Members of the Cancer Survivors Project
believe it is critically important for all cancer survivors
to be educated and aware of the health risks involved after
cancer treatment. Though not all survivors will experience
late effects, as many as two-thirds of survivors will experience
a late effect of chemotherapy or radiation.
This section highlights guidelines (Long-Term Follow-Up
Guidelines for Survivors of Childhood, Adolescent, and Young
Adult Cancers) that are very helpful for survivors. This
section also highlights other important healthcare information
that we have collected over the years.
About The Guidelines
The Children's Oncology Group released the Long-Term
Follow-Up Guidelines for Survivors of Childhood, Adolescent,
and Young Adult Cancers in 2003 and updated them in 2006. These guidelines, and
the associated lay language "Health Links" are
the first effort to assemble what is known about late effects
after childhood cancer. They are comprehensive and accurate.
As new knowledge becomes available, they will evolve. The guidelines provide far more information for the
average primary care provider (internist, family practice
doctor or pediatrician) than has ever before been available.
Print them out and use them to stay as healthy as you possibly
can. You earned that right.
The direct url is: http://www.childrensoncologygroup.org/disc/LE/default.htm
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A Note To Survivors of Adult Cancers
Survivors of adult cancers will also benefit
from reviewing the Children's Oncology Group's Long-Term Follow-Up
Guidelines and discussing them with their doctors. Unfortunately,
there are as yet no guidelines developed specifically for
those diagnosed as adults.
Keep in mind as you read that children
and adolescents, with developing bone and tissue, are often
impacted by treatment differently than adults. While not
all information pertains to adult survivors, individuals
of all ages may be at risk for late effects and should be
aware of the need to develop an appropriate preventive protocol.
The Guidelines and Your Physician
It is important to find a doctor who
either has experience caring for survivors of childhood
cancer or is willing to learn. Together, you can use the
guidelines to craft a comprehensive health plan. If your
doctor doesn't have a lot of experience caring for survivors,
he or she can use an expert at a long term follow up clinic
( Provider List
) as a consultant. This is common practice.
As most survivors know, it is difficult to find state-of-the-art
follow up care and even harder to get insurers to pay for
it. We hope that these guidelines will help change that
culture.
How To Use The Guidelines
To use the information, compare the Guidelines
with a summary of your treatment for cancer, including what
drugs, surgeries, or radiation types and doses you received.
If you do not have this information, go to http://www.patientcenters.com/survivors/
and click on "Cancer Patient's Treatment Record"
to learn how to obtain it.
The guidelines are organized by treatment
type. For instance, if you received a chemotherapy drug
called cisplatin, you can scroll down until you find that
drug in the column on the left. If you look at the next
column, four different potential late effects are listed.
The next two columns explain risk factors for developing
these specific late effects. (Dosage, age at treatment and
combination of treatments may play a role in risk.)
The next columns list screening evaluations
and how often they are recommended. The next lists (in purple
type) lay language health resources and links for more information.
The final column on the right explains when further testing,
and possibly intervention, is needed.
Additional Guidelines
Memorial Sloan Kettering Cancer Center provides information
for patients and families after cancer on their website.
It is divided into three sections - one for parents, for
adolescents and young adults. http://www.mskcc.org/patient_education/html/47478.cfm.
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