. All of these con­tra­vene the 1990 Amer­i­cans With Dis­abil­i­ties Act (ADA). Because can­cer is regarded as a dis­ease that impairs or lim­its a major life activ­ity, those with the dis­ease are included under this pro­tec­tion. Some courts have iden­ti­fied a weak­ness in the act: if a per­son with can­cer is well enough to work, then they are not con­sid­ered dis­abled. In addi­tion, there is not blan­ket cov­er­age with this act and whether an employee is cov­ered is decided on a case-​​by-​​case basis.

Can­cer sur­vivors who return to work may need cer­tain aspects of their job or the work­place mod­i­fied to enable them to carry out their duties. They may be pro­tected by the ADA, but only if there are more than 15 employ­ees in the work­place. Sim­i­larly, they may be pro­tected under the Fam­ily and Med­ical Leave Act (FMLA) that allows for 12 weeks of unpaid leave in a 12 month period, and the employee must be allowed to return to their same or equiv­a­lent posi­tion after the leave.

Going back to work requires advanced plan­ning and, at min­i­mum, a dis­cus­sion with the imme­di­ate super­vi­sor about any mod­i­fi­ca­tions that need to be made. What is to be shared with cowork­ers about any mod­i­fi­ca­tion is also a consideration.

Do you talk to your patients about this? Who do you refer them to for help and advice? These are impor­tant issues to dis­cuss with our patients — and I’m not sure we do this well at all.

Related:  Cancer and Careers