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Researching the Late Effects of Cancer Treatment
The reading list found here on the Cancer Survivors Project website is a list of books, journal articles and websites related directly or indirectly to long-term survivorship that we have found informational or inspirational. Before setting out to learn more about late effects it is worth thinking about what you hope to accomplish, how you will achieve your goals and what will happen once you have more information.
Many cancer survivors, including myself, have a good deal of health
anxiety, fears about what might happen in the future. Early on, after
treatment is finished, we worry about relapse. Later we sometimes worry
about the effects of treatment. Many of us would like to push the
thought of cancer completely from our minds and in order to do so we
also have to push out any thoughts of residual illnesses, current
illnesses and symptoms. It is often the case that the moment we start
thinking about a current health problem that thoughts of the cancer will
return and with it many uncomfortable emotions. So we often choose a
state of mind where we are more comfortable by not attending to current
health problems, visiting doctors or learning about the potential of
late effects from our treatments.
This is not always the best course of action, especially when some of
the illnesses that follow after treatment are preventable or treatable
if recognized early. Having good sound information early on can help
with illnesses that may occur later. But having this information can
also increase health concerns and anxieties. I decided that I did better
knowing about health concerns of the future and did even better when I
had a like group of individuals with whom I could share these concerns.
There are some illnesses that may occur, where having early information
may not affect the outcome of the illness. Some people believe they will
be more comfortable about not knowing what these risks or concerns are.
In every case that must be an individual decision. But is difficult to
start learning about late effects and find a means to separate what
information you want to know from information that you find disturbing
or unhelpful. Again for myself, I find that I feel safer and more
empowered knowing, although I have also found that it does help to find
the support and help of people in similar circumstances.
Once you have the information you have to decide how you will proceed.
Finding competent and knowledgeable health care providers who work with
survivors is currently difficult. This web site provides information
about physicians and clinics that see survivors. (Link to Clinic List on this site) Working with physicians who do not know about late effects can be very
frustrating and sometimes makes us feel worse. I once had a cardiologist
who did not believe in the late effects of radiation to the heart. He
also refused to read the medical journal article I provided. At the time
I was very ill, so this was more than frustrating it was life threatening. But because I had educated myself about radiation and cardiac late effects I was able to leave this doctor and find one who did know. Because doctors who know about late effects are somewhat rare, gathering information can lead to frustration and doubts about the nature of care one is receiving.
Obtaining Medical Records
Before you can proceed with reasonable research on late effects it is
extremely helpful to obtain the medical records from your earlier cancer
treatment. Without thorough records research can lead to undue worries
and concerns since there are many variations in treatment, chemotherapy
doses and surgical procedures which will lead to different long term
outcomes. Good medical records will allow you to know things like the
total dosage of chemotherapy agents or the areas of your body that
received radiation and what was protected by shielding.
Researching the Literature
There are two types of literature research. There are the books, essays
and articles that are written for cancer survivors and there is the
medical literature that is written for physicians and other health care
workers. The medical literature tends to be more technical, not always
on point in terms of individual needs and harder to access. It also can
be very narrow, disturbing because of statistical analysis (which does
not take the individual into account) and hard to understand and
interpret without some medical background. But because there is so
little information (although this is changing) on late effects this may
be the best resource for helpful information. I have found that most of
the articles and books published either by survivors or written by those
interested in cancer survivors focus on the positive aspects of survival
and provide little helpful information on late effects. There are a few
exceptions. (see Childhood Cancer Survivors by Nancy Keene, et al)
How to Research the Medical Literature
The late (and greatly missed) Steve Dunn's web site details the steps required to do medical lierature research.
(http://www.cancerguide.org/research.html)
However, it is worth noting that his own research was conducted in a
brief period of time because he was researching options for a medical
crisis. For those who are not in the midst of a medical crisis and don’t
need immediate information, many large public libraries can help with
medical research. They may not do a data search for you but they will
and can acquire medical journal articles that you may have identified
through earlier searches. This is usually done for a small fee. If they
will do a search it is helpful if you can provide the librarian with
research terms that will help her/him hone the research process. Again
knowing as much as you can about the earlier cancer and treatment will
be key to future research success.
PUBMED is an online data bank for medical literature. Any individual can
use this service and read the abstracts (if any) attached to the
article. Relevant articles can be acquired through the website (usually
expensive) or with a complete bibliographic reference requested through
a public library. Sometime is takes a bit of experimentation to find
the combination of words and phrases that contribute to the best
outcome. For instance ‘cardiac late effects Hodgkin’s Disease’
eliminates one of the better current articles on this problem. When I
eliminate the ‘late’ from my search I find more articles and in
particular one that is very helpful. Since all of these searches are
free and simply a matter of my time it pays to experiment with words and
phrases. PUBMED also offers a tutorial that will help you learn how to
use this search engine and will help you develop a research technique
that will hopefully yield the answers you are looking for.
Written by Linda Zame, DMH (moderator of ACOR’s Long-Term Survivors e-mail list).
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