Vermont Cancer Survivor Network

The latest information from the Vermont Department of Health indicates 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.

Researchers at the University of Vermont and cancer survivors have just 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.

Cancer Caregivers
Are you taking care of a loved one with cancer? You are not alone. More than 1.3 million cases of cancer are diagnosed each year. Studies suggest that at least 50 percent of those diagnosed with cancer will be cared for by someone in their immediate family.

Who are the cancer caregivers?
82 percent are female
71 percent are married
61 percent have been providing care for less than six months
54 percent live with the patient for whom they are caring
47 percent are more than 50 years old
36 percent reported caregiving took more than 40 hours of time per week

As a cancer caregiver, you spend your days preparing meals, cleaning, providing transportation, talking to health care providers, administering medication, and making sure their loved one gets everything they need. Cancer caregivers find the time to do it all…everything but take care of themselves.

The Journal of Family Nursing study detailed the impact of providing care on cancer caregivers’ physical, emotional, and financial health. The results are staggering, and indicate that the caregiver needs to take care of his or herself.

Physical
70 percent reported taking between 1 and 10 medications per day
62 percent said their own health had suffered as a result of caregiving
25 percent reported having significant physical limitations of their own

Emotional
85 percent reported that they resented having to provide care
70 percent said their families were not working well together
54 percent visited friends and family less since assuming their caregiving role
35 percent said they were overwhelmed by their caregiving role
97 percent said their roles were important
81 percent stated that they wanted to provide care and could not live with themselves if they did not assume caregiving responsibilities

Financial
46 percent reported inadequate financial resources
Caregivers frequently missed as many workdays as those patients for whom they were caring, according to a survey conducted by the Fatigue Coalition (a multidisciplinary group of medical practitioners, researchers and Patient advocates).

The Benefits of Caregiver Support Systems
Evidence shows that education and support for caregivers may help relieve the stresses associated with providing care for a loved one with cancer. In fact, caregivers who participated in, and evaluated the University of Pennsylvania program, reported significant increases in the degree to which they felt informed about and confident in their ability to provide care.
If you are a caregiver of a loved one with cancer, be sure to care for yourself. You are too important to suffer stress-related illness.
(From the University of Pennsylvania Family Caregiver Cancer Education Program)

Where to find support
Check with your doctor or clinic to see if local support for caregivers is available. If not, CancerCare offers free support programs for caregivers. Their professional oncology social workers specialize in caregivers’ concerns. They can talk to you one-on-one or you can join one of their free support groups for caregivers. CancerCare is currently offering the following groups:
Online Support Groups for:
            General Caregivers/Loved Ones
            Lung Cancer Caregivers
            Young Adult (Ages 20-40) Caregivers
            Pancreatic Cancer Caregivers
            Parents of a Child with Cancer
            Teen with a Parent with Cancer
Telephone Support Groups for:
             Caregivers
             Pancreatic Cancer Caregivers
             Parents of Children with Cancer

For more information, call: 1-800-813-4673, or visit: Cancercare.org.  

I picked this article up at a recent national conference on cancer survivorship. It’s attributed to A.M Thrash, MD from Seale, Alabama and addresses the role of attitude in surviving cancer.  See how many fit your experience.Characteristics of Cancer Survivors Physicians have observed certain characteristics commonly present in people who survive cancer. Look for the recurrence of the principles of hope, joy, cheerfulness and diligence in what is listed. 1.  They had a high expectation of favorable results.
2.  Many had dealt with illness before and had experience in coping with
     ill health.
3.  They exercised moderatley and did not overdo it.
4.  After treatment ended, they wanted to share their experience and
     hope with others.
5.  They understood there are no absolutes in diagnosis.  Everyone is
     different.
6.  They sought alternative treatments when traditional medicine was not
     working.
7.  They took charge of their healing and felt responsible for their own
     health.
8.  They protected themselves from negative influences
9.  They were patient in their expectations, dealing with both the good
     news and the bad news.
10. They were open to examining their options and searching for 
      something that would work for them.
11. They had a willingness to change their attitudes.
12. They educated themselves in prevention and treatment.
13. They avoided added stress.
14. They stopped destructive lifestyles.
15. Most changed to a healthier diet.
16. They had something to look for. Many changed their vocations and
      life interests.
17. They realized they were not alone and developed positive
      relationships.
18. They showed compassion for others.
19. They maintained their sense of humor.
20. They developed an inward calm and took control of decisions that
      affected their lives.
21. They had the support of families and/or friends.
22. Many turned to creative endeavors for healing benefits.
23. Some used food supplements.
24. All were fighters - “active patients” - asking questions, searching 
     for answers, not passive.
25. Many sought God or a higher spirit for healing.