Surviving cancer: with a lot of help from my friends

I was diagnosed with prostate cancer last September 18. The terrorist attacks a week earlier gave me all the metaphors and rhetoric I needed to describe how I felt: Aliens seeking immortality had mounted a surprise attack. I was at war, my innocence lost. Life would never be the same.

In 1978, Susan Sontag attempted to demystify cancer in Illness as Metaphor (see access, page 24), but metaphors she identified then--"a ruthless, secret invasion ... a rousing call to fight by any means"--felt just as apt in 2001.

The Big C. We've come a long way in looking cancer in the face since the days when doctors spoke the C-word to families, but not to patients, and obituaries routinely referred only to death "after a long illness." Still, the fear, confusion, and depression that I was feeling came from a deeper place than any particulars of the diagnosis alone.

Even the urologist's confident "It's eminently treatable" was less than wholly reassuring. From what I knew about prostate cancer treatments, the possible side effects of the cure sounded nearly as bad as the disease. Assuming I lived, I could be left impotent or incontinent--hurled back to childhood, bereft of a primary marker of manhood or sentenced to wear diapers for the rest of my life. It wasn't just me. Euphemisms continue to thinly conceal our culture's squeamishness about bodily functions and their loss. I couldn't locate the shelf for incontinence pads in my neighborhood Long's Drugstore, until I found an aisle labeled "personal products," as if aspirin or bandages or shaving cream aren't personal products.

MYSTIFICATIONS

Understanding prostate cancer ("PCa" to we who are its intimates) is clouded by two contrary mystifications:

1. "Cancer is a death sentence."

No. Being born is a death sentence. Cancer is a disease. If caught early enough, it can often be treated, and cured or contained.

2. "Prostate cancer is an old man's disease. Men `die with' rather than `die of' it."

About 31,000 men will likely die of it this year in the US, many of their deaths horrible, especially when the cancer has metastasized into their bones.

Patrick Walsh and Janet Worthington (see access) summarize the prostate paradox: "The prostate.... does much more harm than good, located in a terrible area that complicates any attempt to treat it" (see diagram next page). It doesn't seem necessary for either life or reproduction (researchers disagree about its exact function) but it attracts a disproportionate share of problems. Unlike nearly every other body part, it keeps growing throughout life. It is the bane of older men, squeezing the urethra (which passes through it), and provoking famously urgent and sometimes frequent bathroom dashes.

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Prostate cancer usually--but not always--grows slowly. It is best treated if still prostate-contained, but it usually manifests no symptoms until it's spread beyond the prostate. Fortunately, medicine has developed early screening tools. In a digital rectal examination (DRE), the doctor inserts a finger into the rectum (often after an embarrassed apology) and feels for enlargements or other abnormalities.

Only some tumors can be felt. About 1990, doctors added a PSA (prostate-specific antigen) test. PSA, measurable through a blood test, is produced only by prostate cells. Cancerous cells produce more than normal cells. PSA level can be a red flag long before other symptoms develop. (1)

Based on my PSA; the type of cancer found in my biopsy; and my age, health, and best-guess life expectancy, I was a candidate for virtually every major treatment: surgery, external beam radiation, proton beams, brachytherapy (implanting radioactive "seeds"), freezing the prostate, hormones, "watchful waiting" (monitoring but doing nothing else). No treatment is unequivocally regarded as "best." Each has advantages and definite side effects and disadvantages.

SELF-EDUCATION

I began to seek every source of information and support. I'm grateful for all of them. But each can also provide biased, incomplete, or misleading information. Here's my experience:

* MDs. Choosing the practitioner may be more important than choosing the treatment. I want my only body worked on by someone who's competent, experienced, up-to-date, well-practiced. The best books and websites (see access) offer good guidelines and questions to ask when choosing a doctor, but they can't make the choice for a person.

Caveats: Urologists are trained as surgeons, and usually recommend surgery if it looks viable. Radiologists tend to favor radiology. Etc. Getting additional opinions is crucial. Doctors sometimes understate problems ("this may hurt a little"). Nurses are often better sources of information about how much it will hurt, how long it will take, what to expect.

* My partner. Along with all the other support she gave me, including camping out on the hospital room floor after my surgery, my wife Pat became part of my decision process. We attended medical consultations together, compared notes, and weighed options. She's the person who knows me best, and sees through me best. Fairly early, we began to talk about "our prostate." And she was going to live with the consequences of my decision, which could be short- or long-term impotence, loss of libido, depression, even the small--but real--chance I could die during treatment.

There's another good reason to include partners; they often have as much difficulty dealing with PCa as do patients. In a recent Memorial Sloan-Kettering study more wives than patients displayed a host of stress indicators, including fatigue, worry, depression, loneliness, and trouble sleeping (the studies I've read about all focus on wives; I haven't seen any that address unmarried male or female partners).

* PCa survivors. Some of my very best sources of information were PCa survivors, who were generous enough to talk frankly, knew what I was feeling, and knew the answers to questions they wished they had asked.

Sharing the news of my cancer was not easy for me. But time after time, someone replied, "Oh, I'm a survivor," or "I know someone you can talk to." I talked with friends and friends of friends who had chosen every major therapeutic option.

I also found a PCa support group that meets weekly at our local hospital, The group includes veterans of just about every procedure--some with better results than others. Some members have made a near vocation out of tracking new PCa research. All are forthright, openly sharing intimate details and feelings.

Survivors caveat: Some people get defensive about the procedure or practitioner they chose. Others are just angry. Support groups can be skewed toward people experiencing problems (men often stop attending if they aren't having complications). I learned to talk to as many people as I could, and to take no one's experience as "typical."

* Internet self-help groups. Tom Ferguson ("Online Health," Whole Earth, Winter 2001) was right. Web-based groups can be an excellent way to contact a large circle of highly motivated fellow inquirers, pick up strategies, learn about new research, or post specific questions.

Same caveats as above, without the chance to read expressions and body language.

* Reading. The material available in books, articles, and the Internet can be overwhelming, and it keeps growing. My best tips on what to read have come from survivors.

Caveat I: The field keeps changing. Anything (especially a book) more than about five years old is likely to be out of date.

Caveat II: It may be that people with more dramatic problems are more likely to want to write them up. In any event, everyone's experience is different. Virtually every account I read contained at least one bad experience that I didn't have. On the other hand, if I ever write up my surgery and recuperation, I'll be able to tell some scary stories I haven't heard from anyone else.

Pat and I eventually chose surgery. Part of our decision was rational: If the cancer was contained within the prostate, surgery offered the best chance of getting it all. Comparable long-term survival statistics aren't yet available for many other treatments. Surgery allows examination of the prostate to get the most accurate picture of the cancer's spread. Treatments such as radiation can usually still be tried after surgery, but often not vice versa. Part of our decision was not so rational: we both just felt more negative about being irradiated than being cut.

Was I right to go for a "hit it with everything you can" strategy rather than hope the cancer would be slow-growing? Post-op pathology of my prostate revealed some much more aggressive cancer than the biopsy had showed; it had extended into, but not through, the prostate's capsule. I'm glad I didn't wait. Two months post-surgery, my PSA is undetectable. I'll need to keep monitoring it forever, but it's where I want it to be now. Continence? No real problem. Potency? It's too early (I hope!) to know; the nerves were spared, but they can take months to heal. Did I make the right decisions? I'll never know. I made the best one I could, with the information at hand and the help, love, and prayers of lots of friends. I couldn't ask for more.

PROSTATE CANCER FACTS

About 190,000 men in the US will be diagnosed with prostate cancer this year. 31,000 are expected to die of it.

One in six American men can expect to be diagnosed with prostate cancer during their lifetimes.

Asians have the lowest prostate cancer rates in the world, but their risk increases dramatically when they move to Western cultures.

African Americans have the world's highest prostate cancer rate. The percentage of African-American men who develop prostate cancer is 40 percent higher than that of white Americans. Black Americans die from PCa at double the rate of whites.

The risk of prostate cancer is twice as high when one close relative has it; five times as high when two close relatives do.

In one study of autopsy results, 30 percent of men over 50 and 80 percent of men over 80 had cancer in their prostates, though many were never aware of it.

Research continues on diet and lifestyle factors that might encourage or prevent PCa. High-fat (especially animal fat) diets seem bad. Selenium and Vitamin E, and perhaps soy, appear to help, but nothing is definitive.

PROSTATE CANCER ACCESS

RESOURCES ABOUND. THESE WERE THE MOST HELPFUL TO ME. --MKS

BOOKS

PROSTATE CANCER
Treatment Guidelines
for Patients
The National
Comprehensive
Cancer Network (NCCN)
and the American Cancer
Society (CS)
2001 (Version II); 57 pp.
Free from NCCN. 888/909-6226,
www.nccn.org

Not as detailed as other
recommendations, but a
helpful introduction, with
useful decision trees to
walk the reader through
choices at each stage from
screening through post-treatment
follow-up.

DR. PATRICK WALSH'S
GUIDE TO SURVIVING
PROSTATE CANCER
Patrick C. Walsh and Janet
Farrar Worthington
2001; 352 pp.
$25.95
Warner Books

Patrick Walsh is famed
for inventing nerve-sparing
surgery, the breakthrough
that now allows 25-75 percent
of men (depending on
age, health, etc.) to regain
potency after surgery. The
Guide covers everything in
about as much detail as I
could stand, especially at
first. Walsh clearly calls
surgery "the gold standard,"
but covers other therapies
fairly. Some of his specific
recommendations (e.g. waiting
two to three months
before the first post-op PSA
test) are minority positions.

THE ABCs OF
PROSTATE CANCER
The Book That Could
Save Your Life
Joseph E. Oesterling
and Mark A. Moyad
1997; 364 pp.
$22.95
Madison Books

By the time I got to this
book, I knew enough that
some of it felt a little simplified,
but it would have been
a very good introduction.
Especially useful are charts
for each treatment option,
with clear summaries of
pros and cons, survival
rates, and percentages
of patients experiencing
various side effects.
Personal stories from
famous survivors (why so
many Republicans?) and
from the loved ones of nonsurvivors
may be the jolt a
man needs to get himself
checked. The testimonials
from well-known African
Americans are especially
poignant, given the much
higher incidence of PCa in
the black community.

MAN TO MAN
Surviving Prostate Cancer
Michael Korda
1997; 272 pp.
$13
Vintage

The renowned Simon &
Schuster editor lays bare
his doubts, fears, troubles,
and coping strategies, from
the time of his diagnosis
through nine months after
surgery. Remarkably candid.
My only hesitance is that so
much goes wrong during
and after Korda's hospitalization.
Many people,
including me, didn't have
nearly as many complications
as he did, and reading
this book before my surgery
may have unnecessarily
increased my anxieties.

ILLNESS AS METAPHOR
AND AIDS AND ITS
METAPHORS
Susan Sontag
2001 (reissue edition);
183 pp.
$13
Picador USA

Picador has just reissued
these classics, first published
in 1978 and 1989.
Sontag wrote Illness As
Metaphor, she said, because
"the metaphoric trappings
that deform the experience
of having cancer have real
consequences: they inhibit
people from seeking treatment
early enough, or from
making a greater effort to
get competent treatment.
The metaphors and myths, I
was convinced, kill." They
still do.

ONLINE RESOURCES

PROSTATE PROBLEMS
MAILING LIST
Sign up on
www.acor.org/prostate.html
or by sending an email to
[email protected]
.ORG with a blank subject
line and a message of SUB
PROSTATE Firstname
Lastname [i.e., your name]

This unmoderated forum,
one of 143 under the
umbrella on the Association
of Cancer Online Resources,
discusses all manner of
problems and treatments.
Everyone in it is in the same
boat, and the atmosphere is
respectful, supportive, and
forthright. Which isn't to say
that everyone is in agreement.
Lots of pointers to
new research and other
resources.

RP
Subscribe via
www.prostatepointers.org
/mailman/listinfo

A listserv devoted to concerns
of men--or loved
ones of men--who have had
or are contemplating a radical
prostatectomy. I posted
a question one day, and had
six emails by the next day
with recommendations from
men who had dealt with the
same problem.

The same website is also
a portal to listservs focused
on each of the other major
treatments.

PHOENIX5
www.phoenixs.org

A library of information,
much of it written by families
and survivors, with
good links to articles and
other resources. I found
the following two especially
useful:

TAKING ON PROSTATE
CANCER
Andy Grove with Bethany
McLean. www.phoenix5.org
/articles/Fortune96Grove
.html

This 1996 Fortune article
by Intel founder Andy Grove
recounts the methodical
analysis that led him to
choose brachytherapy.
Considered a standard in
many PCa circles.

RADICAL
PROSTATECTOMY
SURVIVAL MANUAL
Ron Voss and Janet Olson
www.phoenix5.org/Basics/tre
atsides/vossRP/vossRP1.html

This first-person account
by a man and his wife gave
us some of the best info on
how to prepare for surgery,
items to bring to the hospital,
what to expect. Our
experience was slightly different
from theirs, but we
were readier to respond to
problems because of what
we learned from them.

SUPPORT GROUPS

P5's LIST
www.phoenix5.org
/supportgroups.html

Includes contact information
for groups in about
twenty states, plus national
networks.

MAN TO MAN
Call 800/ACS-2345 for info
on local meetings of the
American Cancer Society's
support network

US TOO PARTNERS
www.ustoo.com/partners.html

Groups for partners of
men with PCa.

(1) The screening tests are simple, and virtually painless. But not uncontroversial. They can produce false positives, leading to "unnecessary" biopsies. Even if detected by biopsy, a cancer could be slow-growing; many men do die with, but not of, prostate cancer. Some of us may be suffering anxiety or enduring treatments we don't really need. Therefore, argue some doctors, the net disadvantages of widespread screening may outweigh the benefits.

It's an argument I can understand, but not accept. (Try it out on the families of the thousands of men who will die this year of cancer that might have been treated if discovered earlier.) Give me the best information I can get, and let me decide what to do with it. I continue to believe that one of the best gifts you can give yourself or a man you love is a yearly DRE and a PSA test. That goes for all men over 50 (some would say even younger) and for African-American men over 40.

COPYRIGHT 2002 Point Foundation
COPYRIGHT 2002 Gale Group