Ovarian Cancer Resource Guide for newly-diagnosed women

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Ovarian Cancer Resource Guide
for newly-diagnosed women
National Ovarian Cancer Coalition, Inc.
500 NE Spanish River Boulevard, Suite 8
Ovarian Cancer Resource Guide
Ovarian Cancer Resource Guide
Boca Raton, Florida 33431
for newly-diagnosed women
for newly-diagnosed women
Ovarian Cancer… It Whispers, So Listen!
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.
© National Ovarian Cancer Coalition, Inc.
A tax-exempt not-for-profit corporation 10/06
Supported by an educational grant from Ortho Biotech Products, L.P.
Ovarian Cancer Resource Guide
for newly-diagnosed women

Ovarian Cancer Resource Guide
Table of Contents
Managing Your
Helpful Resources
Ovarian Cancer
Treatment and Coping • Healthcare team chart
• What is ovarian cancer?
with Side Effects
• Glossary of cancer terms
• Types of ovarian cancer
• Cancer resources
• Preparing your treatment schedule
• Ovarian cancer risk factors
• Comprehensive cancer centers
• What to expect from treatment
• How is ovarian cancer diagnosed?
• Treatment chart
• Chemotherapy 101
• Stages of ovarian cancer
• Notes pages
• Coping with side effects
• Choosing your healthcare team
Sexual side effects
• Ovarian cancer treatment
Fatigue and anemia
• Communicating with your healthcare team
• Introduction to clinical trials
Hair loss
• Complementary therapies
Nausea and vomiting
Mouth and throat problems
Anxiety and depression
Nerve and muscle problems
Skin irritation

Ovarian Cancer….the journey begins
As you embark on your experience, we leave
Receiving a diagnosis of ovarian cancer from your doctor is just the
you with the following words of wisdom from
beginning of a very personal and unique journey for you and your
author Jane E. Brody:
loved ones. This path can be scary at times, and will likely present a
variety of emotional and physical challenges.
“Learning to live with cancer is an art,
One thing you should know is that you do not need to walk this
not a science. Each person must
path alone.
The National Ovarian Cancer Coalition (NOCC) is here to support
find her own way, in her own style.
you and your family throughout the course of your disease. Many of
What is important to realize is that a
us have walked the same path and we are here to provide you with
information, compassion and encouragement.
way can be found regardless of the
After being diagnosed with ovarian cancer, you probably will feel
circumstances and prospects.”
uncertain and have many questions about this disease. How will it
affect my body and my life? What’s the best plan of action to manage
the disease? What treatment side effects will I experience?
We’ve designed this Ovarian Cancer Resource Guide to empower
you with credible information that wil answer your commonly asked
questions. The Guide has been reviewed by ovarian cancer experts
and is divided into three sections:
• Understanding Ovarian Cancer
• Managing Cancer Treatment and Coping with Side Effects
• Helpful Resources
The back pocket of the Guide includes additional resources with
in-depth information on select topics that you will find helpful.
Remember, since treatments and research are always evolving, check
in with us often for the latest information. You are not alone and we
are here to provide further support during your journey. You always
can call 1-888-OVARIAN, visit our website, www.ovarian.org or contact
your local NOCC Division.

Understanding Ovarian Cancer

What is Ovarian Cancer?
Types of Ovarian Cancer

There are more than 30 different types of ovarian cancer which are
Ovarian cancer begins in the ovaries – two almond-shaped reproduc-
classified according to the type of cell from which they start.
tive organs located on each side of a woman’s uterus that release
eggs and produce the female hormones estrogen and progesterone.
Cancerous ovarian tumors can start from three common cell types:
Surface Epithelium – cel s covering the lining of the ovaries
Germ Cells – cells that are destined to form eggs
Cord-Stromal Cells – Cells that release hormones and connect the
different structures of the ovaries
1) Common Epithelial Tumors – Epithelial ovarian tumors develop
from the cells that cover the outer surface of the ovary. Most
epithelial ovarian tumors are benign (non-cancerous). There
Fallopian Tube
are several types of benign epithelial tumors, including serous
adenomas, mucinous adenomas, and Brenner tumors.
Cancerous epithelial tumors are carcinomas – meaning they begin
in the tissue that lines the ovaries. These are the most common and
most dangerous of all types of ovarian cancers. Unfortunately, almost
70 percent of women with the common epithelial ovarian cancer are
not diagnosed until the disease is advanced in stage.
There are some ovarian epithelial tumors whose appear-ance under
the microscope does not clearly identify them as cancerous. These
are called borderline tumors or tumors of low malignant potential
(LMP tumors).

Cancer Basics
Epithelial ovarian carcinomas (EOC’s) account for
Cancer develops when cells in a part of the body (in this case the
85 to 90 percent of all cancers of the ovaries. We
ovary) begin to grow out of control. Although there are many kinds
must continue research and expand our knowledge
of cancer, they all start because of out-of-control growth of
about this group of cancers in order to improve
abnormal cells.
treatment and save lives.
Normally, cells in your body divide, and form new cells to replace
worn out or dying cells and to repair injuries. Because cancer cells

continue to grow and divide, they are different from normal cells.
2) Germ Cell Tumors - Ovarian germ cell tumors develop from
Instead of dying, they outlive normal cel s and continue to create new
the cells that produce the ova or eggs. Most germ cell tumors are
abnormal cells forming a tumor. Tumors can put pressure on other
benign (non-cancerous), although some are cancerous and may
organs lying near the ovaries.
be life threatening. The most common germ cell malignancies are
Cancer cells sometimes can travel to other parts of the body where
maturing teratomas, dysgerminomas, and endodermal sinus tumors.
they begin to grow and replace normal tissue. This process, called
Germ cell malignancies occur most often in teenagers and women in
metastasis, occurs as the cancer cells move into the bloodstream
their twenties. Today, 90 percent of patients with ovarian germ cell
or lymph vessels of our body. Cancer cells that spread from other
malignancies can be cured and their fertility preserved.
organ sites (such as breast or colon) to the ovary, are not considered
3) Stromal Tumors - Ovarian stromal tumors are a rare class of
ovarian cancer.
tumors that develop from connective tissue cel s that hold the ovary
together and those that produce the female hormones, estrogen and
progesterone. The most common types are granulosa-theca tumors
and Sertoli-Leydig cel tumors. These tumors are quite rare and are
usual y considered low-grade cancers, with approximately 70 percent
presenting as Stage I disease (cancer is limited to one or both ovaries).

U N D E R S T A N D I N G O V A R I A N C A N C E R • page 5
How is Ovarian Cancer Diagnosed?
Ovarian Cancer Risk Factors
Unfortunately, most women with ovarian cancer are diagnosed with
While the presence of one or more risk factors
advanced-stage disease (Stage III). This is because the symptoms of
ovarian cancer (particularly in the early stages) often are not acute
may increase a woman’s chance of developing
or intense, and present vaguely. In most cases, ovarian cancer is not
ovarian cancer, it does not necessarily mean
detected during routine pelvic exams, unless the doctor notes that the
she will develop the disease.
ovary is enlarged.

Risk factors include:
It is important to know that early stage symptoms
• Genetic predisposition
are not silent – so women should be alert and watch
out for early symptoms.
• Personal or family history of breast, ovarian
or colon cancer
• Increasing age
Symptoms of ovarian cancer include:
• Undesired infertility
• Pelvic or abdominal pain or discomfort
• Vague but persistent gastrointestinal upsets such as gas, nausea
and indigestion
• Frequency and/or urgency of urination in the absence of an infection
Family Risk of Ovarian Cancer – the BRCA1
• Unexplained changes in bowel habits
and BRCA2 Genes
• Unexplained weight gain or weight loss; particularly weight gain in
A woman can inherit an increased risk for ovarian cancer from either
the abdominal region
her mother’s or father’s side of her family, particularly if a first-degree
• Pelvic and/or abdominal swelling, bloating and/or feeling of fullness
relative (mother, father, sister, daughter) has, or has had ovarian, breast,
prostate or colon cancer. Furthermore, women with a strong family
• Ongoing unusual fatigue
history of ovarian cancer are more likely to develop the disease at an
Diagnotic Tests to Detect Ovarian Cancer
early age (younger than 50). Women of Ashkenazi (Eastern European)
descent also are at greater risk if they have an affected family member.
Although there is no consistently-reliable or accurate screening test
to detect ovarian cancer, the following tests are available and should
Studies show that inheriting a defect in the BRCA1 or BRCA2 gene
be offered to women, especially those at high risk for ovarian cancer.
can increase a woman’s risk of developing ovarian cancer by about
10% to 40%. Normally, these genes help to prevent cancer, but if a
Annual Vaginal Exam: Women age 18 and above should have an annual
woman has inherited a mutated BRCA1 or BRCA2 gene, her ovaries
vaginal exam. Women age 35 and above should receive an annual
and breasts are more susceptible to the development of cancer.
rectovaginal exam (physician inserts fingers in the rectum and vagina
simultaneously to feel for abnormal swel ing and to detect tenderness).
Transvaginal Sonography: This ultrasound, performed with a small
Did You Know?
instrument placed in the vagina, is appropriate especial y for women at
The Pap test does not detect ovar ?
ian cancer.
high risk for ovarian cancer or for those with an abnormal pelvic exam.
It determines cancer of the cervix.
CA-125 Test: This blood test determines if the level of a tumor marker
called CA-125, a protein produced by ovarian cancer cells, has
increased in the blood of a woman at high risk for ovarian cancer or
with an abnormal pelvic examination.
While CA-125 is an important test, it is not definitive because some
non-cancerous diseases of the ovaries also increase CA-125 levels,
and some ovarian cancers may not produce enough CA-125 levels
to cause a positive test.

Following is a description of the various
stages of ovarian cancer:
Stage I – Growth of the cancer is limited to one or
both ovaries.

Stage IA – Cancer is limited to one ovary and the tumor is
confined to the inside of the ovary. The tumor capsule is
Stage IB – Cancer is in both ovaries and the tumors are
confined to the inside of the ovaries. The tumor capsule is
Stage IC – The tumor is classified as either Stage IA or IB and
one or more of the following are present: 1) tumor is present
on the outer surface of one or both ovaries; 2) the capsule
(fluid-filled tumor) has ruptured; and 3) there are ascites
(accumulations of fluid within the abdomen) containing
malignant cells or with positive peritoneal washings (cancer
cells are found in the fluids of the abdomen).
Stage II – Growth of the cancer involves one or both ovaries
and has spread to other areas within the pelvis.

Stage IIA – The cancer has spread to and/or involves the
uterus or the fallopian tubes, or both.
Stage IIB – The cancer has spread to other pelvic organs.
Positive Tests

Stage IIC – The tumor is classified as either Stage IIA or IIB
If any of these tests are positive, a woman should consult with a
and one or more of the following exist: 1) tumor is present on
gynecologic oncologist who may conduct a CT scan and X-Rays and
the outer surface of one or both ovaries; 2) the capsule has
study the results. However, the only way to more accurately confirm
ruptured; and 3) there are ascites containing malignant cells
ovarian cancer is with a biopsy, a procedure in which the doctor takes
or with positive peritoneal washings (cancer cells are found in
a sample of the tumor and examines it under a microscope.
the fluids of the abdomen).
Stage III
Research into new ovarian cancer screening tests is ongoing and new
– Growth of the cancer involves one or both
ovaries and has spread to the lining of the abdomen or the
diagnostic tests may be on the horizon. NOCC monitors the latest
lymph nodes (smal glands in the body).
scientific developments, so visit www.ovarian.org for updates.

Stage IIIA – Cancer cel s are in the lining of the abdomen but
The Stages of Ovarian Cancer
are too small to see without a microscope. Cancer has not
spread to the lymph nodes.
Once you are diagnosed with ovarian cancer, the stage of your tumor
Stage IIIB – The tumor is in one or both ovaries, and deposits
can be determined during surgery, when your doctor can tell if the
of cancer in the abdomen are large enough for the surgeon
cancer has spread outside the ovaries.
to see, but do not exceed 2cm in diameter. The cancer has not
There are four stages of ovarian cancer - Stage I (early disease) to
spread to the lymph nodes.
Stage IV (advanced disease). Your treatment plan and prognosis (the
Stage IIIC – The tumor is on one or both ovaries and one or
probable course and outcome of your disease) will be determined by
both of the following is present: 1) the cancer has spread to
the stage of cancer you have.
the lymph nodes; and/or 2) the deposits of cancer exceed 2cm
in diameter and are found in the abdomen.
Stage IV – This is the most advanced stage of ovarian
cancer in which the cancer growth involves one or both of
the ovaries and the cancer has spread to other organs in the
body such as the liver and lungs.

U N D E R S T A N D I N G O V A R I A N C A N C E R • page 7

Choosing your Healthcare Team
Questions to Ask the Second Doctor

• Do you agree with the original diagnosis?
You already may be receiving care from a gynecologic oncologist –
a doctor who specializes in the diagnosis and treatment of women
• What treatment plan would you recommend?
with cancer of the reproductive organs. If you don’t have one yet, you
• Why is your suggestion different from the first doctor’s plan?
will need to find one right away.
The gynecologic oncologist you choose should be highly skilled
Need a Doctor?
in treating and managing ovarian cancer. He or she also should be
sensitive to your needs and concerns, have a personality that you like
For a list of gynecologic oncologists, visit our website,
and be someone you feel comfortable around.
www.ovarian.org, and click on ‘doctor search,’ or call the
Gynecologic Cancer Foundation at 1-800-444-4441.
Questions to Consider when Choosing your Doctor
• Is the doctor experienced treating your type of ovarian cancer?
Ovarian Cancer Treatment

• Do you find it easy to communicate freely with him/her?
After your diagnosis, your doctor wil develop your customized
• Is the doctor’s office staff nice and helpful?
treatment plan. Women should always discuss their treatment options
• Does the doctor return your calls quickly? Is he/she easily reached?
with a physician, because the best and most appropriate treatment will
• Does the doctor accept your insurance?
be different based on the stage of disease, the woman’s age and the
overal condition of her health.
• Does the doctor have a good reputation among other doctors
and patients?
There are three main treatment types for ovarian cancer:
1) Surgery – Surgery to remove the cancerous growth is the most
Your Healthcare Team
common method of diagnosis and therapy for ovarian cancer. It is
During the course of your treatment for ovarian cancer,
best performed by a qualified gynecologic oncologist.
you will receive treatment and consultation from a team of
2) Chemotherapy – Chemotherapy is the treatment of cancer using
healthcare professionals that may consist of one or more of
chemicals (medications) that travel through the bloodstream to
the following:
destroy cancer cel s or stop them from growing both in and outside
• Gynecologic oncologist
• Nutritionist
the ovaries. Chemotherapy is used in the majority of cases as a
follow-up therapy to surgery.
• Radiation oncologist
• Social worker
• Oncology nurses

• Physical therapist
3) Radiation Therapy – Radiation therapy uses high-energy X-rays to
kill cancer cells and shrink tumors (only rarely used in the treatment
• Nurse practitioner
• Psychologist
of ovarian cancer in the United States).
Communicating with your Healthcare Team
Should I Get a Second Opinion?
After you find out that you have ovarian cancer, your mind may race
Getting a second opinion is a commonly-accepted practice, yet
with questions, worries and fears. You may feel new, strong emotions
many people do not seek a second opinion because they are afraid
and a loss of control.
to offend their current physician or because they just don’t have the
energy it takes to find and see another doctor.
While it’s hard to let go of these feelings and erase your concerns,
there is something you can do to take charge – learn to communicate
You have nothing to lose by obtaining a second opinion – and
openly and effectively.
everything to gain.
If a second opinion confirms your original doctor’s diagnosis, you will
only feel more comfortable about your treatment decisions. If the
Open and effective communication with your
new opinion is different, it will inspire you to ask more questions, and
healthcare team can help you get the answers
allow you and your healthcare team to ultimately make a better-
you need and may offer you some peace of mind.
informed decision about your diagnosis and treatment plan.

The First Step – Choosing the Right Doctor
Make sure you choose an experienced and kind doctor who
you trust and feel comfortable around. Your doctor should
be patient, listen carefully, and answer your questions in
language you can understand. Spend time to choose the right
doctor for you.
Remember, your doctor is a professional partner that you
have enlisted to manage your healthcare. You should feel that
he or she is committed to helping you battle ovarian cancer.
If your doctor is unwilling to communicate effectively with
Some Questions to Ask Your Doctor
you, it may be a sign that you need to explore other physicians
to find the right match.
• What is ovarian cancer?
• What is the stage of my cancer and what does that
Maximizing Your Doctor Visits
The reality is, even the most caring and communicative doctors have
• What are my treatment options and what do you
hectic schedules and often have limited time to spend with their
recommend for me?
patients during each visit. By preparing in advance, you can make the
most effective use of your medical appointments.
• What are the side effects of those treatments and how
Prepare questions in advance. Write down questions for the doctor
can I alleviate them?
before each visit and bring them with you to your appointment.
Don’t be shy. Every question you have is important.
• How long will my treatment last?
Ask the most important questions first. Save secondary questions
• How often should I have a CA-125 assessment?
for the nurse who may have more time to spend with you.
• Have you treated other women with ovarian cancer?
Request easier explanations. If the doctor answers in technical
language you do not understand, ask him or her to rephrase in a way
At my stage?
you can understand.
• How do my existing health conditions affect my
Bring a second pair of ears. Sometimes, it can be difficult to
cancer treatment?
concentrate and remember information when you visit the doctor.
Bring a family member or friend with you to help listen and write
• Should I continue to take prescription medications for
down what the doctor says. You also might find it helpful to bring
other medical conditions?
along a tape recorder.
Keep track of changes in your health between appointments. Tel the
• Will I be able to work? Care for my family?
doctor about any notable changes in your health or the way you feel.
• What will the cost of my treatment be?
Educate yourself. Knowledge is power. Try to learn as much as you
can about ovarian cancer and its treatments.
• Can you recommend someone to help me navigate
Stay organized. There’s so much to learn and keep track of, so keep a
my insurance coverage?
notebook, make “to-do” lists, prioritize your activities and record your
treatment schedule and doctor’s appointments.
• Am I eligible for participation in clinical trials?
Include loved ones and caregivers. Communicate openly and
• Do you suggest any complementary therapies?
frequently with your family and friends. They will be eager to help
you in any way possible during the course of your treatment and can
• Should my diet/nutritional requirements change?
be extremely helpful to you in providing practical and emotional
• Can I exercise? Engage in sexual relations?
• Can you recommend a counselor for me to talk to?