Excerpted from the book,
Ovarian Cancer: Your Guide to Taking Control
by Kristine Conner and Lauren Langford, O'Reilly & Associates,
Sebastopol CA, May 2003.
This article may be reproduced as is by individuals or nonprofit groups
for patient education or support groups, so long as the source of the
material is cited. This article may not be reproduced or adapted for
commercial use, including hospital-wide patient education, without
prior written permission from the publisher.
# 1: Find a gynecologic oncologist.
Gynecologic oncologists are physicians who specialize in
diagnosing and treating cancers that affect the female
reproductive organs, such as the ovaries, cervix, and uterus.
After completing four years of medical school and a residency in
obstetrics and gynecology, they receive additional training that
focuses specifically on the treatment of gynecologic cancers.
If you are now facing surgery for a suspicious ovarian mass that
could be cancerous, you must find a gynecologic oncologist to
perform the procedure. Only a gynecologic oncologist is specially
trained to do the surgery that will be needed if ovarian cancer
is found. Research has shown that women with ovarian cancer who
are treated by gynecologic oncologists tend to fare much better
than those who are not.
If you've already been operated on by a gynecologist or general
surgeon, it is not too late to consult with a gynecologic
oncologist. Gather all of your records together and make an
appointment as soon as you can. The gynecologic oncologist can
assess the quality of your treatment to date and help you plan
out next steps.
To find such a specialist, ask your gynecologist or primary care
physician for recommendations. Alternatively, you can contact the
Gynecologic Cancer Foundation at 1-800-444-4441 to request a copy
of their national directory of gynecologic oncologists. If you
have Internet access, you can search for a gynecologic oncologist
online at Foundation's Women's Cancer Network Web site, at
Your best bet is to find a specialist located at a
major hospital or cancer center that treats large numbers of
women with ovarian cancer. This should be relatively easy if you
live within driving distance of a large metropolitan area.
However, even if you live in a remote area without easy access to
a gynecologic oncologist, you need to find a way to get yourself
to one. It's that important.
# 2: Understand that the quality of your surgery can make a major
It is critical that you work with a gynecologic oncologist
because the quality and thoroughness of your initial surgery can
make a major difference in how you do over the long-term.
Surgery for ovarian cancer is tricky and requires special skill.
Once the gynecologic oncologist confirms that there is a
cancerous tumor on the ovary, she knows that there is a good
chance that some of the cancer cells have spread to other organs
within the abdomen and pelvis (the area from just under your
lungs down to your pubic bone). Her job is to determine where the
cancer has spread and to remove as much of it as is
possible-without making the surgery too risky for you. This
requires skill and a sense of judgment that can only be developed
by operating on many women with ovarian cancer. Study after study
has shown that, the more cancer that is removed, the better the
likelihood of long-term survival.
While it is important to find a specialist you like and trust,
right now your first priority should be to find one who is an
excellent and experienced surgeon. Remember that your decision
isn't permanent. You can always make a switch later if the
relationship does not work out, for whatever reason.
# 3: Read your pathology report.
In most cases, your doctor will be able to inform you right after
surgery whether or not you have ovarian cancer. However, it will
be several days before the pathology report, which is a detailed
report on the findings, becomes available. Another specialist
known as a pathologist will need to spend time examining samples
of the cancer and other tissues removed during the surgery.
Ask for a copy of your pathology report and read it. With a good
medical dictionary and/or Internet access at hand, you should be
able to figure out the meanings of unfamiliar medical terms. If
there is anything you can't figure out, you can discuss it with
your doctor. (Chapter 2 of Ovarian Cancer: Your Guide to Taking
Control should help you as well.)
Although this may seem like an intimidating exercise, there are
many benefits to reading your pathology report. It gives you time
to digest the information firsthand, rather than getting
everything secondhand from your doctor. Among other things, the
report will tell you whether the tumor is benign (not cancerous),
malignant (clearly cancerous), or somewhere in between (a
condition often referred to as Low Malignant Potential or
atypical proliferative tumor); in what part of the ovary it
originated; what the cell type is; and where any evidence of
cancer spread was found. Reading the report also serves as a
crash course in the terminology of ovarian cancer, which will
prove helpful to you over time. Finally, reading this report can
be a powerful way of taking charge of your situation. After all,
the report has to do with your body, and you should have a full
understanding of the situation. Simply requesting a copy lets
your health care team know that you see yourself as a partner in
# 4: Speak up and ask questions.
If this is your first experience with a serious illness, you're
about to get a crash course in the realities of the American
medical system. The most important lesson to learn right away is
that time and resources are limited, and, in most cases, patients
only get as much time, attention, and information as they ask
for. So you want to be one of those patients who knows something
about her diagnosis and asks questions.
You don't have to get a medical degree or spend hours and hours
in the library to educate yourself enough to ask intelligent
questions. This book, Ovarian Cancer: Your Guide to Taking
Control, combined with other information you find on
your own, should be enough to get you started. As you skim
through this book, check out the boxed "Questions to Ask Your
Health Care Team" for ideas about what to ask when discussing
In addition to asking questions about your disease and its
treatment, ask about what services are available for people in
your situation. Most hospitals have a range of programs in place
for people with cancer, or at the very least have close
connections with community-based programs. Whether you're seeking
educational seminars or support groups, financial or
transportation assistance, information about nutrition and
exercise, or something else, ask your health care team what's
available. Again, this information might not be offered to you
unless you ask for it.
# 5: Connect with another ovarian cancer survivor.
If you have done any reading about ovarian cancer, you probably
have encountered a number of pamphlets that begin something like
this: "Ovarian cancer is the most lethal of gynecologic cancers
and the fourth leading cause of cancer death in American women."
Yes, it is true that ovarian cancer is serious, and it does take
many women's lives. But don't lose sight of the fact that there
are many survivors out there, too. As a newly diagnosed woman,
you may find it helpful to speak and/or meet with a woman who is
now a few years out from the same diagnosis you've just received.
In addition to giving advice, she can give you hope that you will
be in her position a few years from now.
There are different strategies you can use for finding such a
person. Your hospital, cancer center, or local cancer
organizations may have organized a "buddy system" that matches
survivors with new patients who have received similar diagnoses.
You might try a support group for women with ovarian and other
gynecologic cancers, which is likely to have some "veterans" in
attendance. You also can try organizations such as the Ovarian
Cancer National Alliance or the National Ovarian Cancer
Coalition, which are headquartered in Washington, DC, and
Florida, respectively, but have contacts in communities
throughout the U.S. If you have Internet access and an e-mail
account, you can join an online support group for women facing
ovarian cancer and post your request there.
#6: Consider clinical trials.
After surgery, most women with ovarian cancer need to undergo
chemotherapy. Chemotherapy is intended to destroy any small
deposits of cancer or microscopic cancer cells that may have been
left behind after surgery. The standard treatment involves
getting two drugs, carboplatin and Taxol, which have proven
highly effective in the treatment of ovarian cancer. Most women
do respond to them and go into remission, a period during which
there is no evidence of any cancer.
At the same time, however, these drugs usually do not offer a
permanent solution: most women can expect their cancer to recur,
or come back, at some point in the future. For this reason, some
women decide that they want to enroll in a clinical trial, or a
research study that involves patients. Some of these trials are
comparing the current standard of care with newer treatments,
such as different combinations of chemotherapy drugs and other
anti-cancer treatments. Many women choose to take part because
(1) they want to help the medical community in its quest to find
a better treatment, and (2) they know that they may receive the
newer treatment, which could end up being more effective than
standard treatment. In fact, the first ovarian cancer patients
who were treated with Taxol received the drug on a clinical
Many people mistakenly believe that clinical trials are for
patients who have exhausted all other treatment options, but that
is not true. You can choose to take part in a clinical trial at
any point in your treatment. In fact, many of the women
interviewed for this book said they would have considered a
clinical trial for their first treatment if they had known that
they were even an option!
If you think you might be interested in a clinical trial, either
now or at some point in the future, start educating yourself
about them. Most trials place limits on the types and amounts of
previous treatments that participants can have had.
One of the best resources for getting started is the clinical trials
section of the National Cancer Institute's (NCI) Web site, at
http://www.cancer.gov/clinical_trials. There you can find more
information about clinical trials and search for NCI-approved
trials specific to ovarian cancer. If you don't have internet
access, you can call the NCI at 1-800-4-CANCER and request
information by mail.
# 7: Get access to a computer with Internet access and an e-mail
If you don't have a computer and it's financially possible for
you to get one, now would be a good time to do so. If you have a
computer in your home but you don't use it very much, now is the
time to start. Depending on your level of computer literacy, you
may need to enlist the help of a family member or friend in this
There is an incredible wealth of information and support for
people with cancer available on the Internet-and it's all free.
While some of the information is of poor quality and downright
misleading, the good far outweighs the bad. All of the major
cancer-related organizations, including those that deal
specifically with ovarian and other gynecologic cancers, have Web
sites that feature quality information and practical advice, the
latest cancer news, and in some cases, online message boards. You
also can use the Web to learn more about doctors and cancer
centers that have expertise in ovarian cancer, access current
thinking about its treatment, and even read about the latest
medical meetings on this disease. You also can connect with other
patients who are online and going through the same experiences at
the same time you are. (See the Appendix for recommended
resources that are available on the Web.)
If you're not able to get computer access on your own, enlist the
help of family members or friends who are comfortable using the
Internet to do the work for you. This is a good specific
assignment to give someone who asks if there is anything they can
do to help. They can always print out whatever information they
find and pass it along to you.
# 8: Tap into ovarian cancer organizations.
There are a number of organizations that are dedicated
specifically to meeting the needs of women with ovarian and other
gynecologic cancers. By tapping into their resources, you'll not
only be able to start educating yourself, but you'll also
discover that you are not alone in this experience.
# 9: Inform your family, friends, and coworkers.
Just a generation ago, people often felt compelled to hide the
news that they had cancer--or at least to hide the real diagnosis
if it involved sexual or reproductive organs such as the ovaries,
cervix, uterus, or breast in women, or the testicles or prostate
in men. There is good reason to suspect that many women who were
said to have "stomach cancer" in the early- to mid-twentieth
century actually had ovarian cancer. People are much more open
about cancer today, but some are still reluctant to share the
news because they have a fear of being stigmatized or pitied or
even isolated by others.
While it will be difficult for you to share the news of your
diagnosis with relatives, friends, and colleagues, it is best to
be open and honest right away, for a number of reasons. First,
you'll become part of the solution in moving cancer out of the
closet and promoting awareness. There is no reason for you to
feel ashamed or embarrassed. Second, there is often a family
connection with ovarian cancer, and your diagnosis may indicate
that other family members are at increased risk-especially if
there are other cases of ovarian and/or breast cancer in the
Finally, and perhaps most importantly, you may open yourself up
to sources of support that you never could have imagined. Maybe
your coworker's aunt is a gynecologic oncologist or a nurse on a
gynecologic oncology unit. Maybe your boss's sister-in-law or
your son's friend's mother is an ovarian cancer survivor. You
never know who might be a source of good information and support
during this time. Also, if people know what you are going
through, they often will take the initiative to help-by taking on
some of your workload, stocking your freezer with prepared meals,
running errands, and so forth.
# 10: If you need professional help in order to cope, get it.
Anyone who faces a cancer diagnosis experiences a certain amount
of depression and anxiety. But for some people, these feelings
become absolutely overwhelming: they can't eat, sleep, or
function at a level that is anywhere close to normal. They feel
completely helpless and simply can't find a way to turn things
around. They become so depressed, so anxious, that they can't
take action in any kind of a productive way.
If you find yourself in this situation, don't be afraid to seek
professional help. Your health care team may be able to refer you
to a mental health professional who specializes in working with
people who have cancer. Many women find it helpful to meet with
such a professional and, if necessary, take anti-depressant or
anti-anxiety medication to help them get through the most
difficult early period. If therapy and/or medications are what
you need to function at a level that is close to normal, you
should not hesitate to seek them out. Your health care team
should not be surprised to hear this request.