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The Oncologist, the Patient and CKN — Sharing Knowledge

Educational materials about immuno-oncology treatment for people with cancer

LydiaMakaroffby Lydia Makaroff, Director of the European Cancer Patient Coalition

 

Today’s cancer treatments are becoming increasingly complex. While the idea behind surgery is relatively simple – cut out the tumour – many of the new cancer treatments are based on more complex strategies. The complexity of these approaches can leave some people with cancer feeling left behind – as if everyone in the hospital room understands their treatment except them. This can often mean that people with cancer are not able to act as equal and informed partners in their health care.

 

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Welcome to My Reality: by Childhood Cancer Survivor Danielle

DanielleCloakeyby Danielle Cloakey, Childhood Cancer Survivor and Advocate

 

Imagine for a second that what tried to kill you as a child still runs rampant today, wreaking havoc and destroying lives. Can you see it? Welcome to my reality. I am not arguing that cancer is not a monster, because it is. It crept into my life a few months after my first birthday, and its greedy fingers have not yet let go even today, 34 years later.

 

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Clinical Oncologists Lead the Movement to Improve Cancer Care for LGBT People

LizMargolies2by Liz Margolies, LCSW, Founder/Executive Director National LGBT Cancer Network

 

Lesbian, gay, bisexual and transgender (LGBT) cancer patients (and those who love them) experience extra challenges after diagnosis and continuing many years post treatment. There is research to show that LGBT cancer survivors report lower satisfaction with their cancer care than heterosexual survivors and these differences extend to their quality of life following treatment.  Lesbian and bisexual cancer survivors are over twice as likely to report fair or poor health post treatment, compared to heterosexual female survivors. Gay, bisexual and transgender men have more psychological distress after surviving cancer than their heterosexual and cisgender peers. These studies are published but not well known, reflecting the invisibility of LGBT people within the healthcare system.  Last week, a huge change occurred in LGBT visibility and a professional commitment to address these health disparities: the American Society of Clinical Oncologists (ASCO) released a position paper, calling out the impact of discrimination on LGBT people in society and within the healthcare system. More important than simply listing the additional difficulties LGBT cancer survivors face, the position paper recommends multiple actions that will correct the problems, with a focus on those that oncologists can take the lead in bringing about.  ASCO Issues Recommendations for Reducing Cancer Disparities among Sexual and Gender Minority Populations

 

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Navigating the road less travelled….by most

MarjorieMcGibbonby Marjorie McGibbon, RN BScN, Paediatric Oncology Patient Navigator

 

Seventeen years ago, I decided to make a career change and become a pediatric registered nurse. I invited my boyfriend (now husband) to my apartment and proclaimed that “I needed to talk.”  He looked at me skeptically, knowing that those words could potentially be ominous.  “Don’t look so serious,” I said. “I just want to change my career, not my love life!”   He chuckled out a sigh of relief.  But when I asked him seriously what he thought of my idea to switch from a long term goal of athletic therapy into pediatric nursing he simply looked at me and said, “Of course you should do it.  You’d be a natural!”

 

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MATCH Study: Breaking the clinical trials mold

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The MATCH Study: Mindfulness And Tai chi for Cancer Health. This innovative clinical trial conducted by the University of Calgary/Tom Baker Cancer Centre and the Princess Margaret Cancer Centre is now recruiting cancer survivors! As a participant you get to choose which treatment approach you want, or let us assign you to a group if you are equally interested in both. We will measure program effects on psychological, physical and biological outcomes including quality of life, mood, stress, balance, blood pressure, heart rate, immune function and more! Visit www.thematchstudy.ca for more details.

 

 

by Dr. Linda E. Carlson, Study Principal Investigator

 

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The Valley of Echoes: Bridging the Communication Gap Between Patients, Patient Advocates, Researchers and Clinicians

jonathanaginSMALLby Jonathan Agin, CKN Section Editor

 

Recently I had the honor of speaking at the FACTOR Osteosarcoma Conference in Miami, FL, put on by the nonprofit MIB Agents.  This was the first osteosarcoma conference of its type.  For two days, sitting in an ornate and impressively handcrafted room at the Biltmore Hotel in Coral Gables, FL, 150+ researchers, clinicians, parents, patients and advocates breathed in the same air.  Throughout the conference, there were medical presentations involving surgical intervention, limb salvage, drug discovery, drug development, trial design, genetics, patient advocacy and much more.  The agenda was amazingly and stressfully jam-packed.  The purpose of the two day meeting was to bring stakeholders together in one room and discuss priorities for the osteosarcoma community.  The talk I gave was affectionately titled, “Guilty as Charged: Opportunities from Miami and Beyond.”  I was guilty of providing Ann Graham, from MIB Agents, and Theresa Beech, an osteosarcoma parent herself and a childhood cancer community outlier (think Malcolm Gladwell’s book Outliers), with the thought that if they wanted to see change for the osteosarcoma community, then they should think about having a conference.  And thus, welcome to Miami circa February 2017.

 

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