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.

In response to the Harris poll finding that almost 79 million people have served as an unpaid cancer caregiver for an immediate family member or close friend, the American Cancer Society has created a special page for caregivers, www.cancer.org/caregivers.

Following are statistics based on a survey done by the University of Pennsylvania Family Caregiver Cancer Education Program:

•         47% of cancer caregivers are older than 50

•         82% are female

•         71% are married

•         54% live with the person for whom they are caring

•         61% have been providing care for less than six months

•         36% reported that caregiving required 40 or more hours per week

Research conducted by the American Cancer Society’s Behavioral Research Center shows:

•         Cancer caregiving is among the most stressful burdens of all caregivers.

•         Cancer caregivers suffer as much psychosocial, physical, and financial stress as those who care for people with dementia, which is generally viewed as the most stress inducing challenge for all caregivers.

•         Cancer caregivers report providing more hours per week of care (31.8) than other caregivers.

•         Much of the cancer caregiver’s day is spent on physical activities, like helping the survivor out of bed, getting him/her dressed, getting him/her to the bathroom, cooking meals, and providing transportation.

•         It is harder for younger caregivers, women, those who have children at home, and those who are caring for more difficult types of cancer.

•         Younger caregivers (aged 54 and younger) report higher levels of stress than older caregivers (aged 55 and older). This is likely due to a number of factors, including relative lack of life experience and higher levels of disruption with their roles in life when the responsibility of providing care is thrust upon them.

•         Caregivers of cancers that are non-gender specific (lung and kidney) report greater stress than caregivers of gender specific cancers (breast, ovarian). Non-gender specific cancers tend to be associated with higher mortality rates and caregivers receive less social support due to lower incidence rates.

•        Cancer caregivers who have children younger than 18 are more likely to report higher levels of stress than those without children.

•     Men handle cancer caregiving differently than women who provide care. They generally report less stress than women, likely because men report getting more help from family members and friends than do female caregivers.

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.

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

Many cancer survivors have said that they have felt overwhelmed by the amount of information available at the time of their diagnosis. There are 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.