The following excerpt is taken from Chapter
14 of Colon & Rectal Cancer: A Comprehensive Guide for
Patients & Families by Lorraine Johnston, copyright 2000 by
O'Reilly & Associates, Inc. For book orders/information, call
(800) 998-9938. Permission is granted to print and distribute this
excerpt for noncommercial use as long as the above source is
included. The information in this article is meant to educate and
should not be used as an alternative for professional medical care.
It would be difficult to say too many good things about the effect of a
support group on a colorectal cancer survivor. In addition to the personal
testimonials from people who feel they found sanity, love, and knowledge
from the members of their support groups, research by Dr. David Spiegel has
shown that emotional support can extend the lives of some cancer
Support groups are the one place outside of your inner circle of loved
ones where you can ask or say just about anything. In some cases, you can
ask help of support group members that you would be afraid to ask of family
for fear of overburdening or frightening them. Moreover, the setting is
sometimes freer than the family setting regarding candid speech, because
everyone present understands all too clearly what you're going through.
For some, support groups can be the difference, literally, between life
and death. The opportunity to exchange information with those who have
already weathered colorectal cancer can provide you with the knowledge to
question your treatment and seek medical help elsewhere. Support groups are
an immeasurably useful way to do this, bringing together a variety of
skills, including medical and legal knowledge.
Support groups are offered locally in many areas by groups such as the
American Cancer Society, the Wellness Community, the United Ostomy
Association, or local hospitals. Telephone support groups are overseen by
several of the nonprofits dedicated to curing cancer. If you have a
personal computer (PC), support groups are also available on the
Local, telephone, and Internet support groups have their advantages and
disadvantages. Many people use several.
Local support groups
Local support groups are useful for those who are able to get about
easily, have access to a car, and enjoy face-to-face discussion, even about
topics that might be upsetting. If you're in a local support group, you're
likely to have a stream of visitors if you're hospitalized, and friends to
offer you instrumental support such as help with groceries or baby-sitting.
Often, members trade phone numbers and form deep friendships.
The disadvantages of local support groups are that they usually contain
only a small number of people, perhaps ten or less, and only meet at
certain times of the week or month. The smallness of the group can affect
the quality of the information shared. For example, if no group member has
traveled for care, you'll have to make your travel plans with less
foreknowledge. Some members of local support groups report that they feel
excluded when things take a turn for the worse, as if some group members
want to shield themselves from the possibility that similar bad things may
happen to them, too. This is less likely to happen if the group is
moderated by a trained therapist.
Internet support groups offer several hundred friends available at all
times of the day. You can communicate at 3:00 AM when you have insomnia,
and you can communicate with other survivors even if you have trouble
getting around for various reasons. The people you meet will be from all
over the country, and in some cases, all over the world, and represent a
tremendous amount of experience. Furthermore, if you're a little shy about
expressing emotion in front of other people, an Internet group is a good
choice because you can write a message and read what you plan to say before
you decide to send it. If you need to cry, you can do so without feeling
conflicted about crying in front of other people.
Many of the Internet support groups schedule in-person reunions and
gatherings. Often, members form personal friendships and write private
email, or trade phone numbers to form even closer friendships. Sometimes
members discover that they're living quite close by, and become very good
Thankfully, I quickly learned the ropes from many people on the Internet
discussion group I joined. Knowledge is power. If I hadn't searched the Web
first for information on colorectal cancer, I think I would have been
shocked to hear I would have part of my colon removed. At least I learned
that only about 5 percent of patients these days wind up with a colostomy.
Whew! That was encouraging. Sure was glad I knew what to expect when I saw
my surgeon for the first time. It gave me the tools to ask intelligent
questions. While it may have been possible to have the surgery done
laparoscopically, from what I learned, I opted for the big incision so he
could really look around and see what's what, and have the Life Port
implanted, and oophorectomy, as radiation would cause menopause
The Association of Cancer Online Resources (ACOR) has pointers to many
cancer email discussion groups. ACOR offers a handy automatic subscription feature for
these and other discussion mailing lists.
A list of ACOR and non-ACOR colorectal cancer-related Internet support
groups follows. Because the Internet is a dynamic resource, this list may
not be comprehensive. The number of subscribers given was approximate at
the time of writing and will vary over time:
- COLON, an ACOR discussion group for those with colorectal cancer and
other diseases of the colon. This group was started by Marshall Kragen, a
long time survivor of colorectal cancer and fierce defender of the rights
of cancer survivors. Marshall was a member of the National Coalition for
Cancer Survivorship who designed and developed the original NCCS Internet
site, and was the original author of CanSearch, Internet software that
helps Web users find cancer resources. Marshall died in 1998 of heart
failure. About 600 colorectal cancer survivors and their loved ones take
part in the COLON group discussions. See ACOR's site.
- SICKKIDS, a discussion group just for children, but
supervised by adults.
- YAP, a discussion group for young adults age 18-25 dealing with their
own illness or that of a loved one. This list was formed in late 1998. See
ACOR's site, http://www.acor.org.
- Cancer-Pain, Cancer-Sexuality, and Cancer-Fatigue are ACOR discussion
groups for those with cancer-related side effects and long-term effects.
These groups were formed in early 1999. See ACOR's site.
The chief disadvantage of an Internet support group is that the loss of
a friend can be very difficult when you cannot say good-bye in person, when
you have no photographs to remind you of them, and no grave to visit.
Sometimes group members simply will never hear again from another member,
and they never learn what really happened. Some group members deal with
their grief by creating a memorial web page dedicated to a lost friend,
containing photos and examples of wisdom learned about living with
Other disadvantages of Internet support groups include cultural
differences that cause mistaken communication and needless arguments, heavy
mail volumes about topics that you may feel don't pertain to your
circumstances, incorrect medical information, a range of social and
communication skills, and, of course, the cost of a personal computer and
access to the Internet.
A recent survey has shown that the over-65 age group is among the most
active and fastest growing groups on the Internet, seemingly not reluctant
to acquire the new skills needed to use a PC.