The InternetChanging the Way Cancer Survivors Receive SupportJohn Sharp, MSSA, LISW
The Internet has transformed the activist cancer survi-vor’s search for cancer information.1 However, that is
only half the story. Cancer survivors are using the Internetto meet their needs for support via thousands of e-mails,chat rooms, and other tools. As support groups have be-come specialized by types of cancer or treatment, agegroup or problem-solving approach, better Internet toolsand faster computers and connections have been makinge-mail a daily experience in millions of homes. The inter-section of these two developments in the 1990s createdan international network of support that continues toexpand.2
Communication Tools on the Internet
There are several tools for communication and interac-tion on the electronic superhighway, and each has a use forcancer survivors.
Internet Discussion Groups
By far the most extensively developed and popularform of Internet communication is the Internet discussiongroup, often referred to as a listserv. A listserv in one senseis a subscription service to an ongoing discussion on a spe-cific topic. With regard to cancer, this can mean any type ofcancer or treatment. One subscribes by sending an e-mail toa central computer or by completing a subscription form ona Web site (Table 1). Once becoming a subscriber, themember is given an e-mail address by which she or he cansend messages to everyone else who is a subscriber. Inreturn, the user receives all messages from other subscrib-ers. For instance, on BMT-TALK, a listserv for those whohave or are undergoing bone marrow transplantation(BMT), a prospective patient might send a message to thegroup stating that he has been referred to a specific cancer
center for BMT and may ask whether anyone knows any-thing about that BMT program. Messages might be returnedwithin 2 days and may include responses from persons whohave been treated at that facility, from those saw the sameoncologist, or, maybe, from others raving about the nursingcare. On the same day, there may be a message from aspouse who has her laptop in her husband’s hospital roomand is reporting, “Day 4: Tough day of chemo but Jeff issleeping now.” The asynchronous nature of listserv com-munication allows subscribers to retrieve or send messagesany time of the day or night.
Most of the cancer listservs for survivors and familymembers are supported by one organization, the Associa-tion for Cancer Online Resources (http://www.acor.org).This remarkable nonprofit organization sponsors 79 suchgroups and has developed a specialty in rare cancers. Be-cause persons with rare or even uncommon cancers may begeographically dispersed, the listserv provides a link amongpeople with a common experience that otherwise occursonly in large treatment centers in which an oncologist spe-cializes in that diagnosis.
Web Forum
Another tool that is becoming more common is theWeb forum (Table 2). This is similar to the listserv in thatmembers post messages on survivor issues to be read byothers. However, these messages are posted using a Website form and then immediately appear on the Web site,often categorized by topic or “thread.” Thread, a term alsoused in listservs, means an ongoing discussion on a specifictopic. For example, someone may post a question about atype of complementary therapy that was recommended tothem and ask for others’ experiences. Responses to thisquestion or additional questions on this topic would beconsidered part of the same thread. These posting areas canbe sponsored by cancer centers, disease-specific survivorgroups, or Web portals (customized search engines). Thereare also Web-based posting areas for memorials of thosewho have succumbed to cancer.
Some Web sites offer the opportunity to post personalstories. The potential benefits with this tool are the thera-peutic value to the survivors who are writing their storiesand the validation received by those who read them andfind some commonality in others’ experiences.
Department Editors: Marie M. Lauria, MSW, CCSW; VictoriaMock, DNSc, RN, AOCN; and Marion E. Morra, MA, ScD.
John Sharp, MSSA, LISW, Web Administrator, ClevelandClinic, Cleveland, Ohio, and Coordinator, listserv for the Associa-tion of Oncology Social Work, Glenview, Illinois.
Queries and contributions for Patient Resources may be sentto the Department Editors at Cancer Practice, American CancerSociety, 1180 Avenue of the Americas, New York, NY 10036.
Chat rooms are a popular form of communication onthe Internet. Unlike other tools, chat rooms are “real-time”communication; that is, they offer the opportunity for sev-eral people to discuss a topic at the same time. These oftenare scheduled on specific topics by sponsoring groups, tomaximize the number of participants. The chats also maybe sponsored or led by an expert or healthcare provider. Inthis case, a physician or other healthcare professional, usu-ally at a healthcare portal site, answers questions at a sched-uled time of the week or month.
Advantages and Disadvantages
While online interaction cannot replace support that isreceived face-to-face in effective support groups, there aresome unique advantages. The anonymity of the Internetallows for the discussion of difficult feelings and stressevents in a manner that is less fearful for some. Like in-person support groups, online support provides the senseof commonality, that “you are not alone” in facing cancer.This is particularly true for the person with a rare or un-common cancer who may not feel that those with morecommon cancers are having the same experience. Thosewith rare cancers may find the opportunity to share thiscommon experience only with others on the Internet. Also,there is the opportunity for cancer survivors who havecompleted treatment to help others. It should be noted thatmany Internet discussions on cancer are monitored or haveparticipants who are oncology professionals. Finally, thereis the unique development of Internet communities. Asnoted by Esther Dyson,3 Internet communities developtheir own set of rules and enforce them. Similarly, GillesFrydman of the Association for Cancer Online Resourceswas quoted in the Wall Street Journal,4 saying, “We neverlet someone speak about a miracle cure without askingthem for support or data.” In this manner, the communityof cancer survivors is less likely to fall victim to unproventreatments.
Even while acknowledging its benefits, support re-ceived for cancer on the Internet must be viewed withsome caution. One must be aware that information may bebased solely on personal experience and not on science.Those promoting unproven methods may appear on any ofthe Internet communication vehicles and may provide mis-
leading information. As in face-to-face support groups,there may be unsupportive interactions or even confronta-tions. Many settings have no professional facilitators, whichcan leave some emotionally fragile survivors at risk of beingvictimized. One hazard that is unique to online support isthat it is more likely, although still rare, that someone on thelistserv or in the chat room could pose as a cancer survivor.Such posers can damage the credibility of online support.
Finally, there is a problem that also occurs in supportgroups: the issue of death. Just as in the real-life situation ofknowing those who “don’t make it,” the online groups mayhere that a member has died and must face their feelings ofdeath with the online support network. The issue of thedeath of a member often is handled on the Internet as it isin an in-person support group: with great empathy but alsowith the fear of a similar path for others in the group in thefuture.
The Future of Internet Support
The technology is already available to provide a photoor video/audio file as a more personal identification on theInternet. This has the advantage of making the virtual rela-tionships in cyberspace more real, but it takes away some ofthe anonymity that can enhance interaction for some per-sons. Teleconferencing is within the reach of many Internetusers with newer computers and faster modems or cableconnections. This will allow support groups to occur withlive video and audio with participants from anywhere in theworld. Already there has been significant proliferation ofspecific and specialized groups. This trend will continue,perhaps subdividing into groups for specific stages of majorcancers and filling in the gaps for other rare cancers orspecific age groups, such as a chat room for older women
Table 1. Examples of Cancer Listservs
ALL-L: acute lymphocytic leukemia general listBC-SUPPORTERS: support list for husbands of breast cancer patientsCANCER-PAIN: pain associated with cancer and cancer treatmentsKIDNEY-ONC: the kidney cancer online support groupLYMPHEDEMA: the lymphedema online support groupPED-ONC: the pediatric cancers online support groupSARCOMA: the sarcoma (cancer) online support groupTC-NET: the testicular cancer online support group
Table 2. Examples of Internet CommunicationTools for Cancer Support
Type of Tool Example of Web Site: Address
Listserv ACOR: www.acor.orgWeb forum Cancer Survivors’ Network:
www.cancersurvivorsnetwork.orgPancreas Cancer Web:
http://128.220.85.41:80/Pancreas_Chat/Private online support
groupsCancer Care, Inc.: www.cancercare.org
Ask the expert or doctor Prostate Cancer Infolink:www.comed.com/prostate
Americas Doctor:www.americasdoctor.com
Personal stories Oncolink: www.oncolink.comInternational Myeloma Foundation:
www.myeloma.org/patienttopatient.htmlChat rooms OncoChat (IRC): www.oncochat.orgFor children Kids Konnected: www.kidskonnected.orgClinical trials Center Watch: www.centerwatch.com
146 CANCER PRACTICE May/June 2000, Vol. 8, No. 3
with breast cancer or a Web forum for African Americanmen with prostate cancer. As the Internet becomes moreavailable on portable communication devices, such as per-sonal digital assistants, cancer support is likely to filter intoonline support on the go.
Conclusions
The Internet provides the tools and places that are gen-erally helpful adjuncts to family and local supports for can-cer survivors; for some, support through the Internet is alifeline. Information gleaned from listservs, chat rooms, andinteractive Web sites should be approached with a healthyskepticism, and survivors should be trained to ask for evi-dence to support claims about treatment effectiveness.5 On-cology professionals should help to direct and educate sur-vivors who have an interest. This includes informingpatients who have recently received a diagnosis of cancerthat the Internet is another potential source of support dur-ing the cancer journey. Professionals can use supportgroups and seminars for patients to provide education onthe interactive tools that are available, how to access them,and how to use them effectively.6 In some cases, Internetaccess could be provided at the cancer center or wellnesscenter for those who do not have access to a computer orthe Internet at home.
Oncology social workers, nurses, and physiciansshould look for opportunities to use these tools to enhancecoping and compliance. For instance, connecting outpa-tients who are undergoing BMT who may be staying in avariety of hotels in the area around the hospital, providingsupport for caregivers in a hospice who cannot leave hometo attend groups, and expanding support for children andyoung adults with cancer or for those whose parents havecancer. The possibilities are limitless, so these innovationsneed to be prioritized to fulfill identified needs.
Another use of these support tools is to educate andrecruit for clinical trials. The low rate of recruitment forcancer clinical trials is well known. One reason for this is a
lack of information on clinical trials; some support groupslike the kidney cancer listserv frequently offer informationabout new clinical trials. Another major barrier in clinicaltrial recruitment is the patient’s fear of being a “guinea pig”or not being allowed to withdraw from a trial. Online sup-port groups can help to overcome knowledge and emo-tional barriers to clinical trials. While recruitment andscreening for trials can occur on the Internet, human sub-ject protection must be ensured via a face-to-face review ofinformed consent and will not soon be replaced by Internettools.
Finally, these interactive tools hold promise for oncol-ogy professionals who face difficult challenges in thecourse of their work. Online support for physicians, nurses,and social workers has already proved to be a key factor inmitigating burn out. This can be especially true for those inrural areas who are without local professional networks.The Social Work Oncology Network of the Association ofOncology Social Work, for example, is a listserv that began2 years ago. This forum provides daily support and infor-mation for a significant portion of the members of the As-sociation of Oncology Social Work both nationally and in-ternationally.
References
1. Sharp J. The Internet: changing the way cancer survivors obtaininformation. Cancer Pract. 1999;7:266–269.
2. Biermann JS, Golladay GJ, Greenfield MLVH, Baker LH. Evalua-tion of cancer information on the Internet. Cancer. 1999;86:381–390.
3. Dyson E. Release 2.0: A Design for Living in the Digital Age.New York, NY: Broadway Books; 1997.
4. Chase M. A guide for patients who turn to the web for solaceand support. The Wall Street Journal. 1999;September 17: B1.
5. Markman M. Cancer information and the Internet: benefits andrisks. Cleve Clin J Med. 1998;65:274–276.
6. Hensen DE. Cancer and the Internet. Cancer. 1999;86:373–374.
