My doctor has told me that I have
no evidence of disease. What
questions should I ask?
OTIS BRAWLEY: The first question to
ask your doctor is: Based on what’s known
about your cancer—including cancer type
and the genetics of your cancer, if you have
that information—what is the probability
that there will be a relapse?
Having established the likelihood of a
relapse, the next question to consider is:
What is the regimen of surveillance that
should be undertaken to catch a relapse if
one occurs? The recommended surveillance regimen will vary depending on the
particular disease you’ve had. Your doctors
may recommend a CT scan every three
to six months, or a blood test and a chest
X-ray, or something else.
When it comes to breast cancer, for
example, doctors are highly attuned to
relapses in the breast. That’s because
these relapses can often be treated, and
patients tend to do very well. On the
other hand, doctors are less attentive
toward relapses in other parts of the
body after a breast cancer diagnosis,
such as in the lung, liver or bone. That’s
because in the case of a relapse outside
the breast, there’s little evidence that
further aggressive treatment will help
patients to live longer.
While that’s generally true for cancers
in many organ sites, there are exceptions.
In lymphoma, doctors will want to catch
a metastatic relapse early, because catching and treating metastatic lymphoma
early on offers a good chance for prolonged remission.
Finally, ask your doctor what—if
anything—you can do to help lower your
risk of a relapse. For instance, there’s
now evidence that weight gain during
or after treatment is associated with an
increased risk of relapse. Ideally your
doctor will have already talked to you
about diet, exercise and other lifestyle
factors. If not, now is the time.
AFTER CANCER TREATMEN T // CancerCare dispenses advice
for survivors who fear the prospect of recurrence. cancercare.org/
publications/253-coping_with_the_fear_of_recurrence // The Johns
Hopkins Kimmel Cancer Center offers tips to reduce risk of
cancer recurrence. hopkinsmedicine.org/kimmel_cancer_center/
reducing_recurrence.html // The American Cancer Society provides
an easy-to-read guide to life after treatment. cancer.org/health-care-professionals/national-cancer-survivorship-resource-center/tools-for-
I’d like to ensure that any genetic
testing I have done can also
be used to help others. How
do I share this information for
JULIANNE O’DANIEL: A person diagnosed with cancer might have different
kinds of genetic testing done for different
reasons. Genetic testing to evaluate an inherited risk can tell you about genes you’ve
inherited that are related to cancer risk.
BRCA1 or BRCA2 mutations that cause an
increased risk for breast and ovarian cancer
are perhaps the most familiar example.
Nowadays, many patients with
cancer are also undergoing genetic or
genomic testing on the tumor itself.
This kind of testing offers a snapshot
of the cancer process. At a basic level,
cancer is an accumulation of genetic
mistakes that cause otherwise normal
cells to grow out of control. When tests
are performed on the tumor, the goal
is to find specific genes that may drive
its growth and, when possible, to guide
treatment based on that information.
This approach is a type of personalized
or precision medicine.
The results of inherited risk or tumor
tests might be useful to you and your
doctors or other members of your family.
They may also be of interest to research-
ers. Sometimes the labs that do the genetic
testing are interested in collecting your
information for research purposes. Your
lab report may include information about
how you can participate.
If you are interested in seeking opportunities to participate in genetic research,
a good place to start exploring options is
a nearby cancer center, if one is available.
Representatives there are likely to know
about studies being done locally or about
researchers or clinicians who may be
involved in bigger nationwide studies.
Support and education groups are also
good places to explore opportunities. For
example, the Pancreatic Cancer Action
Network offers an online database enabling
patients to share their information so that
researchers can look for patterns that will
lead to improved treatment options and
outcomes for patients. While not specific to
genomeconnect.org offers an online
registry for sharing de-identified genetic and
health information, with the goal of learning
more about genetics and health.
You might also consider sharing a physical sample of your tumor, blood or other
tissue in a registry. Many cancer centers
collect samples for use in a number of different research studies. Often, you won’t
know how your sample will be used—or
even if it will be used at all. It is important
to make sure you’re comfortable with the
possibility that you may or may not hear
If you are interested in sharing your
genetic information for research purposes,
there are many ways to do so. Just don’t
forget that depending on the nature of
your test results, the most important
people to share those results with may be
members of your own family.
GENE TIC TES TING // The National Society of Genetic
Counselors hosts a searchable database of genetic counselors.
www.nsgc.org/page/find-a-genetic-counselor // The National Cancer
Institute provides information on how to donate blood, tissue and other
samples. cancer.gov/publications/patient-education/help-research-donate-tissue // My Cancer Genome offers descriptions of different
types of molecular and genetic tumor testing. mycancergenome.org/