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.

An extraordinary line-up of actors, musicians, athletes and journalists have banded together for Stand Up To Cancer (www.standup2cancer.org) the ground breaking initiative aimed at raising funds to accelerate cancer research and bring new therapies to patients more quickly in order to end cancer’s reign as a leading cause of death.

Harnessing the power and influence of the media, many of the world’s most renowned entertainers have pledged their full support for a nationally-televised one hour program, simultaneously broadcast live and commercial-free on ABC, CBS and NBC on September 5, 2008 at 8pm EST. In addition, the Hollywood community has embraced Stand Up To Cancer by supporting a host of creative projects across a wide array of platforms in an effort to ignite passion in the American people so they realize that significant advances in cancer treatment are within reach.

Stand Up To Cancer is a program of the Entertainment Industry Foundation (EIF), a major force in the fight against cancer which, since its inception over 65 years ago, has raised more than $300 million for cancer research and prevention. EIF is a 501(c)(3) charitable organization. Contributions to Stand Up To Cancer are tax deductible.

For more information please visit: www.standup2cancer.org

Researchers at the University of Vermont and cancer survivors 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

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

For more information, click here.

Many cancer survivors have said that they have felt overwhelmed by the amount of information available at the time of their diagnosis. There dozens (if not hundreds) of books, brochures and web sites for just about every known cancer.  Type “breast cancer” in Google and you receive over 609 million selections!

The VCSN’s 2006 Vermont Cancer Survivor Focus Group Study found that the majority of participants described a profound and ongoing desire for information. As was found in national surveys, survivors said their primary source of information was their doctor

The Study reports that there was a sense that if people went out looking for information and knew where to look and whom to ask, they generally found what they were seeking regarding diagnosis and treatment options. People who were most successful were often those who had someone else to do the research and interpret the information for them, i.e., a friend or family member, particularly early on.

A concern brought up in the Study was that finding clear and accurate information about issues other than diagnosis and treatment was more problematic, and many participants spoke of the distress they experienced as a result of not having been given information by their health care providers. Areas where participants reported being given inadequate or no information included the side effects of treatment; residual effects; nutrition; depression and anxiety, particularly at the end of treatment; and living life as a cancer survivor. A number of participants were uninformed or misinformed about benefit programs and insurance options that could have helped them.

In addition, participants noted that while information about breast and prostate cancer is abundant, information about other cancers, particularly less common cancers, is much less available. Younger participants noted the difficulty of finding information relevant to younger adults.

So where can Vermonters go for information when they need it beyond another visit to the clinic?  The Internet is a popular source for information, but can quickly become overwhelming. How do you know what you are reading is accurate? Also, many Vermonters do not have easy access to the internet.

As the slogan goes, the next best thing to being there is the telephone. The American Cancer Society has developed a Cancer Resource Network (1-800-ACS-2345) with extensive research into local and national programs and information. Trained facilitators answer the line, 24 hours a day, and will spend as much time as needed to help answer your questions. They will send you free information about to your needs.

Another resource is the Cancer Information Service, (1-800-4CANCER) sponsored by the National Cancer Institute. Trained operators can help you find national information on cancer treatment and survivorship issues. They will also send you free information.

More patient-specific is the CANCERCare Hotline (1-800-813-HOPE). In addition to providing printed information, CANCERCare also offers a series of Telephone Education Workshops (see the VTAAC Calendar at http://www.vtaac.org ). Learn more on issues that affect you by listening in on these toll-free calls. They also offer telephone support groups, which have helped many survivors who live too far away to attend hospital-sponsored groups.

The National Center for Complementary and Alternative Medicine’s Clearinghouse (1-888-644-6226) provides information on CAM , including publications and searches of Federal databases of scientific and medical literature. The Clearinghouse does not provide medical advice, treatment recommendations, or referrals to practitioners. Complementary medicine is used together with conventional medicine. Alternative medicine is used in place of conventional medicine.

If you live in the Washington County or Orleans County areas, you may wish to become involved with VCSN’s “Kindred Connections” program. This program connects survivors with trained volunteers for personal conversation. Email us info@vcsn.net for information.

There’s plenty of information out there and it’s as easy as making a phone call to find it. Be sure to check our Links page for more on-line and telephone information.