|
Thanks to dramatic and steady advances in cancer research, there is
a growing population of people in this country who are living with cancer.
These survivors have learned to face the “enemy, ” to find the strength
and determination needed to sustain the fight, and to develop coping skills
that allow them to deal with life one day at a time.
 Cancer survivors are an elite group, set aside by the
disease’s special mystique. Many draw a parallel to the survivors
of an horrifying military campaign...none is ever quite the same again.
A survivor will tell you that a cancer diagnosis is forever in the lives
of its victims;
it alters family relationships and puts friendships on trial. Those who
have fought for their lives are somehow different in the eyes of family
and friends, and only those who have “been there” can know what it is like
to negotiate cancer’s maze without a map.
Since no case of cancer is “typical,” every cancer patient must come
to grips with the disease in his or her own way. Some rely on inner
strength and/or their faith, others turn to family or friends for support
and encouragement. For a growing number of people, however, an organized,
disease-specific support group turns out to be exactly the link they need.
Many cancer patients find it especially helpful to talk with others about
treatment options, physicians who provide exceptional care and good advice,
and many of the other, day-to-day, quality of life issues.
 While it is true that Americans have always been "joiners,” the
number of people active in small groups has been steadily increasing
over the past decade. In fact, according to Robert Wuthnow’s Sharing
the Journey: Support Groups and America’s New Quest for Community,
about 40 percent of all Americans — about 75 million people — belong to
a small group that meets regularly and provides caring and support for
its members.
Prostate Specific Support
In February, 1990, five prostate cancer survivors gathered at the University
of Chicago Hospital talked about their experiences, and commiserated about
the lack of information about treatment options and the need for a sounding
board for other men diagnosed with the disease.
 “The founders talked about basics,” explained Henry “Hank” Porterfield,
a prostate cancer survivor and chairman and chief executive officer of
US
TOO International, Inc., a not-for-profit support organization for
men with prostate cancer and their families. “Soon we gained support from
some of the better urologists who saw the merit in a support network for
their patients, and a great deal of time and thought was expended in charting
the course for the expanding organization.”
What started with several chapters established with doctors and hospitals
has now grown to over 500 chapters throughout the U.S., Canada, Australia,
England, Europe and Turkey. US TOO has a very specific mission:
“to help survivors of prostate cancer and prostate disease and their families
lead healthy and productive lives, physically, mentally and spiritually,
by offering fellowship, shared counseling and discussion sessions — both
formal and informal — pertaining to updated medical options and a positive
mental outlook. US TOO Partners is the organization’s program for
wives of prostate cancer patients. Women can provide a powerful voice
in spreading awareness about this disease that claims the lives of far
too many husbands, fathers, brothers, uncles and sons.
Public Awareness A Top Priority
The organization assigns a high priority to public awareness and considers
reaching the nation’s male population — men who have not yet been diagnosed
with prostate cancer — one of its primary responsibilities.
“Fortunately, the number of people who know about prostate cancer is
steadily increasing,” explained Porterfield. “We’re working all out to
encourage men to take advantage of prostate cancer screening opportunities
so it can be diagnosed and treated early, when there is the best chance
for a cure.”
“We also have a responsibility to offer assistance to men newly diagnosed
with prostate cancer. This is often a time of extreme vulnerability,
emotional trauma, and depression. A chance to talk it over
with a survivor who has gone through the decision-making process, who has
considered the pros and cons of one treatment option over another, and
who is willing to share information in a non-judgmental way can really
make a difference,” Porterfield said. “We also are committed to working
with men with advanced prostate disease who seek information on both
traditional medicine and unconventional treatments.”
Porterfield says one of the organization’s greatest challenges is to
forge a strong relationship with urologists so more will encourage their
patients to give the support group a try.
“The old physician mind-set — ‘You can trust me to do what’s right for
you.’ — has pretty much fallen by the wayside. More and more doctors
today are well informed about the benefits of a support group for cancer
patients, and know that the all-important ‘outcomes’ are better when patients
become involved,” Porterfield explained. “We are really placing a
strong emphasis on reaching more men during the critical time window right
after diagnosis while they are still trying to reach a treatment decision.
We know they are still in shock, and understand that some men are reluctant
to talk about ‘it’ and don’t yet realize that they do have options.”
Many men who have taken an active role in prostate cancer support organizations
are former captains of industry who have had long and distinguished careers
as decision-makers. Richard Howe, retired president and COO of Pennzoil
Company, is one such leader and is extensively involved in the prostate
cancer movement. Dick was diagnosed with prostate cancer in May 1991,
and underwent a radical prostatectomy in July of that year. Since
then he has counseled approximately 2,000 men who have been diagnosed with
prostate cancer. He currently serves on eight committees for prostate
cancer organizations at the national level.
 “It has been my experience that people who actively learn more
about their disease and all the available options to treat it do better,”
Dr. Howe said. “I cannot stress strongly enough the importance of
men being able to reach out for help and advice during the decision-making
‘window.’ We are constantly looking for ways to improve this interaction.”
As a member of the Advisory Group on Prostate Cancer of the American
Cancer Society, Howe helped in the development of a patient handbook, “Prostate
Cancer: Post-Diagnosis, Pre-Treatment.” (Request a copy of the booklet
by calling 1-800-ACS-2345.) The comprehensive 20-page publication
contains straightforward information on prostate cancer, a discussion of
treatment and therapy options, a glossary of terms, as well as a listing
of information and organization resources.
People Who Need People
“There are basically four kinds of people who participate in the cancer
support groups,” Howe explained. “Some seek out the group when they
have been diagnosed but have not yet committed to a plan of treatment.
This is the best-case scenario, when survivors can help the new member
gain access to a vast assortment of information to factor into his decision
making process. Unfortunately, in far too many cases, decisions must
be made faster than the support group’s meeting schedule can accommodate.
I know that groups around the country are experimenting with adapting programs
like “Reach to Recovery” (which matches up breast cancer survivors with
those who are newly diagnosed) for prostate cancer patients. Again,
we are trying to open this critical window a little wider.”
“The second group of members are men who have been treated successfully,
who experienced no particular side effects, and who come to one or two
meetings and then drift away. They appear to have no long-term need
to continue the dialogue, either because family or loved ones have been
able to fill this void for them, or they feel they have licked the disease
and want to move on. The ‘I’m OK’ group don’t tend to stay too long,”
Howe pointed out. “However, some of the men who have caught the disease
early and managed to avoid the treatment side effects go on to become the
group’s ‘crusaders.’ These are the men who ultimately become involved
in the leadership of the support group and who actively go out and help
educate others about prostate cancer. I guess I’m fortunate to fall
into this category, except that I did encounter and have dealt with significant
side effects.”
“The remaining members are those who gain support in dealing with side
effects of radical prostate surgery and who are actively learning more
about their disease, and men who have advanced disease who are helped by
the group while undergoing hormonal therapy or chemotherapy and other aggressive
medication therapy programs,” Howe said. “If I could design the ‘perfect’
support group, I’d like to see a better balance. We need men who
are doing great, those who have some problems, and those who are maximizing
the quality of life for whatever time they have left. There’s a lot
we can learn from each other,” Howe concluded.
This learning process can be augmented significantly when physicians
devote time and resources to the support groups, as well. Last year,
with the advice and cooperation of its distinguished Board of Medical Advisers,
US TOO sent a letter to the entire membership of the American Urological
Association requesting their cooperation in referring newly diagnosed patients
to local chapters of the support organization. One result of this
communication has been that five times more physicians visited the US TOO
exhibit at the AUA convention than the previous year, and more doctors
are requesting information about how to refer new patients to the organization
and how to establish new groups.
Relationship Research
In 1997, US TOO International, Inc. commissioned a study to compare
prostate cancer patients’ perceptions with those of physicians regarding
treatments, awareness, attitudes, and views of the relationships between
the two groups. The 20-minute telephone survey was conducted
by Louis Harris and Associates, Inc. among 1,000 US TOO members together
with 200 interviews with a national sample of urologists for whom at least
10 percent of their practice was the treatment of prostate cancer.
Patients in the study appear to recall having treatment options discussed
following diagnosis 84 percent of the time, while doctors say they discuss
options with patients 99 percent of the time. While doctors say that
in 99 percent of their cases, they discuss impotence as a side effect of
surgery only 74 percent of the patients recall being told of this risk.
Almost 80 percent of the patients surveyed report that they take an active
role in making treatment decisions. Doctors (92 percent) and patients
(85 percent) agree that support groups like US TOO are very or somewhat
supportive for prostate cancer patients.
“A high percentage of the men in the survey appear to have accepted
the responsibility for their own bodies and participate in decisions on
treatments,” Porterfield continued. “They say they have relied on
a variety of sources for gaining knowledge about their disease and report
it is very satisfying to be able to share this information with other patients
in the group.”
Both activists agree that there are still challenges to be met.
“Look at it this way, “ Howe suggests. “The good news is that
there are now about 1.5 million prostate cancer survivors out there.
These are men who have been diagnosed with their disease. There are
probably another 8 or 9 million men in this country who have either been
diagnosed with the non-clinical prostate cancer, or who have one or more
prostate cancer cells in their bodies and don’t know about it. So,
there is an absolutely huge target audience for information about this
disease that kills more than 3 out of 100 men. One of our objectives
is for men diagnosed with prostate cancer to already have heard about US
TOO and know how to reach a chapter nearby as soon as they need us.
We also want to persuade the majority of urologists to refer their patients
to one at this critical stage.”
More Funding For Research
US TOO is asking people to sign the National Prostate Cancer Petition
Drive for One Million Signatures which urges the federal government to
allocate more funding for research, to make prostate cancer a national
health priority. The organization points out that the federal government
is devoting significantly higher dollars to both breast cancer and AIDS
than to prostate cancer when compared by almost any measure (1996 Research
dollars: AIDS $1.6 billion; Breast Cancer - $550 million; Prostate Cancer
- $80 million. Dollars per death in 1996: AIDS — $31,000; Breast
cancer — $12,000; Prostate Cancer — $2,000.).
“It is our objective to get PSA testing paid for,” said Porterfield,
“the same way women fought to have mammograms covered as a viable diagnostic
tool for early detection of breast cancer. We simply have to get
past the absurd excuse that there is no ‘proof’ that early detection improves
quality of life. Men should be able to analyze the pros and cons
of screening programs and make their own decision about whether or not
they want access to early discovery. Elected officials in Washington
are simply going to have to come to the conclusion that health care funding
decisions have been badly handled in the past and it is time to rectify
this. It is up to us to keep the pressure on all levels of government
to remind our lawmakers to do whatever is necessary to discover a cure
for this deadly disease in all its forms.”
~ Barbara Payne |
