increase awareness of research and treatments for patients. In 2001, she started
working for PCRI, responding to patient
emails and eventually answering calls for
the organization’s patient help line.
Today, Manarite, who lives in Fort
Myers, Florida, continues to spend time
talking to patients and caregivers in
her role as the executive vice president
of a small nonprofit called Prostate
Cancer International (PCI). She also
organizes patient conferences and
helps manage PCI’s online community
Recently, Manarite spoke with Cancer
Today about some steps that patients
can take to make informed decisions.
C T: What are some of the common questions patients have about prostate cancer?
MANARITE: Most people just want to
understand what they have. They don’t
really have an understanding of what
kind of cancer they have because every
prostate cancer is different. For a lot of
them, that is really all they need to know.
C T: How can people start to understand
more about their cancer?
MANARITE: The first step is getting your
medical records. You have to know your
pathology, your Gleason score and PSA
[prostate-specific antigen] levels, which all
help you to determine the type of prostate
cancer you have, and that’s in your
medical records. Until you know what you
have, you’re not ready to ask questions. If
you know you are low risk, for example,
you can focus your research on low-risk
prostate cancer. I have a phrase I say all
the time: “Medical records speak. Listen
to what they are saying to you.”
CT: How does one understand what
medical records are saying?
MANARITE: Look at the records and
continue to revisit them. Circle five
or 10 big words and Google them. I
invented a five-step program for the
newly diagnosed which breaks everything down. (See
might see lymphadenopathy, for example,
which is a fancy word for an enlarged
lymph node. If you Google it, you’ll get
it right away. Medical records provide
the foundation for your decisions. The
more you know, the more empowered you
become. And that leads to shared decision
making with your doctor.
CT: What other steps can patients take to
become more informed?
MANARITE: Go online and find people
who are going through [the same thing
you are]. Now you are finding people who
are talking about their treatments and
you can plug into existing social net-
works. You can ask questions.
C T: Given that your husband lived for 13
years with metastatic cancer, what are
your thoughts about survival statistics?
MANARITE: The problem is that the
statistics are outdated because it takes
so long to measure them. You can be
looking at data that’s five or 10 years
old. And when doctors talk about these
statistics and underquote people, they
steal the patient’s involvement in shared
decision making. That’s because [unfa-vorable survival statistics] can discourage patients from even bothering to
do research or seek further treatment.
There are always examples of people
living well beyond what they are told.
None of us really know how long we
have, and that’s important to remember
no matter what the numbers say.
—MARCI A. LANDSMANN
PROSTATE CANCER RESOURCES
Prostate Cancer International:
Prostate Health Education Network:
Us Too International: ustoo.org