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The Caregiver's Perspective

Thursday, March 3, 2016

This week’s blog post is from the Cancer Experience Registry February newsletter. This newsletter focused on the cancer experience from the caregiver’s perspective.

Working to Understand the Full Impact of Stomach Cancer

Thursday, February 4, 2016

The Advisory Board grew silent as one of the caregivers told his story. It was the first meeting of the group the Cancer Support Community brought together to plan the new Stomach Cancer program for the Cancer Experience Registry.

He was young, nice looking, straight forward--but the pain and futility of his beautiful wife’s illness and death from stomach cancer was clear as he spoke. The doctors in the group listened and stressed the urgent need for new therapies to improve the prognosis, but we all came away from that meeting with a deeply increased understanding of the importance of connecting to the community of people impacted by stomach cancer (also known as gastric cancer) -- and giving them a voice.

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!

A Hidden Battle in the Cancer Journey

Wednesday, September 24, 2014

Researchers recommend a new, nurse-led approach to treating depression. This approach combined anti-depressant drugs, problem-solving therapy and encouragement towards physical activity. In a study of 500 patients, this approach led to over 60 percent of participants reporting their depression scores as half of the previous score. Participants also said that they felt less anxiety, fatigue, and pain. Researchers argued that similar programs could vastly improve the quality of life of many individuals diagnosed with cancer.

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.

In recognition of breast cancer awareness month

Wednesday, October 9, 2013

Each year, 1 in 8 U.S. women are diagnosed with breast cancer, and about 1 in 1000 U.S. men are diagnosed. During National Breast Cancer Awareness Month, we want to ensure that everyone touched by cancer knows about all of the programs and services we offer, all free of charge. Additionally, in recognition of this awareness month, the Cancer Support Community is offering both new and ongoing programs and services for those affected specifically by breast cancer.

Giving Back By Sharing Your Voice Through the Cancer Experience Registry

Thursday, July 11, 2013

If sharing your cancer journey could enhance the lives of others, would you help?

I keep hearing that people who have been diagnosed with cancer want to give back. They want to “pay it forward” so that the next person who is diagnosed with their disease will have a better experience than they had. I always think to myself – how selfless! We want to give back to you, too.

There seems to be so much survey research these days. An organization asks you to answer a questionnaire and then you never hear about it again. We wanted the Cancer Experience Registry to be so much more than a survey, so we created something we call Explore Responses where you can do just that – explore the responses of other people who have been diagnosed with cancer.