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Ovarian Cancer

Quality of Life Issues


The information in this booklet is for
awareness and educational purposes
only. This information is not intended as
endorsement for treatment, tests, trials or
resources. This booklet, or portion thereof,
shall not be reprinted or modified in any
way without the written permission of the
National Ovarian Cancer Coalition, Inc.
Introduction

Quality of life issues are an extremely important part of


treatment and post-treatment screening in women with
ovarian cancer. While these women are fighting for their
lives, they are also concerned about being bald, feeling
sexy, and overcoming fatigue. Women want to know the
effects of therapy on quality of life (QOL), and deserve to
have this information.
This booklet provides timely and practical information
about quality of life concerns.
We hope it will be a valuable resource to women with
ovarian cancer, their loved ones, and the healthcare team.

Contents
Treatment-Related Side Effects. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
Depression, Anxiety and Distress. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Resources. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
Financial Concerns. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Sexuality/Intimacy/Relationships. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
End of Life Concerns. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
Complementary and Alternative Medicine. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
Your Role in the Decision-Making Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
Support Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
Treatment-Related Side Effects

Treatment for ovarian cancer usually in-


volves surgery followed by chemotherapy.
The content of the diary may
You may experience physical, emotional,
include answers to questions that the
and/or psychological side effects related to
healthcare team will want to know:
your cancer and the treatment of your spe-
cific disease. The key to proactively manag- • What type of side effect are you
ing side effects begins with good communi- experiencing?
cation with the healthcare team. • When does it occur?
Although your doctor or nurse may not ask • How frequently does it occur?
you about specific side effects, it is extreme- • How severe is it when it happens?
ly important for you to bring them to the
• How bothersome is it in your
attention of your healthcare team. Often
day-to-day life?
patients under report side effects because
they do not want to be viewed as weak or • Does anything make it better or worse?
as complaining. Some side effects may be • How have you tried to manage
easily controlled or even stopped; others the problem?
may be more serious in nature and require
additional supportive care. Your job is to
report the side effects. Your healthcare team Side Effects from Surgery
will then work with you to help treat and Surgery is the cornerstone of most treat-
hopefully resolve them. ment for ovarian cancer. It is important to
recognize that some surgical side effects
The best way to communicate can significantly impact your emotional and
to your healthcare team is by physical quality of life.
providing specific information
Loss of Fertility
about bothersome side effects. In addition to dealing with a new diagnosis
Keeping a diary is a good way to of cancer, loss of fertility due to surgery for
make sure that information about ovarian cancer can be one of the most dif-
side effects you experience are ficult issues that women face. Women who
written down in one place. have not completed childbearing or who
have not yet begun to start their families may
experience the loss of fertility in different
ways. It is important for these women to
have strong support systems such as family
members, and counselors. Additionally,
support groups such as Resolve: The National
Infertility Association (www.resolve.org) and
Fertile Hope, a non-profit advocacy group
that tries to improve healthcare and insur-
ance coverage for cancer-related infertility
(www.fertilehope.org), offer resources to help
women and their partners.
2
Surgical Menopause Bowel Obstruction
Surgery for ovarian cancer may result in Bowel obstruction due to surgery happens
what is called a “surgical menopause.” Unlike when scar tissue grows into the intestine
natural menopause in which menopausal causing the intestine to become blocked.
symptoms may occur gradually over time, This can result in severe constipation,
women experiencing surgical menopause abdominal cramping, nausea and vomiting.
may find that these symptoms are more im- These symptoms need to be reported to
mediate and profound. your doctor immediately; he/she will deter-
In addition to menopausal symptoms, women mine whether simple dietary changes might
need to be aware of the increased risk of help relieve the obstruction or whether more
heart disease and osteoporosis resulting from aggressive medical or surgical interventions
the loss of estrogen. Because the decision to may be necessary.
use hormone replacement therapy needs to A bowel obstruction can also occur due to
be made based upon a woman’s individual involvement of the bowel with tumor. In ad-
symptoms and health concerns, you should dition to nausea and vomiting, patients can
check with your doctor to see whether hor- also experience severe pain and/or constipa-
mone replacement therapy is right for you. tion. Report these symptoms to your doctor
Other things that you can do to minimize immediately. Sometimes a low residue/low
your risk of heart disease and osteoporosis fiber diet can help. In other cases, surgery
include doing weight-bearing exercise on a may need to be performed. The decision for
regular basis, eating a healthy and balanced surgery will depend on a variety of factors
diet, and taking calcium supplements. More including how you feel, what your imaging
information is available from “Frequently studies look like, the status of your cancer,
Asked Questions about Hormone Therapy” and how you respond to less aggressive
published on the American College of interventions.
Obstetricians and Gynecologists’ website
Ostomy
www.acog.org.
Undergoing surgery for an ostomy can be a
Sexual Concerns difficult experience. Whether this change in
If you have experienced loss of desire for your life is temporary or permanent, it still
sex, you are not alone. This is one of the takes some getting used to. Most hospi-
most common sexual problems of women tals have ostomy nurses to help patients
with ovarian cancer. For more on this topic learn about care and management of their
please refer to the Sexuality/Intimacy/ ostomy. Check with your enterstomal (ET)
Relationship portion of this booklet. Another nurse to see if he or she knows a patient with
excellent resource is the booklet “Ovarian an ostomy who might be willing to talk with
Cancer: Sexuality and Intimacy,” available you. Talking with someone in the same situ-
from the National Ovarian Cancer Coalition ation can often help address your concerns.
(1-888-OVARIAN, www.ovarian.org). Another resource is the United Ostomy As-
sociation (1-800-826-0826 or www.uoa.org).

Ovarian Cancer Quality of Life Issues 3


Chemotherapy Side Effects Gastrointestinal Side Effects
When people consider the side effects of The gastrointestinal (GI) tract encompasses
cancer treatment, most probably think the mouth, throat, stomach and small and
about chemotherapy-related side effects. large intestine.
Chemotherapy is medication that is designed Chemotherapies that affect the GI tract may
to attack the fast-dividing cancer cells. result in problems with nausea, vomiting,
While this is good for attacking the cancer and loss of appetite. Nausea and vomiting
cells, chemotherapy medications can also have been found to be two of the most
attack healthy cells in your body, resulting bothersome side effects caused by chemo-
in adverse side effects. therapy. Fortunately, over the past couple of
If you are scheduled to undergo chemo- decades, many advances have been made in
therapy, be sure to ask your doctor and/or medications used to treat these side effects
nurse about what types of side effects your (these medications are called antiemetics).
chemotherapy may have. Be aware that While some chemotherapy can cause nausea
there are many kinds of chemotherapy – and vomiting within the first 12-24 hours,
and each has its own particular side effect other chemotherapy regimens may cause
profile. delayed nausea several days after chemo-
The side effects listed in this section therapy is administered. Although most
include only some of the most commonly- women routinely receive antiemetics during
occurring ones associated with chemo- chemotherapy, you should check with your
therapy used to treat ovarian cancer. doctor or nurse just to make sure you are.
You should also make certain you take the
medication at the right time; antiemetics
are given prior to chemotherapy and some
may need to be taken up to a few days after
treatment.
4
It is particularly important to let your doctor Taste Bud Changes and Loss of Appetite
know if the specific antiemetic medication Some women find that their sense of taste
prescribed for you does not work, as several changes as a result of chemotherapy.
kinds of antiemetics are available and may Common changes include a sour or metallic
work better for you. Some of the medications taste in the mouth. To help manage this side
your doctor may prescribe to treat nausea effect consider sucking on mints or hard
and vomiting include Decadron®, Compazine®, candy, and using plastic utensils instead
Ativan®, Kytril®, Zofran®, Aloxi® and Emend®. of metal.
Finally, make sure you drink plenty of water If you are experiencing loss of appetite,
before each chemotherapy treatment as this try avoiding processed foods, drink plenty
can also help minimize your risk of nausea of water, and try nutritional supplement
and vomiting. beverages.
Chemotherapy may interrupt your normal Let your healthcare team know about appe-
bowel function, resulting in either constipa- tite changes and subsequent weight loss or
tion and/or diarrhea. Although some women weight gain. Most hospitals have registered
are embarrassed to discuss these side effects dieticians and nutritionists on staff, so
with their doctor, it is important to let your consider setting up an appointment to work
healthcare team know since both can result out a good diet plan.
in major problems if not treated. As with any Several helpful publications are available
side effect, it is advised that you note when as well. Betty Crocker’s Living with Cancer
you experience it (e.g. the day of chemo- Cookbook: Easy Recipes and Tips Through
therapy, the day after, etc.). This may help Treatment and Beyond (2002) was written
your doctor determine what can be done to by two gynecologic oncologists and a
minimize or eliminate the side effects. nutritionist. The National Cancer Institute
For women experiencing constipation, (www.cancer.gov) and the American Cancer
experts recommend a diet high in fiber with Society (www.cancer.org) also provide
generous fluid intake (water, fruit juices) information about eating and nutrition for
along with regular exercise such as walking. cancer patients.
If these tips are not helpful, constipation
may be relieved by taking laxatives such Peripheral Neuropathy
as Senokot® or Colace®. Use caution when Peripheral neuropathy occurs when a group
taking laxatives since overuse may result in of nerves is either damaged or injured.
diarrhea. For women experiencing diarrhea, Symptoms of this side effect may involve
check with your doctor to see if you should pain and numbness or heaviness in the
reduce your dietary fiber intake and whether hands/fingers and feet/toes. Some women
you should take anti-diarrhea medications. have described the feeling as “pins and
Make sure you replace your fluids since needles.”
severe diarrhea can result in dehydration.
Use caution when taking medications since
overuse may result in constipation.

Ovarian Cancer Quality of Life Issues 5


If you experience this side effect, you may
notice that you have increased difficulty
doing certain tasks such as picking up or If you are experiencing difficulty
holding small objects, sewing, writing, walking or with balance, suggestions
buttoning clothes or going up or down to make your living arrangements
stairs. Some women have reported ringing safer during this time include:
in the ears or difficulty hearing (ototoxic • Provide adequate lighting in your
side effects), while others have noticed house
blurred or double vision.
• Leave lights on at night
Let your doctor or nurse know about any
• Cover steps/stairs and hard floors
symptoms you experience since the sever-
with non-skid materials
ity and intensity of peripheral neuropathy
varies with each woman. In particular, tell • Minimize clutter in hallways and
your healthcare provider if you experience stairways
burning or pain, and if you have difficulty • Tape down edges of area rugs
with daily activities. • Put a non-skid bathtub mat inside
For some women, peripheral neuropathy your bathtub
becomes more severe over time (and may • Avoid wearing shoes that make
increase as more cycles of chemotherapy walking difficult
are given); in other women, the symptoms
• Check your hands and feet daily to
gradually decrease or disappear altogether
look for open sores/irritation
6-12 months after chemotherapy is com-
pleted. While doctors have not yet found
a way to prevent peripheral neuropathy,
there are some things that may be done to Chemo-Brain
decrease the symptoms. Chemo-brain refers to what some women
Talk to your doctor to learn more about describe as forgetfulness, “slowed” thinking,
the following: difficulty thinking of words and names, and
• Glutamine® difficulty writing. Some women experience
• Antihistamines chemo-brain during chemotherapy; others
• Warmth and massage find that it may continue even after chemo-
therapy. Most women indicate that this side
• Anticonvulsants
effect is temporary and that it eventually
• Walking
goes away. Experts do not fully understand
• Arthritis medications why chemo-brain occurs, but it may be
• Amifostine® helpful to keep a diary to note if, when and
• Topical patches or creams how you experience this side effect.
- such as capsaicin or lidocaine
• B vitamins
• Acupuncture
• Antidepressants

6
Alopecia temporary and can be managed effectively.
Many chemotherapies affect the cells that Counts go down after chemotherapy is given
make hair follicles. As a result, you may no- and tend to normalize by the time your next
tice that you begin to experience hair loss chemotherapy cycle is scheduled. If counts
approximately 3 weeks after you receive do not recover in time for your chemothera-
the first cycle of certain chemotherapies py appointment, your doctor may delay your
such as paclitaxel. You may find that your treatment until the counts return to normal.
scalp tingles or itches, and that your hair Different types of myelosuppressive side
falls out in large amounts. In addition to hair effects can occur; each can have potentially
on your head, alopecia may result in loss of serious health consequences so make sure
all body hair (eyelashes/brows, pubic hair, you understand when it is necessary to con-
arms/legs). tact your healthcare team.
Although your hair usually starts to grow Neutropenia refers to a significant decrease
back several months after you finish chemo- in white blood cell count. Since white blood
therapy, it sometimes starts growing back cells help your body fight infection, being
after 5 or 6 cycles. This does not mean that neutropenic can make you more prone to
the chemo is not working. Some women infection. If you are neutropenic, it is a good
find that their “new” hair is a different tex- idea to avoid close contact with people who
ture and color. have been sick with a cold or the flu as well
Unfortunately, hair loss is one of the most as crowded areas such as airplanes.
visible signs of cancer treatment and no If you experience fever, you should immedi-
therapy exists to prevent this from occur- ately contact your doctor. If your white cell
ring. Some women will cut their hair shorter count drops to extremely low levels, your
or shave their hair off in advance. You may doctor may put you on antibiotics to help
decide to wear a wig, scarf or cap during fight infections as well as give you injec-
chemotherapy. Or, you may decide that you tions of medications such as Neupogen®
feel more comfortable wearing nothing on or Neulasta® that stimulate your white cell
your head. The American Cancer Society production.
and National Cancer Institute offer excellent Anemia refers to a significant decrease in
patient materials to help women manage red blood cell counts. Since red blood cells
hair loss during cancer treatment. transport oxygen to healthy tissues in your
body, women who are anemic may feel
Myelosuppression
short of breath after light activity and can
This term refers to the decrease in blood cell
tire easily. If you are anemic, you should take
production by the bone marrow. Chemo-
time to rest and recover for several days
therapies can cause temporary decreases
following chemotherapy. Talk to your doctor
in white and red blood cells and platelet
counts. Chemotherapy given to many
women with ovarian cancer causes myelo-
suppressive side effects. These are usually

Ovarian Cancer Quality of Life Issues 7


about including a diet of iron-rich foods or One theory is that the decrease in physi-
taking an iron supplement. If you find that cal activity that occurs when someone is
fatigue is preventing you from doing many diagnosed with cancer leads to a physical
of your normal activities, ask your doctor deconditioning. Because you’re not using
about Procrit® or Aranesp®, medications them as much, your muscles, heart, and
to help your bone marrow produce more lungs become weaker and make it more
blood cells. Some doctors may recommend difficult for you to do the same amount of
blood transfusions to help boost red blood work that you could do easily before cancer.
cell counts, as it takes several weeks to see This is probably why moderate exercise
results from Procrit® or Aranesp®. decreases fatigue for some people.
Thrombocytopenia refers to a decreased If you are experiencing fatigue that inter-
level of platelets. Platelets help the body feres with your usual activities and is dis-
when bleeding occurs via clotting. If you are tressing to you, discuss this with your doc-
thrombocytopenic, avoid cuts and scrapes/ tor. He or she can evaluate whether some
bruises. Your doctor will advise you to avoid treatable condition, like anemia, thyroid
medications containing aspirin. If your issues, poor pain control, sleep problems,
platelet count drops to dangerously low or depression might be causing the fatigue.
levels, your doctor may recommend platelet If any of these conditions are present you
transfusions to help your body restore its may find that treating them improves your
platelet levels. fatigue as well.
Once you have done all of the above and
Fatigue
still find you have no energy, there are a
Fatigue is an extremely common problem
number of other things you can do to cope
for cancer patients and survivors. Research
with or decrease your fatigue. One strategy
has shown that 72% to 99% of all cancer pa-
is called energy conservation.
tients report problems with fatigue. People
with cancer experience fatigue much dif-
ferently than do healthy individuals. People
with cancer describe fatigue as a chronic, The following energy conservation
unpleasant, distressing, life-and-activity tips may be helpful to you:
limiting tiredness throughout the day that is • Identify ways that necessary activities
not relieved by sleep and rest, while healthy can be done using less energy (e.g.,
people view fatigue as a normal, even pleas- sitting while showering or preparing
ant part of daily life. food)
The causes of cancer-related fatigue are • Schedule tasks that take the most en-
not well understood. In all likelihood, it ergy at times of the day when you have
is caused by multiple factors. Sometimes the most energy
cancer treatment can cause anemia or other • Set priorities, eliminate non-essential
toxicities that can lead to fatigue, but not activities, and delegate tasks to others
all fatigue is explained by easily identifiable when possible
medical reasons.

8
Some women find that stress
management strategies Starting an exercise program is not
easy, especially if you have a lot of
described in the Depression,
fatigue. Following are some tips to get
Anxiety and Distress section are you started:
helpful in coping with fatigue. • Talk to your doctor about exercise.
Several studies have shown that exercise is before you start to make sure you don’t
helpful in reducing fatigue. Most of these have any health conditions that might
studies have been conducted among breast interfere with exercise. He or she may be
cancer patients and survivors, but evidence able to refer you to a physical therapist
shows the benefits of exercise for people or a physical medicine specialist who can
with other types of cancer as well. help you develop an appropriate exercise
program.
Before starting any exercise, • Start slow! Exercise at a moderate pace
for a short period of time. Maybe you feel
talk to your doctor to make you can only exercise for 2-3 minutes at
sure the type of exercise you a time – that’s OK! Schedule 2-3 minutes
want to do is right for you. of exercise every other day, and gradually
increase the length and the frequency of
For example, if you have bone metastases the exercise. Keep in mind that you don’t
or severe peripheral neuropathy, your doc- have to do your exercise in one long ses-
tor may advise you to avoid weight-bearing sion; exercising in short bouts through-
exercise like walking. out the day also improves fitness.
If you experience a lot of fatigue, moderate • Wear appropriate, comfortable clothes
intensity exercise, such as brisk walking, is and shoes while exercising, and drink
probably better than very intense activity. plenty of water.
If you are exercising at a moderate pace, • Set realistic short and long-term goals.
you will notice your heart beating faster for the amount of exercise you want to
and your breathing rate increasing, but not do, and reward yourself for meeting your
so much that you are unable to talk. One goals. For example, if your goal is to do
guideline for a moderate pace is that while a 5-minute walk on four days this week,
you are exercising you should be able to reward yourself with something like a
talk but not sing. relaxing bubble bath or renting your
favorite movie.
• Find an exercise buddy. Having some-
one who can encourage you when you
don’t feel like exercising can provide that
extra push you need to help you achieve
your exercise goals.

Ovarian Cancer Quality of Life Issues 9


Depression, Anxiety and Distress

“ I just don’t seem to enjoy things like I find a confidante who can really listen to you
used to. I used to love a good movie – talk about how you are feeling, rather than
now they all seem to bore me and I just telling you how you should be feeling!
feel like sleeping.” In addition to talking about your distress, a
number of other self-help techniques may
“ I can’t seem to stop thinking about the
help you deal with distress.
cancer and what might happen. Even
when I’m with other people and I’m Here are some for you to try:
having a good time, worries about the
Relaxation exercises: There are several
cancer pop into my head.” relaxation techniques that, with practice, can
If these thoughts sound familiar to you, help relieve your anxiety and improve your
you are not alone. Having ovarian cancer mood. Relaxation exercises generally involve
is a stressful experience, and the ways you deep breathing while imagining pleasant
have previously coped with problems may scenes or memories (guided imagery) or
not work as well when you are confronting systematically tensing and relaxing muscles
a serious disease and difficult treatment. (progressive muscle relaxation). There are
Many women with ovarian cancer report a number of books and tapes that can help
psychological distress; studies have found you learn and practice relaxation exercises.
higher levels of anxiety and depression Exercise: Moderate exercise like brisk walk-
among women with ovarian cancer than ing can also be helpful in managing stress
among women who do not have cancer. and improving mood, but be sure to talk
to your doctor to make sure that exercise is
What Should You Do? appropriate for you. See the section on
A good place to start is to talk about your fatigue for more information on exercise.
worries and distress with a good friend Get out and do something fun! Scheduling
or family member, or perhaps, you might activities you enjoy, even when you’re feeling
consider joining a cancer support group. down, can help improve your mood by dis-
While you probably have many friends who tracting you from the stress you’re experienc-
want to help you, keep in mind that not ing. The activities don’t have to be compli-
everybody is a skilled listener. Some people cated or tiring, just simple things that you
may try to tell you that you shouldn’t focus usually enjoy but haven’t done as much since
on your problems, that you need to have a you got sick. For example, you could meet
positive attitude and be hopeful. a friend for a cup of coffee, call a friend you
While hope and a positive attitude are haven’t seen in a while, or go to the store and
good things, it is important to address the buy yourself some flowers. Picking activi-
underlying issues that are contributing to ties that would force you to do something
your negative mood, to help you gain more intentional and active will be more likely to
control over your feelings. All of your feel- improve your mood than passive activities
ings about your cancer experience are real such as watching TV. Put your activities on a
and valid, including negative feelings. Try to calendar or schedule so that you make sure
you do them.

10
When More Help Is Needed to you. For example, if you are feeling so
Sometimes women with ovarian cancer anxious about leaving the house that you
experience distress that is serious enough can’t work or participate in social activities
to warrant treatment. This is particularly you usually enjoy, you may have an anxiety
true for women who have had episodes of disorder that needs further treatment.
depression or anxiety in the past, or whose Many cancer patients have found psycho-
physical symptoms are severe. therapy to be helpful; sometimes talking
If you find you are experiencing symptoms with an objective professional can be just the
like sadness and depression, feeling worth- thing to help you gain the perspective and
less, a lack of enjoyment of activities that strength you need to cope with your par-
you usually find pleasurable, excessive cry- ticular situation. Your doctor may be able to
ing, or feeling sad and depressed most days recommend someone; you also can consult
for two weeks or more, you should discuss the websites listed in this booklet. There are
this with your doctor or a mental health proven treatments to help people deal with
professional. depression and anxiety; both medication
and psychological or behavioral treatments
have been found to be effective in relieving
distress in cancer patients.
If you find yourself thinking
about hurting yourself or that If your doctor prescribes medication, be sure
to take the medication as directed by your
you would be better off dead, doctor. These medications often take six weeks
you should talk to your doctor or or more to start to work. If you find after giv-
call a local mental health crisis ing the medication time to work, that it is
center right away. not helping you or it is causing undesirable
side effects, talk to your doctor. There are
many different kinds of medication to help
You should also seek help if you find that people with symptoms of psychological
your worries or any symptoms you are hav- distress. Sometimes it takes a little while to
ing are interfering with your usual activities find the one that works best for you.
or your relationships with the people close
Ovarian Cancer Quality of Life Issues 11
Resources

The following list includes self-help books Websites


that may assist in teaching skills to manage
www.apos-society.org
stress. If you are experiencing clinical levels
The website for the American Psychosocial
of distress, you may need to see a mental
Oncology Society (APOS) offers a link to a
health professional. The websites listed
referral helpline for individuals facing can-
provide information about qualified mental
cer and for caregivers. The referral program
health professionals in your area.
provides local counseling and support ser-
vices throughout the United States, includ-
Stress Management/Relaxation
ing psychiatrists, psychologists, nurses, and
The Relaxation & Stress Reduction Work- social workers trained to manage cancer-
book (August 1998). By Martha Davis, Eliza- related distress.
beth Robbins Eschelman, Matthew McKay,
www.aamft.org
Matt McKay, Beth Eshelman (4th workbook
The website for The American Association
edition).
for Marriage and Family Therapists provides
Full Catastrophe Living: Using the Wisdom access to a searchable database for locating
of Your Body and Mind to Face Stress, Pain, licensed marriage and family therapists.
and Illness (1990). By Jon Kabat-Zinn. Under the heading “Public,” click on “Locate
Your Perfect Right: A Guide to Assertive a Family Therapist Near You.”
Living (October 1995). By Robert E. Alberti www.nationalregister.org
& Michael L. Emmons (25th anniversary This website for the National Register of
edition). Health Service Providers in Psychology
The Feeling Good Handbook (May, 1999). By provides a searchable database for locating
David Burns (revised edition). doctoral level psychologists throughout the
United States and Canada. After accessing
Learned Optimism (March 1998). By Martin
the website, click on the link under “Find a
E. P. Seligman (reissue edition). Also avail-
Psychologist.” Begin searching by clicking
able in audio cassette.
on “Public.”
Mood Management
Mind over Mood: Change How You Feel by
Changing the Way You Think (1995). By
Dennis Greenberger & Christine Padesky.

12
Financial Concerns

Financial concerns can be a major source of involves receiving chemotherapy, consider


stress for women diagnosed with ovarian getting your chemotherapy on Fridays so
cancer. Financial issues can be related to that you have the weekend to rest and
employment, health insurance and travel recover.
and hotel expenses if you choose to travel You also may want to request working fewer
for some of your treatment. There may be hours on the Monday and Tuesday following
some steps you can take to minimize some your chemotherapy and making up the time
of the financial stress. in the weeks between chemotherapy cycles
or at a later time. Requests for reasonable ac-
Employment commodations at work may include modify-
If you are currently employed, you may
ing work schedules to include flexible hours;
wonder how your diagnosis and treatment
time-off for medical treatments; temporary
will affect your job and what impact this
part-time work; job sharing; taking leave
may have on co-workers. A diagnosis of
without pay; or working from home. Your
cancer is considered a “disability” under the
employer will need to evaluate your particu-
1990 Americans with Disabilities Act (ADA).
lar situation to determine what can be done.
This law covers employees of the legislative
branch of the U.S. Government, state and It is a good idea for you to check with the
local government entities, employment personnel or human resources department
agencies, labor unions and employers with at your workplace to find out more about
more than 15 employees. specific employment policies that may apply
to you. You should be aware that certain
situations exist in which the employer may
Under the ADA, employers are not be required to provide accommodations.
required to provide reasonable In addition, small employers are not subject
to federal law (in these situations, check with
accommodation to employees
your state’s agencies, congressional repre-
with known disabilities, as sentatives or senator to find out more about
long as they are qualified for what policies are in place to protect you).
the job. The ADA requires the For more information on the ADA, check
employee to notify her employer with your local American Cancer Society
of her disability and the need for office or on the web at www.cancer.org or
accommodation in the workplace. the National Coalition for Cancer Survivor-
ship at www.canceradvocacy.org.
Another federal law is the Family and
Think about what kind of accommodations Medical Leave Act of 1993 (FMLA). This law,
you may need at your workplace. Most along with certain state laws, stipulates that
women will need time to recover from ini- employees may take up to 12 weeks of
tial surgery for ovarian cancer. Many women medical leave during a 12-month period.
with newly diagnosed ovarian cancer will The leave can be taken all at once or can be
also receive chemotherapy every 3-4 weeks taken in different time allotments, depending
for several months. If your treatment plan
Ovarian Cancer Quality of Life Issues 13
on what the employer and employee agree Your family member caregiver should
upon. The FMLA does not require that em- check with the personnel/human resources
ployees receive salaries during medical leave; department at his/her workplace for more
the law does provide that employees retain information.
their job positions and all benefits. Some If you are considering taking family medical
employers may also provide other employee leave, keep in mind that the FMLA leave
benefits during this time. Certain eligibility of 12 weeks total will not cover the entire
requirements exist for FMLA so check with time necessary for surgery and standard
the personnel/human resources department chemotherapy for most women with newly
at your workplace to find out more details diagnosed ovarian cancer (recovery from
about your company’s leave policies. surgery can take up to 4-6 weeks, and 6 cy-
If you have a caregiver who is a family cles of chemotherapy typically encompass-
member (defined as a spouse, parents, or es 18 weeks). If possible, see if you can take
adult children), he/she may also be eligible your medical leave in 1-week increments
for family medical leave. You may want to structured around your chemotherapy ap-
plan on having your caregiver’s assistance pointments (day of treatment + several days
while you are recovering from surgery and/or to recover). This strategy may allow you to
during the times you receive chemotherapy. more effectively use your medical leave.

14
Insurance Since understanding and working with
A lot of attention has been given to concerns insurance plans can be extremely time-
about health insurance coverage for indi- consuming and detail-oriented, ask a family
viduals diagnosed with cancer. Specific areas member to help you manage this process;
of concern include restrictions on where you it is often helpful to have another person
can receive your cancer treatment, maxi- review the paperwork.
mum dollar amount of insurance coverage
provided, and fear of losing coverage.
Following are recommended ways
The key to managing these concerns is to
to help you manage your insurance
understand your insurance plan.
concerns:
There are some things you can do to help
• Submit claims in a timely fashion
de-mystify confusion about health insurance.
• Keep accurate records
If you have insurance coverage through
a group health insurance plan offered by • Use an accountant’s worksheet to keep
your employer (or your spouse’s employer): records straight

• Ask your plan’s administrator or benefits • Make copies of ALL bills


representative for materials (e.g. booklet or • Submit your claims in the correct order
website) that describes your insurance plan if you are covered under 2 plans
• Obtain a copy of the plan from the insurer • If your claim is denied:
• Read these documents very carefully, paying - Send the claim back again with cop-
particular attention to exclusion policies ies of documentation
• Find out whether special requirements exist, - Do not take no for an answer (persis-
i.e. pre-certification, claim submissions, extra tence may pay off – could be miscod-
costs for going out-of-network for doctors or ing or verification that appropriate
hospitals, inpatient vs. outpatient coverage referral was made)
for certain treatments - Make sure your total charges agree
with the total amount of your bill
• Find out whether clinical trials are covered
(understand your plan’s definition of “experi- - If needed, justify doctor’s charges
mental” or “investigational” treatment) (ask MD to write a letter)
- Ask for formal review of claim
• Be aware that federal and state laws exist
to protect you from losing your insurance - Know which benefits are mandated
coverage by your state
- Use customer helpline, get the name
If you have insurance through a government-
of service representative/claims
sponsored program such as Medicare or
examiner and the date of your call
Medicaid, you can log on to www.cms.hhs.gov
or call (410) 786-3000 for more information. - Consider assigning these tasks (what
to do if claim is denied) to a family
If you do not have insurance coverage member to minimize your stress
call the American Cancer Society office
for available resources: 1-800-227-2345
(1-800-ACS-2345).
Ovarian Cancer Quality of Life Issues 15
Many top cancer centers are accustomed to
Keep a notebook where you can jot out-of-town patients and have personnel
down questions that come up, along on staff who assist with travel and lodg-
with the answers you receive and the ing information and arrangements. These
person’s name/affiliation who answers cancer centers often have special arrange-
your questions (e.g. insurance repre- ments for discounted airfare, car rental, and
sentative, benefits representative, etc). hotel rooms. Some centers even have onsite
housing available.

Other resources include:


Social Security Disability Insurance
Some women may be unable to work due The American Cancer Society Hope
to progression of their ovarian cancer or Lodge Program
because of continuous cancer treatment. 1–800–227–2345 (1–800–ACS–2345)
These women may be eligible for Social www.cancer.org
Security Disability Insurance (SSDI).
National Association of Hospital
The SSDI pays monthly disability benefits Hospitality Houses
to individuals who meet strict eligibility 1-800-542-9730
criteria. Specifically, Social Security must www.nahhh.org
determine a woman’s inability to work as
Delta SkyWish
she did before due to her ovarian cancer
in conjunction with the United Way
as well as her inability to work for at least
1-800-892-2757, ext. 285, M-F 9am-5pm
12 months. Monthly benefits are based
upon the individual’s income history. To Air Care Alliance
learn more about Social Security Disability 1-888-260-9707
Insurance and whether you qualify, contact www.aircareall.org
Social Security at 1-800-772-1213 or visit
the website at www.ssa.gov and click “Dis- Corporate Angel Network
ability and SSI.” 1-914-328-1313, M-F 8:30am - 4:30pm EST

Mercy Medical Airlift’s National Patient


Travel and Lodging Air Transport Helpline
If you need to travel beyond your local 1-800-296-1217
area to receive treatment or get a sec- www.patienttravel.org
ond opinion, costs associated with travel
(gasoline, airfare) and lodging (hotel and
food) can add up quickly. If geography is a
If you are considering a clinical trial
limiting factor and there are no gynecologic
but the location of the trial is far from
oncologists in your area, you may have to
where you live, ask the sponsor of the
travel to have your surgery performed by a
trial or check with your insurance plan
gynecologic oncologist. Your gynecologic
to see if either will cover part/all of
oncologist may be able to coordinate your
your travel costs.
chemotherapy with a medical oncologist in
your hometown.
16
Sexuality/Intimacy/Relationships

For many women with ovarian cancer, life the American Cancer Society at 1-800-ACS-
after cancer includes learning to cope with 2345). The book Sexuality and Fertility After
serious, long-term sexual problems. In a sur- Cancer by Leslie R. Schover, Ph.D. (John Wiley
vey of 200 survivors of ovarian cancer, more & Sons, 1997) is also an excellent resource.
than half of the women reported that their
sex lives had been negatively affected by
cancer or its treatment, and 75% described
their sex lives as poor to adequate. Women Communicating your feelings
with ovarian cancer report a range of sexual about your diagnosis and
difficulties; decreased libido, vaginal dryness, throughout your treatment
and pain during intercourse are the most process is important.
prevalent. These problems can arise from
multiple causes, including surgical or treat-
ment-related menopause, disturbed body
image, and increased psychological distress. A diagnosis of ovarian cancer will affect a
woman’s relationships with members of
Many patients are reluctant to ask their her family.
healthcare team questions or mention sexual
problems. Gather up your courage and ask Family and friends can be an important
anyway! Your healthcare provider can pro- source of emotional support. If you have
vide information about the possible causes children, you may wonder how much about
of sexual problems and changes, and may your diagnosis and treatment to tell them.
have suggestions for how you can overcome The American Cancer Society’s (ACS) web-
them. You and your partner may decide you site (www.cancer.org) offers excellent infor-
would also benefit from working with a sex mation about how to talk to children about
therapist. The American Association of Sex a cancer diagnosis in the family. In addition,
Educators, Counselors, and Therapists (www. the ACS offers good advice for how friends
aasect.org) can assist with identifying a cre- and family can be there to help support you
dentialed sex therapy professional. during this time, along with how you can
talk to friends and family members about
There are also several excellent self-help your diagnosis.
books on the topic of sexual function for
cancer survivors. The booklet “Ovarian If your cancer is the result of inherited
Cancer: Sexuality and Intimacy” is available cancer syndromes such as BRCA1/2, or you
for free by contacting The National Ovarian are considering genetic testing, you may be
Cancer Coalition at 1-888-OVARIAN or www. wondering how to discuss this with family
ovarian.org. The American Cancer Society members and the implications of this infor-
has published two books on sexuality after mation. The National Cancer Institute offers
cancer, one for men and one for women patient education materials such as “Under-
(Sexuality & Cancer: For the Woman Who Has standing Gene Testing” at www.cancer.gov
Cancer and Her Partner; for a free copy call or at 1-800-422-6237. You may also want to
contact The Gilda Radner Familial Ovarian
Cancer Registry at 1-800-682-7426.

Ovarian Cancer Quality of Life Issues 17


End of Life Concerns

All women with ovarian cancer face con- Advance Directive


cerns about the end of life. While women An “Advance Directive” is any set of instruc-
are living longer thanks to new treatments, tions you give for your future medical care.
thinking about the possibility of death is These instructions would be followed when
totally normal once you have been given and if you were unable to make decisions for
this diagnosis. yourself, such as when you become too ill to
Some women may worry about dying even communicate or are unconscious. You have
before they have surgery, while others don’t many options for these instructions. You can
start thinking about it until they have taken create a living will, which is a document that
multiple chemotherapy regimens. explains your wishes for medical care when
you cannot make your own decisions.
What is important is that you You can also name a surrogate decision
devote your energy to this issue maker, someone you identify and trust to
when the time is right for you. make those decisions for you. This is called
the durable healthcare power of attorney or
While you may think this is a difficult topic healthcare proxy. Depending upon where
to discuss with your loved ones, it will be you live, this person may be able to make
much more difficult if you have not dis- medical decisions for you at any time you are
cussed your preferences with them. Usually unable to do so. In certain states, this person
once the subject is discussed, everyone can only make decisions for the patient at
feels a great sense of relief. the end of her life. Such important consider-
ations may involve the wish for life-sustain-
ing treatment or hospice consultation.

18
It is important to create these documents Considering Hospice
now. You can revise or modify them at any Once you decide to no longer receive active
time. If you think of an Advance Directive treatment, the focus shifts to providing
as an ongoing dialogue with your loved comfort care. The goal is to help take care
ones and healthcare team, you will be able of any symptoms you may have, such as
to change it as needed to fit with what is nausea or pain, and keep you as comfort-
going on in your life. By creating such a able as possible. Quality of days rather than
document, you can be sure that your wishes quantity is the priority.
are met and can also relieve your family of
Hospice care focuses on patients who are
the burden of making these difficult deci-
terminally ill. This team of healthcare work-
sions for you.
ers includes physicians, nurses, social work-
ers, pastoral care workers, and volunteers
Do Not Resuscitate
who are experts in end of life care.
A “Do Not Resuscitate” or “DNR” order can
be part of your Advance Directive. In this Hospice can take place in a facility, such
situation, you request that you are not put as part of a hospital, or in a free-standing
on a breathing machine if you stop breath- building. It can also be in your home. This
ing and do not receive cardiopulmonary requires that someone stay with you at all
resuscitation (CPR) if your heart were to times. It does not always have to be a rela-
stop beating. Once this decision is made, tive and does not need to be the same per-
your doctor places a DNR order in your son all the time. People often prefer home
chart. This order usually must be renewed hospice, as the healthcare team can come
on subsequent hospitalizations. to their home to help, and they can remain
in a familiar and comfortable setting.
People are often reluctant to discuss this
issue with their physician as they feel DNR
means they will no longer receive appropri-
ate medical care. This is far from the truth. There is no right or wrong here.
This order just means that extraordinary What really matters is that you
measures such as intubation (being put spend your time in the setting you
on a breathing machine) or CPR will not choose. Hospice is about keeping
be performed. It does not mean that your you comfortable and helping you
medical condition will be ignored or that
feel loved during this time.
you will be given sub-standard care. As with
the Advance Directive, a DNR order gives
you control in what may be a very difficult
In addition to helping you, hospice is also
situation for you and your family. It ensures
an invaluable service to your loved ones.
that your wishes are respected. You might
Hospice workers help not only with medical
not be ready to think about DNR right now.
care, but also provide emotional support to
Nothing is wrong with this. Just be aware
you and your loved ones. They are trained
that it is an option to give you more control
to help you deal with the physical, emotion-
of your medical situation should the circum-
al, and even spiritual issues which may arise.
stances arise.
Ovarian Cancer Quality of Life Issues 19
Complementary and Alternative Medicine

Complementary and Often there is very little published infor-


Alternative Medicine mation about such therapies, and such
People are often confused about the dif- interventions may, in fact, interfere with the
ferences between complementary and treatment prescribed by your physician. It
alternative medicine. Complementary medi- is important to discuss any and all medica-
cine makes use of non-conventional treat- tions you are taking with your physician, as
ment modalities, such as acupuncture, in some alternative treatments might decrease
combination with conventional or standard the efficacy of your chemotherapy.
treatment. Alternative medicine, on the Other treatments could potentially make
other hand, refers to a treatment modality you bleed more, a big concern if you are go-
that is used in place of standard treatment. ing to have surgery. Depending upon your
By definition, alternative treatments are not kidney and liver function, some alterna-
integrated as part of conventional medicine. tive treatments could have difficulty being
Many physicians are now replacing the term metabolized by your body. This could lead
“Complementary and Alternative Medicine” to high and potentially dangerous levels of
(CAM) with that of Integrative Medicine. these drugs in your body.
Rather than focusing on specific non-con- The more information you can get about all
ventional treatment modalities, this term the therapies you are considering, the more
describes an approach to treating patients. educated your decision will be and the
It strives to integrate the best complemen- less the risk you will be taking in terms of
tary and conventional modalities using a possible drug interactions or side effects. If
multidisciplinary care approach. your doctor cannot advise you about these
So what does Integrative Medicine mean for therapies, ask him/her to recommend a reg-
you? Several recent studies reveal that up istered pharmacist who is knowledgeable
to 90% of ovarian cancer patients already about these issues. None of us would want
combine some type of complementary to take a therapy that could potentially
medicine with the treatment prescribed harm or lessen chances of a cure!
by their physician. Common approaches
include massage and other touch therapies, Nutrition
yoga and tai chi, art therapies, meditation The most meaningful advice about nutri-
and relaxation therapy, as well as acupunc- tion and cancer is something your mother
ture. These treatments may help reduce side probably told you long ago: “Eat a healthy
effects of cancer therapy, improve quality and balanced diet. Eat plenty of fruits and
of life, enhance self-care, and reduce pain, vegetables. Drink lots of water.”
anxiety, and depression. These concepts work well for women with
cancer and those without. Make sure you
Caution should be given to have plenty of fruits, vegetables, protein,
and fiber in your diet. Drink lots of water, es-
alternative treatments which
pecially if you are receiving chemotherapy,
you might combine with as this helps “flush out” your system. Many
standard therapies. oncologists recommend that you take a

20
daily multivitamin. This is fine, as long as it beliefs influence the manner in which you
does not upset your stomach. Do not take make medical decisions, you should let your
megadoses of vitamins, as this may be dan- healthcare team know. You should expect that
gerous. Vitamins A, D, E and K are fat soluble, your doctor will respect your religious or spiri-
meaning they can stay in your system and tual views, regardless of whether you consider
build up to dangerous levels if your body yourself to be spiritual/religious or not.
cannot metabolize them. Moderation in While researchers do not know for sure if
terms of vitamins is the best approach. spiritual and religious well-being are as-
Ask your doctor to recommend a nutritionist sociated with a better quality of life, some
to you. The nutritionist will help you plan a experts believe that it may help a woman’s
healthy diet whether you have had surgery positive mental attitude. This, in turn, may
or are undergoing chemotherapy. The help her better cope with the disease and
nutritionist will also make sure you get the treatment process.
nutrients you need. If religion or spiritual practices such as medi-
Women with ovarian cancer can have special tation are a normal part of your life, then you
dietary needs if they have had extensive may find that you will seek this support on a
bowel surgery or have a partial bowel ob- regular basis during the diagnosis and treat-
struction. Certain chemotherapy drugs can ment process. Likewise, if you want to speak
make you very nauseated and unable to eat. to someone about spiritual or religious con-
The input of the nutritionist is critical in these cerns but do not have access to these indi-
situations. You will become stronger and feel viduals, let your hospital social worker know
better if your nutrition is the best it can be. or speak with a member of your healthcare
team to ask how you can contact a hospital
Spirituality chaplain, clergy, rabbi or support group that
When people hear the term “spirituality” they addresses spiritual concerns during illness.
often think about religion. Spirituality has
In times of crisis, many women may turn to
been defined as a person’s sense of peace,
their place of worship for spiritual and social
purpose, and connection to other people
support to help cope with the day-to-day
and how a person views the meaning of life.
concerns of living with ovarian cancer.
A person’s religious practice may be a way
of expressing her spirituality although it is Women may find strength
important to acknowledge that a woman in their religion or spiritual
may be very spiritual but not religious. Either
way, a woman’s spiritual perspective may
outlook; it may help them
help her cope with a life-changing event connect emotionally to other
such as a diagnosis of ovarian cancer. Cancer people in turn helping them
affects every part of a woman’s life - life at
home, at work, with friends and with family.
cope with their disease and
Some women may want their doctors to begin the healing process.
discuss spiritual concerns with them, while
others may not. If your spiritual or religious

Ovarian Cancer Quality of Life Issues 21


Your Role in the Decision-Making Process

Cancer diagnosis and treatment can be over-


whelming for any person and it can be easy
to lose track of where and when decisions Living with cancer involves making
need to be made. In the midst of learning all major decisions. Broadly speaking,
of the terminology, anatomy and scientific decisions will need to be made:
information that comes with undergoing • At the time of diagnosis and surgery
surgery and chemotherapy, some women (Who will do the surgery? Where will
may prefer that their physicians make all the it be done? Does the pathology need
major medical decisions. Still other women to be confirmed?)
may want to question every aspect of their • At the time of treatment planning
medical care and challenge their healthcare (Where to receive chemotherapy?
team on even minor issues. Is there a study available? How
For women with ovarian cancer, an excellent many cycles?)
source of information is the book, Ovarian • During follow-up (CA 125 results,
Cancer: Your Guide to Taking Control (2003) maintenance issues)
by Kristine Conner and Lauren Langford. A
• If/when CA 125 increases or recur-
section of this book discusses how to find
rence is found on follow-up (More
the right doctor and how to establish a good
chemotherapy? Another surgery?)
working relationship with him/her.
• What to do if the cancer is not
It is important for women to understand responding to the chemotherapy
that often, in oncology, there may be no (Change chemotherapies? Look for
“right answers” - even the best doctors may clinical trials? Get a second opinion/
not agree upon certain issues related to visit a different hospital?)
cancer treatment. It is also important for
• When to stop treatment (End of life
women to understand that it is each woman’s
issues?)
right to decide upon all aspects of her medi-
cal care and to have access to her medical
records and test results.

22
Support Services

Your healthcare team is a diverse group of Ostomy Nurse


people dedicated to giving you the best This individual has received special training
care possible while you fight ovarian cancer. in wound care and the care of ostomies
In addition to physicians and nurses, there (colostomies, urostomies, etc). His or her job
are many other people working to take care is to teach you, usually in conjunction with
of you. If you haven’t met the people listed floor nurses, how to care for your ostomy.
here and feel that you should have, ask your The goal is to help you feel comfortable
doctor to introduce you. Each individual has with this change in your life, whether it is
expertise in an area which could be a big temporary or permanent. Ostomy nurses
help to you. often have a network of patients who
volunteer to speak with other patients
Case Manager about to undergo ostomy surgery. Talking
Depending upon the organization of your with someone in your situation is often
hospital, the case manager is the individual very helpful in addressing and allaying your
assigned specifically to you while you are concerns.
hospitalized. This person helps facilitate
your discharge from the hospital, sets up Nutritionist
outpatient services you need, and helps The nutritionist can provide valuable advice
coordinate insurance issues. He or she about your diet and nutritional needs.
deals with such practical issues as getting a Nutritionists who specialize in working with
home health nurse, renting a wheelchair, or cancer patients have expertise in dealing
setting up physical therapy appointments. with post-operative patients, especially
Your case manager should work with you those with ostomies, as well as patients with
to help anticipate and meet needs you will special nutritional needs. Most institutions
have after you leave the hospital. have nutritionists on staff.

Patient Advocate Social Worker


This is again institution-dependent. This The Social Worker often works in conjunc-
person is your advocate. You should contact tion with the case manager and patient
him/her with any concerns that cannot advocate to meet any practical needs you
be addressed by other members of your might have. This person may help with
healthcare team. The advocate can help financial concerns, job-related issues, and
facilitate obtaining pathology reports, establishing advance directives. Lodging
reschedule chemotherapy administration questions, transportation issues, and even
if your appointment won’t work for you, or meal tickets are usually taken care of by the
just listen to concerns you have about your Social Worker.
care. Advocates know the “ins and outs” of
the institution, and function to help with
any problems you might have.

Ovarian Cancer Quality of Life Issues 23


Psychiatrist The Importance of a
Most hospitals have a psychiatrist on staff Gynecologic Oncologist
who helps patients deal with the emotional It cannot be emphasized enough how
aspects of a cancer diagnosis and cancer important it is to be under the care of a
treatment. These physicians often work gynecologic oncologist. This physician is
together with social workers to provide sup- specially trained to take care of women
port and treatment for such issues as depres- with gynecologic cancers, including those
sion and anxiety. They may also run support with ovarian cancer. Most gynecologic
groups in your hospital to help women with oncologists perform surgery and admin-
ovarian cancer deal with such issues. ister chemotherapy. They also provide
surveillance once treatment has been
Physical and Occupational Therapist completed. Studies show that women
Physical and Occupational Therapists can be who have their surgery performed by a
invaluable to patients recovering from sur- gynecologic oncologist live longer than
gery, experiencing cancer-related symptoms, those who do not. We encourage all
or having treatment-related side effects. They women to seek the care of a gynecologic
can help with physical issues such as walking, oncologist if they are concerned about
and with occupational-type issues such as having a gynecologic cancer.
performing household tasks after recover-
ing from an extensive surgery. Services are
usually offered on both an inpatient and
outpatient basis.

24
About the Authors

Diane C. Bodurka, MD
Dr. Diane C. Bodurka is an Associate Professor Charlotte C. Sun, DrPH, MPH
in the Department of Gynecologic Oncology Dr. Sun is an Assistant Professor in the Department
at M. D. Anderson Cancer Center. She is also of Gynecologic Oncology at The University of Texas
Program Director of the Gynecologic Oncology M. D. Anderson Cancer Center. Dr. Sun’s research
Graduate Education Training Program, the largest interests include patient preferences for side
gynecologic oncology training program in the effects of different treatments for women with
United States. Dr. Bodurka’s major clinical interests gynecologic cancers, patient/physician decision-
include ovarian cancer and health services making and clinical outcomes analyses. She is a
research, particularly quality of life issues, patient graduate of Rice University, Boston University and
preferences, and outcomes analyses. She has The University of Texas School of Public Health.
studied depression in ovarian cancer patients and
Karen Basen-Engquist, PhD, MPH
has been awarded two grants to study quality
Dr. Basen-Engquist is an Associate Professor of
of life and patient preferences for treatment
Behavioral Science at The University of Texas M. D.
outcomes in women at increased risk of breast
Anderson Cancer Center, and the Director of the
and ovarian cancer, as well as in women receiving
M. D. Anderson Quality of Life Assessment Shared
high-dose versus standard chemotherapy. Dr.
Resource. She conducts research on quality of life
Bodurka received her undergraduate degree in
(QOL) and health behaviors of cancer patients,
Psychobiology from The University of California,
survivors and people at increased cancer risk.
Los Angeles. She earned her M degree from
Her current research projects focus on innovative
Georgetown University School of Medicine in
real-time methods for assessing fatigue and
1990. She went on to complete her internship and
other symptoms in cancer patients and survivors,
residency in Obstetrics and Gynecology, where she
how exercise and physical activity affect cancer
was honored as both Administrative Chief Resident
survivors’ physical and emotional well-being,
and Best Teaching Resident. She moved on to M. D.
and development of interventions to help cancer
Anderson that year as a Junior Faculty Associate,
survivors adopt more physically active lifestyles.
where she completed a 2-year fellowship in
Dr. Basen-Engquist also studies cervical cancer
Gynecologic Oncology. She is currently a Master’s
screening and prevention in a National Cancer
Candidate in Health Services Organization at The
Institute-funded Program Project grant; the
University of Texas School of Public Health.
current emphasis of these studies is the effect of
new screening and diagnostic technologies on
patient distress and adherence to cervical cancer
screening and follow-up.

From the Departments of Gynecologic Oncology


and Behavioral Science, The University of Texas
M. D. Anderson Cancer Center, 1515 Holcombe
Blvd., Houston, TX 77030 USA

When a Loved One has Ovarian Cancer 5


Mission Statement
The National Ovarian Cancer Coalition’s
mission is to raise awareness and promote
education about ovarian cancer. The
Coalition is committed to improving the
survival rate and quality of life for women
with ovarian cancer.

This publication was funded by a grant from


Office Depot and AT&T

National Ovarian Cancer Coalition, Inc.


2501 Oak Lawn Ave., Suite 435
Dallas, TX 75219
Tel (214) 273-4200 Fax (214) 273-4201
1-888-OVARIAN
www.ovarian.org

© National Ovarian Cancer Coalition, Inc. 2006


A tax-exempt not-for-profit corporation 4/09