Cancer Survivors Network
This section of the American Cancer Society’s Web site comprises personal stories from cancer survivors that are published in an effort to share resources and offer hope and strength to others. By registering to become a member, which is free-of-charge, you can create your own web space, and populate it with your favorite “expressions”, including poems, photos, audio/video, and blog entries. You can also browse the Member Resource Library, which includes recommended books, events, videos and web sites, and view members’ personal Web pages and blogs to find others facing challenges similar to yours.
If you find a Web page that interests you, you can add that person to your “friends” list, e-mail that person, or add the Web page to your favorites list. Registering also allows you to post messages to the network’s discussion boards and participate in chat groups. There are discussion groups on virtually every type of cancer as well as on issues such as emotional support and cancer in the workplace. Registered users can control access to their personal information, such as their e-mail address, and networks are available in Chinese and Spanish, as well.
Support Groups and Education in Your Community
The American Cancer Society’s Web site provides a list of Society-sponsored resources and programs throughout the United States. A listing of resources, from programs that provide free wigs to patients who have lost their hair as a side effect of their cancer treatment, to workshops on how to cope, are available by entering your zip code or city and state. Along with these helpful resources, community fundraising events are also listed. The “Local Resources” section lists programs specifically for cancer patients and their families. You will also find a link to “Join the Discussion”, which leads you to a virtual community message board, allowing you to exchange questions and stories with other cancer patients online.
Beyond The Cure
Beyond the Cure was created for childhood cancer survivors by The National Children's Cancer Society. This site provides detailed information about the late effects of a cancer diagnosis and treatment involving all aspects of survivors’ lives. You can also use the Late Effects Assessment Tool to analyze late effects specific to your diagnosis and treatment.
Cancer ListServs
The Association of Cancer Online Resources (ACOR) provides information and support to cancer patients and those who care for them through cancer-related Internet mailing lists and Web-based resources. Mailing lists include numerous cancer support groups, language-specific groups, and groups that are focused on a particular cancer.
ACOR hosts about 160 cancer-related Internet mailing lists. There are mailing lists that offer “psychosocial” support to cancer patients, including those experiencing depression related to diagnosis or treatment, fatigue, and fertility issues. This support is offered by patients and patient advocacy groups. There is also a list for caregivers.
Many of the lists have at least 200 subscribers and, therefore, generate a high volume of e-mail every day. You can see how many subscribers are in each list before you subscribe. If you subscribe to any of the lists, you should expect to receive a lot of e-mail. You can opt to receive one large e-mail daily instead of individual e-mails each time a member sends a message to a list.
Cancer Treatment Summaries
Often, medical care is divided among many members of a healthcare team, resulting in poor communication among the various physicians and systems. In order to simplify the communication of complex information, the American Society of Clinical Oncology (ASCO) is developing templates for cancer treatment and summaries. These forms can be downloaded to your computer and printed out for you to take to your oncologist. They provide a convenient way to store information about your type and stage of cancer, the cancer treatment you received, and the expected follow-up care. The treatment plans and summaries should then be placed in your medical chart so that healthcare professionals who subsequently see you will have a good summary of all treatments given to date. ASCO has developed adjuvant and survivorship forms specifically for breast and colon cancer, as well as a general cancer adjuvant treatment plan. They are also in the process of developing one designed specifically for lung cancer.
Online Support Groups
CancerCare offers free counseling either individually or through professionally run support groups on a wide range of topics. Both types of counseling are offered online, by phone, or in person (at CancerCare locations in New York, Long Island, New Jersey, and Connecticut). CancerCare social workers can also guide patients and family members to counseling and support groups in their own communities.
A full listing of CancerCare support groups is available on the Web site. Online support groups via message boards are available 24 hours a day, 7 days a week and are moderated by professional oncology social workers. There are support groups for patients, caregivers, and those who have lost a loved one to cancer. These groups are sub-categorized by type of cancer, treatment side effects, age group, survivorship, and relationship to the patient, (e.g., parents, spouses, etc.). Participation in online support groups is free and confidential, but you must register to participate.
What is unique about CancerCare's online support groups is that the social worker facilitating the group maintains regular contact with each of its participants. This facilitator will reply to unanswered questions and concerns as needed and offer guidance and resources to the group. Support group participants can also contact their social worker at CancerCare if they need additional support.
Telephone Education Workshops
CancerCare Connect sponsors free Telephone Education Workshops for people living with cancer, their families and caregivers, and healthcare professionals. These workshops are essentially conference calls led by cancer experts that can help you learn about cancer-related issues and treatment from the convenience of home. Workshops are accessible by phone throughout the United States and internationally (no phone charges apply), and the CancerCare Web site provides a month-by-month calendar of upcoming workshops. They are held several times a month from 1:30 PM to 2:30 PM, eastern time, but you must pre-register at least one week in advance. Online registration is available, or you may call CancerCare at 1-800-813-HOPE (4673). You do not need to have access to the Internet to participate in these workshops.
Follow Up Care Planning
Cancer survivorship is on the rise. Unfortunately, some survivors may develop health problems as a result of their treatment. OncoLife is an online tool designed by a team of oncology nurses and physicians from the Abramson Cancer Center of the University of Pennsylvania that generates customized survivorship care plans for survivors of adult cancers. By selecting options according to cancer type and treatments received, the program produces a summary of possible medical side effects, such as secondary cancers, bone-density loss, liver toxicity, infertility, and cognitive problems. In order to ensure the most accurate report, you will need specific information from your oncology team, for example, areas that were given radiation treatments (called fields), and/or what medications and dosages were received. You can print out the plan out to review and discuss it with your healthcare team. The program was designed using the National Comprehensive Cancer Network Guidelines. Oncolife is also available in Spanish.
Gilda's Club
Gilda’s Club provides opportunities for people living with cancer to build social and emotional support networks through support groups, lectures, workshops, and social events in nonresidential, homelike settings called clubhouses. Gilda’s Club currently serves more than 50,000 members in 21 cities with 30 clubhouses across North America. The Gilda’s Club Web site provides information about how to become a member. Membership is free. There is a clickable map of the United States that shows club locations. There is also a Resource Directory that includes a selective number of links to sites that are national or international in scope and contain useful and responsibly written information. Those interested in membership can call 888-GILDA-4-U.
Practical, Emotional, and Physical Issues After Cancer Treatment
The Web site of the Lance Armstrong Foundation's education program, LIVESTRONGTM, provides valuable information about the practical, emotional, and physical issues related to surviving cancer. This site is geared to survivors who have completed active treatment for their particular cancer.
Information on the LIVESTRONGTM Web site site is organized so that you can easily browse through lists of typical practical, emotional, and physical concerns related to cancer survivorship and find information to help you cope with them. Topics in the physical section include: fertility and sexual dysfunction, aftereffects of cancer treatment (such as chronic pain, lymphedema, neuropathy, and cognitive changes) optimal nutrition, physical rehabilitation, and hospice care. Topics in the emotional concerns section include: living with uncertainty, relationships, depression and stress, fear of recurrence, and changes in body image. Finally, employment discrimination, life expectancy concerns, and planning for your medical future are included in the practial effects of cancer section. All information is written by cancer doctors, nurses, or social workers, and each article includes links to more detailed information, helpful suggestions, and additional resources.
The site also offers survivor stories, both in print and on video, and online tools and worksheets to help you prepare for doctor appointments, track medications and treatments, and communicate with your healthcare team. You must register to access this information.
Life After Cancer Care
M.D. Anderson is a National Cancer Institute-designated comprehensive cancer center in Houston, Texas. M.D. Anderson’s Life After Cancer Care program focuses on potential health problems that may arise from cancer or its treatment. Even if you are not receiving medical care at M.D. Anderson, you can find information on the institution’s Web site about follow-up care by cancer type and the long-term complications of cancer treatment.
There are also FAQs about follow-up care, summaries of M.D. Anderson’s cancer survivor studies, a section on long term effects of childhood malignancies, and a section about osteoporosis, a common side effect for survivors of several types of cancer. The site is also available in Spanish.
M.D. Anderson is also parsing the results of a wide-reaching survey of cancer survivors, and has posted reports regarding work issues, quality of life, hearing loss, and cataracts, among other topics, in their What Research Tells Us section. They will be adding to the resources as they continue to gain insight from their survey results.
Follow-Up Care
Understanding what follow-up care involves can help patients and their loved ones plan for the future. The National Cancer Institute’s Web site includes a Q&A on Follow-up Care that is geared to patients who have finished active treatment and are now preparing for the future.
Here you will find information about what follow-up care entails and why it is important. There is also a list of questions to ask your doctor about your follow-up care, such as how often to have routine checkups and what symptoms to watch for. There is information about what medical records you need to keep and a list of online resources that provide follow-up care guidelines for specific cancers.
Life After Cancer Treatment
The National Cancer Institute Web site features helpful resources for cancer survivors and their families as they face the challenges of life after cancer treatment. Here you will find a wealth of information for cancer survivors who have recently completed their cancer treatment.
There is information about:
- Getting Medical Care After Cancer Treatment
- Professional Support Services
- Developing a Wellness Plan
- Your Social and Work Relationships
- How to Manage Physical Changes
There is also a list of questions to ask your doctor to help you develop a follow-up plan, such as how often you need routine checkups and what symptoms to watch for. You will also find information about what medical records you need to keep.
Sexuality and Reproductive Issues
Cancer and its treatment often have an impact on patients’ sexuality, affecting both their sexual desire and, in some cases, sexual function. In some patients, sexual problems may be temporary, while in others their effects can be long-lasting. The National Cancer Institute’s (NCI) Web site provides peer-reviewed summaries of information about the sexual-related side effects of cancer treatment. Here, you will find information about some of the common sexual changes that occur during and after cancer treatment, including surgery, radiation therapy, chemotherapy, and hormone therapy. You can also learn about how sexual problems are assessed and treated in cancer patients, as well as how cancer treatment may affect fertility. These summaries are available in two formats — for patients and for health professionals — and in Spanish. You may want to begin with the patient version, but the version for health professionals is more comprehensive and suited for someone who is familiar with cancer. This version also refers to key citations in the medical literature that link to published medical journal abstracts.
National Coalition for Cancer Survivorship
The National Coalition for Cancer Survivorship (NCCS) is the oldest survivor-led cancer organization in the United States.Patient education is a top priority at NCCS, and their Cancer Survival Toolbox is an excellent place to start. This is a free, self-learning audio program developed by leading cancer organizations to help people develop important skills to better meet and understand the challenges of their illness.
The Toolbox includes ten modules: Communicating, Finding Information, Making Decisions, Solving Problems, Negotiating, Standing Up for Your Rights, Topics for Older Persons, Finding Ways to Pay for Care, Caring for the Caregiver, and Living Beyond Cancer.You can read or listen to the Toolbox in English and Spanish, and Chinese transcripts are also available. Family members and caregivers can also use the Toolbox on behalf of a child or anyone else with cancer.
Under the NCCS Resources section, you will also find information on Health Insurance, employment rights, financial help, clinical trials, caregiving, and end of life.You can also call a toll-free number 1-877-NCCS-YES (622-7937) to request one free hard copy of each of their publications. A small shipping and handling fee is required.
You will also find survivor profiles in their “Community” section. At the bottom of each profile, there is a form that allows you to submit your own story, which they may then feature on their site as well.
NIH Senior Health: Life After Cancer
Visitors to the Web site will learn about managing follow-up care, physical and emotional changes, and relationships with family and friends. The topic also addresses how a person’s age and health status can affect recovery and survival. This is important information for older adults who make up about 60 percent of cancer survivors and whose cancer treatments may have been complicated by other aging-related health conditions.
Insurance Appeals and Employment Discrimination
The Patient Advocate Foundation’s Web site includes Your Guide to the Appeals Process, a guide for patients who are having problems getting their health insurance companies to pay for diagnostic tests, lab work, or treatment. The guide includes sample appeal letters you can personalize to send to your insurance company. Other helpful resources include First My Illness, Now Job Discrimination: Steps to Resolution, a guide designed to empower patients who may be dealing with illness-related job discrimination. The site also has information for patients in need of insurance and debt crisis assistance. You will need Adobe Acrobat Reader to read these publications. If you don’t have this software, you can download it free from the Internet.
Web Casts
You can get the latest information about cancer and cancer-related issues from Memorial Sloan-Kettering Cancer Center's leading doctors without venturing beyond your home. The Memorial Sloan-Kettering Web site includes the CancerSmart Lectures and Educational Program for Survivors Web Casts. These community lectures, meetings and discussions are presented either to the public or to members of MSKCC's Post-Treatment Survivor Program, and were recorded so that you can view them on your computer. The videos play directly in the Web page simply by clicking a button. They are viewable on most operating systems, but if you don't see them, you may need to download the Adobe Flash Player, which is available on the Web free of charge. (Note: the older CancerSmart Web Casts from 2003 and 2004 are currently viewable only with the RealMedia Player, an application which can also be downloaded from the Web free of charge.)
When Treatment Ends
For young adult cancer patients whose treatment has ended, the transition back to school or into a career can be difficult and, in some cases, finances can be a roadblock. The SAMFund provides grants and scholarships to young adult cancer survivors, ages 17 - 35, to help them pursue educational or professional goals and move forward with their lives after cancer. Funds can be used to help pay for education, living expenses, job searches, and medical expenses.
Working Women with Cancer
Many cancer patients continue to work during treatment and others return to work soon after treatment ends. Here, working women with cancer can find information and tools to help them manage their cancer and their careers. The site addresses such issues as how to tell your boss; how to balance work and treatment; what to expect from your employer; and your legal rights. Most sections of the site are also available in Spanish, by clicking the “en espanol” link in the upper right corner of the screen. (Much of the information also will be helpful to working men with cancer.) Employers and coworkers also can find information about how to support an employee with cancer, including ways to implement flexible work arrangements. Caregivers can find information about how to approach an employer about taking a medical leave or a leave of absence.
You can download Living and Working with Cancer, a free booklet that contains medical history charts, insurance logs, questions to ask doctors, and tips on combining work and treatment. This booklet is also available in Spanish. Another booklet The Most Important Resources for Working Women with Cancer, also is available for downloading. It lists the best websites, books, and cancer support services recommended by a panel of cancer survivors, doctors, lawyers, and social workers. You will need Adobe Acrobat Reader to download these booklets. If you don't have the program, you can download it free of charge on the Web.
Young Women with Breast Cancer
This international network of breast cancer survivors is dedicated to the concerns and issues that are unique to young women with breast cancer. Here, you can be connected with other young women affected by breast cancer who have a similar diagnosis. The organization’s Web site also provides Bulletin Boards on a range of topics, including treatment, premature menopause, metastatic disease, and support for family and friends. Most postings also include brief details about the person’s age, diagnosis, and treatment. You must register to access the Bulletin Boards. The site also provides online fact sheets and brochures of particular interest to young women with breast cancer as well as Survivor Stories.
