One of the most isolating, distancing aspects of a cancer diagnosis is a sense of being cut off from the rest of the "normal" world of people who do not have cancer. Suddenly you are different, facing an unknown and frightening future — and you may feel very alone and frightened. The rest of the world roars on, leaving you on the sidelines.

Today, that veil of isolation can be lifted for you in ways that weren't available even ten years ago. The advent of patient support groups, in person and online, throughout the country has helped many people with cancer gain support and strength to cope with the disease. Through support groups, the cancer patient community has gained strength and momentum as people make use of this relatively new resource to interact. Additionally, research has shown that patient support groups definitely improve the quality of life for many people who participate in them.

It's important to know that you are not hurting yourself or your chances for a full recovery if you do not choose to attend or participate in a support group. Support groups are helpful for many patients but are not right for everyone.

Other options. Of course groups are not the only kind of psycho-social support available. Many patients still seek and receive individual psychological counseling and group therapy of various kinds. For families suddenly thrust into the world of caregiving, working as a group with a family counselor to learn new behaviors and techniques of working together can be of great benefit. Still others find a deepened interest in spiritual activity rewarding, providing comfort and companionship.

Support Groups Overview

At their core, support groups work because people who enjoy participating in them find themselves understood and welcomed.

Born from the roots of the 1970s encounter groups and group therapy (long a part of psychological therapy), patient support groups first developed in hospitals. Now, hospitals and cancer centers continue to sponsor them, but these have been joined by an outpouring of groups managed by national advocacy organizations for cancer and a host of other illnesses and conditions, including caregiving and family support. Special groups abound for children and teens, as well.

Many national cancer organizations also offer valuable services like online support groups, telephone counseling, and patient-to-patient conversation and counseling. Please see the section on Support Groups in the NCCS Resource Guide for a comprehensive listing of support offered by national organizations.

Many of today's support groups are online, in the form of listservs (discussion lists) and chat rooms where people “signed on” can communicate online at any time of the day or night.

What they do. In general, support groups, moderated or unmoderated, online or face-to-face, offer:

• Information
• Emotional support
• A place to learn
• Coping skills
• An opportunity to share personal experiences
• A means to reduce anxiety and fear
• An opportunity to improve quality of life

Why support groups work. While there are many individual reasons people find value in support groups of different kinds, these seem to be the core reasons:

• Support groups allow a participant to both give and receive. It's a way to contribute as well as be given to — and this can be a welcome relief in a time where a person feels dependent on others much of the time.
  
  
• Groups can be an excellent source of information, especially detailed information, about care and other issues that too often don't get addressed in the doctor's office or a clinic visit, where the pressure of time dominates much of what happens. Despite fears that advice and information from non-medical personnel will prove inaccurate, many support groups have found that people offering information tend to be well-informed and relatively reliable. Moderated or facilitated groups often have the ability to correct inaccurate or misleading information. Check with your health care team about information you receive in a support group, to be sure it's correct and complete.
  
  
• Role models abound in support groups — in person, or online. You are with people who have, to some extent, walked in your shoes. Their strength and ability to cope can inspire and comfort you. Their behavior can mark the path throughout the course of your disease.
  
  
• A strong sense of community is present in a good support group. You feel your problems are not unique in the world, that others have coped, that you have friends in the group who can advise, care and help. Some participants comment that their support group — including those online — feel like a "family." The isolation of many cancer patients is lifted in this way.
  
  
• Groups encourage participants to feel free to ask for help. Many cancer patients struggle with needing assistance, finding it difficult to both ask for and receive support. In a support group, people ask for help regularly. It's the norm.
  
  
• Many support groups, especially those held face-to-face, include regular programs of great interest to cancer survivors. Topics like recurrence management, nutrition, genetics, relaxation, fears about the future and more are often presented, allowing the support group members to ask questions and learn a great deal. Similarly, some online communities direct interested participants to teleconferences and chat room presentations by top medical specialists.
  
  
• Attending a support group or participating online is something personal that you do only to care for yourself. It is a time of day or of the week that is private and personal in a world that is often filled by treatments and appointments and managing side effects. It is a respite and a refuge for many.
  
  
• Your support group can give your family and caregivers a break from your feelings. Many survivors fault themselves for talking too much with loved ones about their cancer, their fears and their needs. You weary of being what you consider to be a burden, adding concern to those who love you and are also upset and worried. Time spent with a support group, in person or online, is an opportunity to shift some of the burden to others who understand your need and can help.

It's worth noting that the characteristics that make face-to-face support groups attractive to people who attend may also apply to online support. Many people participate in both kinds of groups.

Face-to-Face Support

How they work. There are considerable variables in how support groups work throughout the nation.

• Leadership. Some are professionally facilitated, meaning they are monitored and sometimes led by a person trained for the work. This person might be a counselor, social worker or nurse. Others are peer-led support groups, meaning that, in the case of cancer, a survivor or group of survivors leads the sessions. In general, a professionally-led group tends to be more productive and focused, and the person leading the group is trained to provide individuals special help and support if needed. In some instances, peer-led group leaders have also received training in group management and run their groups very well.
  
  
• Time and Place varies. Meeting sites range from a hospital conference room to a doctor's office to a community center or meeting room in a hotel or office. One common ingredient in good locations is free or inexpensive parking, and a short distance from parking to the meeting place. This is easier on survivors. Most support groups seem to meet in the early evening or at lunch time, to accommodate working survivors. The length of a meeting varies as well, but most are at least one hour long.
  
  
• Cost varies, as well. Some sponsors charge a small fee to cover costs, but in the case of hospital- or physician-sponsored groups, there is usually no charge. Advocacy groups may ask for donations or charge a small fee to cover the cost of meeting space and refreshments. No one should be seeking to turn a profit on a support group.
  
  
• Refreshments seem to be almost a universal presence! Sometimes people bring things, other times the refreshments are provided by the sponsoring organization. Lunch support group meetings are often "brown-bag," with people bringing their own lunches.
  
  
• Groundrules will vary — but one that is always a part of a successful support group is confidentiality in regard to everything said in the session. Absence of confidentiality will destroy the group.
  
  
• Frequency. This varies, but most meet at least once a week. Some are monthly, or bi-monthly.
  
  
• Duration. Some groups are conducted for a limited time, and many more have no start or end date, but continue from year to year. Members come and go, as suits their needs and health.
  
  
• When to join. This is up to you. Some people begin participating in a support group during treatment and others wait until treatment ends. Many people remain in groups long after they have achieved remission, finding the support continues to be valuable. This is a personal decision.

Where to find them:

• Your local hospital or clinic where you are treated; in metropolitan areas, check to see which hospitals or cancer centers offer support groups.
  
  
• Ask the national advocacy organization for your cancer about support groups in your area.
  
  
• Ask at your oncologist's office.
  
  
• Ask your hospital's social worker for information.
  
  
• Check with the local chapter of the American Cancer Society for information.
  
  
• The Wellness Community, providing free support and resources for cancer patients, operates in 21 communities. Check to see if yours is one of them at www.wellnesscommunity.org.

What if I don't like it?
No one should feel compelled to attend a support group, no matter how other survivors may rave about their benefits. These sessions are not right for everyone. If participation makes you uncomfortable, more tense and less satisfied and supported than you did before attending, quit. Most people go at least twice before deciding to stop participating. The first session is likely to be a bit strange and awkward for you as a newcomer; only after the second session will you have a better sense of how the group works.

What if a good group turns sour?
This happens on occasion. Sometimes a group member's behavior will be significantly disruptive to the group's interaction, and make it hard for others to participate. Emotionally-troubled people get cancer, too — and sometimes these individuals will join support groups. This is one argument for participating in a professionally-led support group if possible, because the professional in charge can intervene and help resolve the problem of a disruptive participant.

Also bear in mind that sometimes an otherwise good and effective support group may have a meeting or two that is uncomfortable for you. Before giving up on the group, consider attending a few more sessions to see if things improve.

Online Support

Online support groups, many of which are a humming beehive of information, filled with conversation and chat, can be a first line of information on new developments in cancer.

Online communities offer more anonymity than face-to-face groups and it's easy for a person to remain essentially silent and invisible in the online world, if that is your choice. Online support groups are an enormous benefit to people who live in rural, small communities, where finding other survivors to talk with may prove difficult. Online conversation also works well for people who are not able to go out much or who work hours that don't permit them to attend "live" meetings. You don't have to dress for an online session; you can speak your mind at any time, including 3 a.m., and almost always, especially in the larger "communities," there is someone online who can answer an informational question you may have.

The cancer community is fairly rich in online lists and other resources. There is at least one list for many individual cancers, as well as general cancer lists.

How they work.
Online support groups work in a variety of ways, but many are what is called Internet mailing lists. Individuals wishing to participate should "subscribe" by sending their e-mail address to the list itself (most lists provide directions on how to "subscribe" and "unsubscribe"). Often you will be asked how you want to receive mail. Receiving mail by "digest" means that all of the day's messages will be delivered at one time during the day. Other methods allow messages from the list to reach your email box as they are written.

• Leadership. The most credible online mailing lists are "hosted" by clearly defined organizations, with a home page informing readers who they are and describing the purpose of the list or lists. For example, the Association of Cancer Online Resources (ACOR), at www.acor.org, has a home page explaining their 150+ mailing lists and the operating rules, such as a prohibition against commercial solicitations and against the information on the lists being used for research purposes. Advocacy organizations hosting lists also are clearly identified.
  
  
• Time and Place. Since these are online, you may write a message (called a "post") at any time, day or night.
  
  
• Cost. There is no cost to participating in online lists.
  
  
• Groundrules. These will vary from list to list. Usually when you sign on ("subscribe") to a list, you will receive a reply from the "listowner" (usually the individuals who monitor the list on a regular basis) detailing the expected conduct on the list, and other groundrules.
  
  
• When to join. Like "live" support groups, the time to join is when you feel the need for additional information and support and believe the online approach might be useful to you.
  
  
• Where to find online communities. Please see Support Groups in the NCCS Resource Guide for a list of cancer-related organizations offering these. Also, some of the large online "communities," such as About.com, AOL and Geocities offer listings of support groups of various kinds that may be of interest, from listservs to chat rooms.
  
  
• What if I don't like it? As is true with face-to-face support groups, there is no obligation to remain online if it does not meet your needs. With some groups, once you unsubscribe, you may receive an inquiry from the list manager asking why you've left. You can provide input at that point or ignore the inquiry.
  
  
• What if a good group turns sour? This happens on some lists, from time to time. Occasionally an individual will "flame" another list member — attack them for an opinion or point of view. Sometimes this unleashes a barrage of others commenting pro or con, and opinions get heated at times. When this happens, usually "voices of reason" intervene and request a calmer level of discussion. Most of the time this works in a day or so, but not always. If the atmosphere on a list turns into something you don't relish, you can offer your opinion and try to change it. If change isn't possible, it may be time to find another online community.

Questions to Consider

1. Do I enjoy the actual company of people like me, or am I more likely to communicate freely in an online environment?
   
   
2. Is it convenient for me to regularly attend the meetings of the support group I'd like to join?
   
   
3. Is the face-to-face group I am interested in facilitated by a trained health care professional?
   
   
4. Who oversees the online community I may join? Are the people providing the service and monitoring the content credible?
   
   
5. Is a support group of any kind right for me? What do I expect to get from the experience? How can I contribute to other participants?
   
   
6. Are there questions I want to ask and topics I would like to discuss that I would feel too uncomfortable to mention in person?
   
   
7. Can I find a support group for people whose illness stage is like mine? Is this important to me?

Resources