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Managing Distress Throughout the Cancer Experience: ASCO Cancer Survivorship Symposium 2016

Wednesday, January 20, 2016

When you are first diagnosed with cancer, there might be quite a lot going on in your mind. We also know that the emotions and feelings associated with cancer don’t necessarily go away with time. The Cancer Support Community’s Research and Training Institute presented findings from a new study, at the American Society of Clinical Oncology (ASCO) Survivorship Symposium, which found that well over a third of cancer patients over a year from diagnosis and beyond continue to report moderate to very serious concerns across a range of issues, including feeling worried about the future, finances, sadness and depression.

Hearing the Patient Voice

Tuesday, December 22, 2015

At this year’s American Society of Hematology (ASH) annual meeting, Cancer Support Community’s Joanne Buzaglo presented on findings from the Cancer Experience Registry. The topic was the Multiple Myeloma Patient Experience with Financial Toxicity, a topic of increasing importance to patients who now have multiple (expensive) treatment options and who are living longer.

Elevating the Patient Voice: 3 Things We Learned from Cancer Experience Registry Data

Wednesday, October 22, 2014

Today, the Cancer Support Community is excited to announce that the index report of these findings, Elevating the Patient Voice, is now available online!

What Exactly is a Registry, Anyway?

Wednesday, March 26, 2014

The Cancer Experience Registry serves a vital role in helping researchers better understand the cancer journey, but what exactly is the Cancer Experience Registry?

I’m not SHOUTING – I just want my voice to be heard

Friday, November 15, 2013

You’re used to making decisions. You multi-task while leading others in your job. Suddenly, you’re being told the decisions; you’re excruciatingly tired and weak; you can barely decide what to have for dinner. That was how I felt after my Chronic Myeloid Leukemia (CML) diagnosis in May 2009. And through countless rounds of blood work, doctors’ office waits, cardiograms, scans and the dreaded bone marrow biopsy, the system-focused health care system soon taught me that sometimes, in order for MY voice to be heard, it had to sound loud and confident.

The first year, I was sick with the side effects of my first cancer treatment and from the leukemia itself because the medication didn’t work for me. That year, I didn’t have the energy to make myself heard so just blindly did what I was told. Take this every day, do that, be here at 2 pm, don’t eat grapefruit, wait here, turn on your side, come back in three months. This series of short commands ruled my life. Then somehow, in that fog, I started questioning the commands. That was the first inkling of my voice coming back. Soon after that, we switched to another medicine for my CML treatment.

Making a difference for others with cancer

Thursday, March 21, 2013

A diagnosis of cancer can be devastating and a journey that is unclear to those moving through it. Yet patients who have faced cancer are more than willing to share information about their experience perhaps with the hope that their learning can make it easier for people who are newly diagnosed. Today, the Research and Training Institute of the Cancer Support Community launched a first-of-its-kind Cancer Experience Registry which aims to understand the many facets of the cancer experience through the eyes of those who have experienced it first-hand.

Anyone touched by cancer can join the registry to share their experience, compare their responses to others who have joined and explore resources available to them.