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Tag Archives: survivorship

10 Things not to say to a Cancer Survivor

I first met Drew at Stupid Cancer’s 2014 OMG Summit in Vegas and then again at various conferences over the following four years. I was struck by his intense curiosity and willingness to learn everything he possibly could about the AYA cancer community, in which he included not only survivors, but caregivers too. Over the years we have often chatted about the ever-evolving language surrounding the experience of cancer, and the joys and challenges of communicating within it. As a pithy way of sharing those conversations with a wider readership, I have asked Drew to create a Top 10 List: What Not to Say To Someone Living With Cancer. Have at it, Drew!

 – Pat Taylor, CKN Editor

 

 

drewbologniniby Drew Bolognini, Caregiver/Advocate/Videographer/Editor

 

To begin with, let’s get one thing straight: I’’ve been as guilty as the next guy of saying the wrong thing at the wrong time. I still make mistakes. We all do, but I believe we mean well, really. I hope this list will make us all smarter.  Well, the rest of you readers anyway. I’m not sure anything can be done about me.

 

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Unmentionables

unmentionables

by Anne Katz PhD, RN, CKN Survivorship Section Editor

 

I work in the Manitoba Prostate Centre where we see men with both benign and malignant prostate disease. Many of these men are elderly and often they leave a lingering odor behind them in the waiting room and examination room. Urology nurses are used to these odors and my nursing colleagues often raise their eyebrows at me when I wrinkle my nose in response. I am not judging the patient; it is not their fault that they have this problem. It is a side effect of treatment compounded by the fact that they don’t launder their clothes frequently or perhaps their families have gotten used to the smell or perhaps they don’t know how to address it without feeling shame and embarrassment. A recent article in the Journal of Cancer Survivorship Research and Practice (Alsadius et al., 2013) highlights this issue. The men in this study had radiation therapy for prostate cancer between 2 and 14 years previously.  A testament to the importance of this issue is the response rate – 89% – from men over the age of 80 years.

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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

 

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

 

 

PYNK Program: Cancer is beyond “just staying alive”

windingpath“Compared with their older counterparts, young women with breast cancer often have greater and more complex supportive care needs. The present article describes the goals, achievements, and future plans of a specialized interdisciplinary program—the first of its kind in Canada—for women 40 years of age and younger newly diagnosed with breast cancer. The program was created to optimize the complex clinical care and support needs of this population, to promote research specifically targeting issues unique to young women, and to educate the public and health care professionals about early detection of breast cancer in young women and about the special needs of those women after their diagnosis.”  Read the full article in Current Oncology here.

 


Claudia Grieco shares her personal experience with the PYNK Program.

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