Vermont Cancer Survivor Network

The latest information from the Vermont Department of Health estimates that there are currently over 33,000 Vermonters alive today who have been diagnosed with cancer. The Vermont Cancer Survivor Network was created by and for cancer survivors in 2006. Our goal is to improve the quality of life for Vermonters living with, through, and beyond cancer. At VCSN, we use the term survivor to refer to individuals living with cancer, from the moment of diagnosis throughout the rest of their life. We also include as survivors those directly affected by cancer, a spouse, a partner, a family member, or a caregiver. Let us know your comments.

We have added a new feature to our website,  Cancer Survivorship Resources by county. To access these pages, click here.

According to the American Society of Clinical Oncology (ASCO), the cost of treating cancer is increasing at a rate of 15 percent per year — nearly three times the rate of increase of overall health care costs in the country. The latest cancer drugs often cost thousands of dollars per month, putting a strain on many families’ finances.

A report issued at a conference sponsored by the American Association for Cancer Research found that even with health insurance, more than one million cancer survivors living in the United States report that they forgo needed medical care because of concerns about cost.

New booklet now available.
ASCO has released a guide to help cancer patients and their doctors communicate more effectively about the costs associated with their treatment and care.

The booklet, available online at www.cancer.net/managingcostofcare, provides a summary of the costs associated with treatment and a list of financial resources for patients who need help paying for their treatment and care.

To use the guide, begin with three elements: First, click on “Understanding the Costs Related to Care” to see descriptions of likely charges; then go to “Glossary of Cost-Related Terms” to make sure you understand the terminology. Finally, click “Questions to Ask About Cost” to see 50 or so questions ranging from care (”If I cannot afford this treatment plan, can we consider other treatment options that don’t cost as much?”) to job issues (”Who can help me understand my . . . legal rights?”).

The patient guide includes a list of cost-related questions that cancer patients can ask their doctors, like how much medication and treatment, office visits, and associated expenses such as transportation, other living expenses and long-term care will cost.

The booklet also contains information on resources for patients who have employment or health insurance problems related to their cancer care; tips for organizing bills and expenses related to care; a list of financial resources available to cancer patients; and a glossary of cancer treatment and financial terms.

Other on-line resources.

You can also get help from CancerCare, a national social service group (www.cancercare.org), 800-813-4673. Other places to find help: use the search engine at the American Cancer Society site, www.cancer.org and key in “health insurance and financial assistance”; or go to the National Cancer Institute at www.cancer.gov. and search for “Financial resources”.  At the ASCO site, www.cancer.net, use the search engine for a massive list of cancer resource groups, listed alphabetically.

Researchers at the University of Vermont have received funding from the National Cancer Institute to develop a cancer survivor registry. The goal of this study is to work with the cancer survivor community in four counties (Franklin, Lamoille, Washington, and Chittenden) to help improve their quality of life.

This study was written by researchers and cancer survivors, and we plan to expand our collaborations throughout this two year study. There are two main aims we want to achieve.

In Aim 1 we will develop an infrastructure to foster communication with and among the Vermont cancer survivor community. As part of aim 1 we will develop a regional population-based multi-purpose cancer survivor registry that will include both long term and short term survivors. Survivors will have the opportunity to participate in the following ways:

• Be invited to participate in a future research study
• Receive educational materials and notices about upcoming cancer survivor events
• Receive or provide social support (and training in how to provide support)
• Suggest ideas for future research

In Aim 2 we will describe the unmet cancer-related needs of cancer survivors in the following areas:

• treatment;
• information and decision support;
• emotional, social and spiritual;
• physical activities and logistics of daily living;
• health and wellness;
• economic and legal;
• navigating service delivery systems

We will describe these needs by the following personal characteristics and history: rural residency, education, income, stage of diagnosis, time since diagnosis, demographics (gender, age), types of treatment (radiation therapy, surgery, chemotherapy), and health insurance. We hypothesize that rural residency, low income and education, older and younger age, shorter time since diagnosis and diagnosis of late-stage disease will each have significant independent effects on the unmet survivorship needs.

In addition we will create an environment that engages the community in the research process and agenda. We will develop tools to enable us to continually learn from the process of community participation and report on our lessons learned. We believe that our project will be stronger from our partnership with survivors and that our research is more likely to be successful because of community participation.

If you are interested in learning more about this study or would like to participate in some way please contact:

Anne Dorwaldt
656-4114
anne.dorwaldt@uvm.edu

Berta Geller
656-4115
berta.geller@uvm.edu

Ellen Fein
223-6196
cancercoachvt@comcast.net

March Update

Invitations have been sent out to survivors in Franklin, Lamoille and Chittenden Counties and returns have been coming in to UVM.  The Washington County mailing is scheduled for later in March.  Teams of volunteer cancer survivors are working to spread the word in each community.

We are pleased to announce the pilot program for a  peer-to-peer support program for cancer survivors, call KINDRED CONNECTIONS.

For more information, click here.