Over the past few months, I have been working as a health coach in a program for Adolescent and Young Adults (AYAs) with chronic illness, including AYA cancer patients and survivors. My job has been to help them work through limitations imposed by their illnesses, as they try to reach important goals they have set out for themselves. After a few weeks of coaching, I and the other coaches I work with, noticed a trend: every single one of the patients being coached through the program felt uncertain or confused about how to communicate with their health care providers (HCPs). This made them frustrated or nervous on more than one occasion, and those communication struggles often left them feeling like they did not have full control over their care.
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.
“Some types of screening are a good idea — colorectal, for example,” said the lead author, Dr. Karsten Juhl Jorgensen, deputy director of the Nordic Cochrane Center. “But breast cancer has a biology that doesn’t lend itself to screening. Healthy women get a breast cancer diagnosis, and this has serious psychological consequences and well-known physical harms from unnecessary treatment. We’re really doing more harm than good.” The New York Times The Downside of Breast Cancer Screening
After reading the above NYT article, we wanted to explore both sides of the Breast Cancer Screening debate so we invited professionals and patients to weigh in with their opinions. We believe patients should be informed before making health care decisions and that includes reading evidence-based research reports as well as hearing personal narratives from patients who have gone through similar experiences.
Our intention with this series is to inform our readers about the facts surrounding breast cancer screening and the implications toward informed decision making.
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
I find it difficult to put into words what the month of September means to me. Truly difficult on several levels actually. There is a part of me that actually does not look forward to the month. It is a thirty-day period in which so many people across the country and the world – having heard the words “your child has cancer” or being moved to action for the cause of childhood cancer – focus an incalculable amount of energy. It is a time that is reserved for childhood cancer advocates to stand on an elevated stage of awareness aimed at generating greater focus for the number one cause of death by disease in children in the United States. It is a time when those who have been unwillingly drafted into the cause and those who have willingly decided that they should “do something” about childhood cancer seek to have gold emblazoned upon the collective conscious of a world that is plagued by so many worthy causes. September is a month that allows those of us in this fight to galvanize and showcase our pain and anguish in a concentrated fashion for children with cancer.
by Maya Stern, Living with Cancer, CKN Advisory Board Member
I was three when I learned how to absorb pain like a bike’s shocks absorb jumps. I was sitting in the phlebotomy lab, clutching my fluffy pink teddy bear. I cringed as the tourniquet pinched my skin. I have always found that part to be more painful than the actual penetration of my skin.