This guide describes ovarian cancer diagnosis, staging, and treatment.

Overview

The diagnosis of ovarian cancer brings with it many questions. We hope this booklet will help answer your questions. It has information on:

  • Risk factors
  • Treatments
  • Side effects
  • Follow-up care
  • Resources

Booklets alone cannot answer all of your questions. They cannot take the place of talks with doctors and nurses. But, we hope this information will help supplement those talks. Do not feel you have to read the whole booklet at once. It is meant for you to use over time. Flip through to see what may be helpful to you or check out topics as they come up in your life. Your treatment team will include:

There is no known cause for ovarian cancer. But, we do know about some risk factors that make a woman more likely to develop it. These factors will be discussed later in the booklet. Ovarian cancer is often found by chance. It may be found when a woman has tests or treatment for another illness. Ovarian cancer does not cause symptoms at first. They may start when the cancer has grown large enough to put pressure on surrounding tissue or has spread. In advanced stages, women may have vague, nonspecific symptoms. These may include:

  • Bloating
  • Abdominal swelling
  • Long-term stomach pain or gas pain
  • Pelvic pressure (always feeling the need to have a bowel movement or urinate)
  • Backache
  • Leg ache

About one out of every 70 women in the US will get ovarian cancer. It is the fifth most common cause of cancer death in American women.

Questions to Ask Your Doctor:

  • Why aren't there better detection methods?
  • Should I get a second opinion?
  • What do I tell my children? Are they at risk?
  • Should I get genetic testing done?

Anatomy

Ovarian cancer starts in the cells of the ovary. These cells grow and divide without stopping. The ovaries are female reproductive organs. They also produce hormones. They are found on each side of the uterus. See Figure 1.

An ovary is small and looks like an almond. Every month, an ovary releases an egg. This happens throughout a women's reproductive years. The egg travels to the uterus through a fallopian tube. The ovaries also produce most of the female hormones. This includes estrogen and progesterone. These hormones control the development of the:

  • Breasts
  • Body shape
  • Pattern of body hair

They also control the menstrual cycle and pregnancy.

Tumors

Our bodies are made up of all kinds of cells. Cells grow, divide and make additional cells when needed. Normal cells grow and die in a controlled way. With cancer, cells that are not normal keep dividing and forming more cells without control. These cells form a clump of tissue called a tumor. There are two types of tumors: benign and malignant. Malignant ovarian tumors are cancerous. Benign tumors are not cancerous. They can be cured with a surgery to remove the ovary with the tumor. Benign ovarian tumors are different than ovarian cysts. Cysts:

  • Form on the ovary's surface
  • Are not cancerous
  • Usually go away without treatment

The ovaries are made up of three distinct cell types:

Each cell type can give rise to different kinds of tumors. The most common type of tumor starts in the cells that cover the surface of the ovary. These are called the epithelial cells. The majority of ovarian cancers are this type. About 20,000 women are diagnosed with this type of ovarian cancer each year.

The second kind of tumor starts in the germ cells. These cells form the eggs in the ovary. Only about 5 percent of ovarian cancers are germ cell cancer. These tumors can occur in women at any age. But, they tend to affect women in their twenties.

The third type of tumor starts in the stromal cells. These cells form the tissue that holds the ovary together and produce hormones. Only about 5 percent of all ovarian cancers are stromal cell cancer. These tumors usually occur in women under 50 years old. A common symptom of these tumors is known as virilism. It includes:

  • Infrequent menstrual periods
  • Menstrual periods after menopause
  • Appearance of facial hair
  • A hoarse voice

Risk Factors

The cause of ovarian cancer is unknown. But, there are risk factors that increase a woman's chance of getting it. They are:

  • Family history
  • Personal history of cancer
  • Nulliparity (never having given birth)
  • Age
  • Early menarche, late menopause

While women with one or more of these have an increased chance, most of them will never develop it. Many women who get ovarian cancer have no known risk factors for it.

Family History

Family history is the most important risk factor for ovarian cancer. The risk increases for a woman who has had a close or first degree relative that had it. A first degree relative is a mother, sister or daughter. A woman with one first-degree relative who had it, has a 5% lifetime risk of ovarian cancer. A woman with two or more first-degree relatives who had it is more likely to get it than a woman with no family history of it. A family history of breast cancer may also increase the risk for ovarian cancer.

The BRCA1 and BRCA2 genes are believed to cause about 90% of familial ovarian cancer. They are also responsible for about half of all cases of familial breast cancer. Most women have two normal copies of either gene. These genes make a cancer-preventing substance. Some women have a genetic defect in one of their two BRCA1 genes. That gene then does not produce a normal amount of this cancer-fighting substance. These women are at very high risk of getting ovarian cancer. It can be as high as 20-40% over the course of a lifetime.

Previous History of Cancer

Some cancers occur as part of a syndrome. This syndrome includes an increased risk of other cancers. A personal history of the cancers below may be a part of a syndrome that includes ovarian cancer risk:

Nulliparity

Women who have never had children are more likely to get ovarian cancer than women who have had children. In fact, the more children a woman has had, the less likely she is to get ovarian cancer.

Age

The risk of getting ovarian cancer increases as a woman gets older. It mostly occurs between the ages of 40 and 70. The risk peaks between 55 and 59 years.

Menstruation

The overall length of time a woman has ovulated has been linked to ovarian cancer risk. Women who start menstruating at an early age and stop at a late age have an increased risk. Those who start late and stop early have a decreased risk. Also, those who have had long spells when ovulation was stopped have a decreased risk. Ovulation may be stopped because of pregnancy, lactation, or oral contraceptives.

Diagnosis

There are no screening tests for ovarian cancer. It is very rarely found during a routine pelvic exam. To help find the cause of symptoms, your doctor will take your medical history. The doctor will also do a physical exam and order tests. Some exams and tests are described below:

  • CA-125 is an antigen. It is made by a large number of serous carcinomas of the ovary. These account for about 40% of ovarian cancers. CA-125 can be found in the blood. It is considered a tumor marker. It is elevated in up to 96% of patients with advanced ovarian cancer. The test may be done on women suspected of having ovarian cancer. But, it is used mainly to assess response to treatment. Rising values indicate the need for more treatment. Values may start to rise months before the cancer can be found clinically. But, early ovarian cancer may not cause any rise in CA-125. Also, conditions such as fibroids and endometriosis can elevate the CA-125 level. These conditions are not malignant.
  • Transvaginal ultrasound is the first exam done for suspected ovarian cancer. Transabdominal ultrasound may be used to check for a tumor in the ovary and abdomen. These tests can also check for fluid in the abdomen. This can mean that there is advanced disease around other nearby organs. Ultrasound is a process that converts sound waves to images. It is used to examine the soft tissue structures within the body. It is useful in determining if the mass is solid or has fluid in it. It can detect an abnormal size and shape of the ovaries. It can find suspicious qualities that may suggest ovarian cancer. The exam creates a picture called an ultrasound or sonogram. It is a simple process. There is no radiation and no side effects. It does not require any injections. For the procedure, you will lie on a bed. Ultrasound gel will be put on the skin on the area being examined. Since ultrasound does not go through air, the gel provides a medium through which the sound waves can travel. A small ultrasound device will then be moved across the surface of the skin. This device is called a transducer. It will send signals that produce the images.
  • CT or CAT scan is a computer-generated group of x-rays. Doctors can see “slices” of the patient's abdomen and pelvis. They will look for changes in the ovaries and other parts of the body. This test is used to see if the cancer has spread. Usually an oral and an intravenous (IV) contrast are given. This will increase the distinction in the scan. You may be put on a restricted diet. For the test, you will lie on a table and the machine, which is quite noisy, will move around you. The test itself is not painful. If you are given IV contrast, you may have a burning sensation. Both oral and IV contrast can cause nausea, itching, flushing, a bitter taste, and vomiting.

Staging

Staging is done with tissue taken during surgery. It helps direct the course of treatment. During the surgery, the whole abdominal cavity can be inspected. Biopsies can also be taken. The different stages of ovarian cancer are classified as follows:

  • T0: no evidence of primary tumor.
  • T1: tumor is limited to ovaries (one or both).
  • T1a: tumor limited to one ovary; capsule intact, no tumor on ovarian surface. No malignant cells in abdominal fluid or washing of the peritoneal cavity.
  • T1b: tumor limited to both ovaries, capsule intact, no tumor on ovarian surface. No malignant cells in abdominal fluid or washing of the peritoneal cavity.
  • T1c: tumor limited to one or both ovaries with any of the following: capsule ruptured; tumor on ovarian surface; malignant cells in abdominal fluid or washing of the peritoneal cavity.
  • T2: tumor involves one or both ovaries with pelvic extension.
  • T2a: tumor extends to and/or implants on uterus and/or fallopian tubes. No malignant cells in abdominal fluid or washings of the peritoneal cavity.
  • T2b: tumor extends to other pelvic tissues. No malignant cells in abdominal fluid or washings of the peritoneal cavity.
  • T1c (2a or 2b): tumor extends to the pelvis with malignant cells in abdominal fluid or washing of the peritoneal cavity.
  • T3 and/or N1: tumor involves one or both ovaries with microscopically confirmed peritoneal metastasis outside the pelvis and/or regional lymph node metastasis.
  • T3a: evidence of microscopic peritoneal metastasis beyond the pelvis.
  • T3b: evidence of macroscopic peritoneal metastasis beyond the pelvis.
  • T3c: peritoneal metastasis beyond the pelvis greater than 2 cm and/or lymph node metastasis.
  • M1: distant metastasis.

By the time many women find out that they have ovarian cancer, it is often at stage 3 or 4 (T3 or T4). This is because the early symptoms can be confused with other common problems. The cancer is then not caught until it has reached later stages.

Treatment Options

Ovarian cancer is similar to many chronic diseases. This means treatment will likely be ongoing. The main treatments for ovarian cancer are surgery and chemotherapy. Patients often need many cycles of chemotherapy. The treatment that you will get is based on the stage of your disease and your general health. Your doctor will choose the best possible treatment for you.

Surgery is usually the first treatment for ovarian cancer.

Stage 1 (T1)

If tests show that the cancer is likely to be stage 1, the doctor may leave one ovary and the uterus in. This is done in women of child-bearing age who wish to have children. Some patients who have proven stage 1 cancer after staging, may not need more treatment. These patients are followed with physical exams and CA-125 blood tests. Patients who have stage 1c disease may be offered chemotherapy after surgery.

All Other Stages

Your doctor may do an exploratory or staging laparotomy. A laparotomy is a surgery that is done through one large incision in the abdomen. All organs are carefully inspected. If cancer is found, a total abdominal hysterectomy may be done. This is the removal of the ovaries and fallopian tubes. It also includes sampling of the lymph nodes. An omentectomy is the removal of an apron-like fatty structure. This may be done at the same time. The omentum has no known function but tumor cells often spread there. Many biopsies are also done. If the tumor has spread, your doctor will remove as much of it as possible. This will be done unless it is too dangerous to remove the tumor(s). The doctor will discuss this with you before surgery.

Sometimes, surgery is repeated. This is done for various reasons.

  • Interval Cytoreductive Surgery: This is done after the first surgery and a short course of chemotherapy. The goal is to remove as much residual cancer as possible. It is done in patients who still have cancer that can be removed. It may also be done if other organs are involved. The doctor will discuss this with you beforehand.
  • Secondary-Surgical Debulking: Patients who relapse 6 months or more after the first surgery and chemotherapy may have this. The goal is to remove any visible cancer that is still in the abdomen. This may increase your time in remission.

Questions to ask your doctor:

  • Were you able to get rid of all of the cancer?
  • Am I going to go into menopause?
  • Can I take hormone replacement therapy?
  • How soon after surgery will I be able to have sexual relations?
  • Will a hysterectomy and treatment affect my sexual desire and sexual functioning?

Common side effects of surgery are short-term pain and tenderness. You may feel this in the area where you were operated. This can be relieved with medication. After surgery, you may have a hard time urinating and having bowel movements. This may last for several days. Your normal activities may be limited to let the healing take place.

When the ovaries are removed, the body's source of estrogen is lost. This causes menopause to start. Symptoms of menopause are likely to start soon after your surgery. Hormone replacement therapy may be used to help with these symptoms. It can help with vaginal dryness and hot flashes. Ask your doctor whether taking hormones is right for you.

Chemotherapy involves a number of cancer-fighting drugs. These drugs affect normal as well as cancer cells. Chemotherapy may be given:

  • By mouth
  • Into a vein
  • Directly into the abdomen

It may be given to:

  • Try to kill any cancer cells that remain in the body after surgery
  • Control tumor growth
  • Relieve symptoms of the disease

Chemotherapy given into a vein is also called systemic therapy. This is because the drugs travel throughout the body in the bloodstream. Your doctor or nurse will tell you what dose you will get for each of the chemotherapy drugs. Drug doses can vary by disease and can depend on a patient's height and weight. They may also vary when they are combined with other drugs.

Some drugs work better together than alone. Often two or more drugs are given at the same time. This is called combination chemotherapy. The first-line chemotherapy treatments for ovarian cancer are combination chemotherapy. This can include:

  • Carboplatin/paclitaxel x 6 cycles
  • Carboplatin/docetaxel x 6 cycles
  • Cisplatin/paclitaxel x 6 cycles (with some of the chemotherapy given directly into the abdomen)

A chemotherapy cycle includes regular doses of a drug, followed by a rest period. Different drugs have different cycles. Your doctor will let you know what your cycle will be. Each drug has different side effects. This allows you to take a combination of drugs at higher doses. This can be done because you are not at risk for the extreme reaction that taking the same amount of only one drug would cause. Also, cancer cells can develop a resistance to drugs. By combining drugs, the chances of resistance may be decreased.

Side effects may or may not occur. Their severity will also vary. They are usually temporary. Side effects can vary depending on:

  • Individual response
  • Dose
  • Treatment schedule

Some common side effects include:

  • Nausea, vomiting, loss of appetite
  • Diarrhea
  • Fatigue
  • Numbness and tingling in the hands and feet
  • Headaches
  • Hair loss
  • Darkening of the skin and fingernails
  • A higher risk of infection
  • A tendency to bruise or bleed easily
  • Shortness of breath

Your cancer care team can help you cope with many of these side effects. You may be given drugs to treat the side effects, such as medicine to help with nausea. Your doctor or nurse will give you information about the side effects that you may have. Tell your doctor or nurse if you are taking any other medicines or have changed your medicines. Include:

  • Medications that do and do not require a prescription
  • Herbal remedies
  • Vitamins
  • Dietary supplements

The side effects of treatment can often make you lose your appetite. They may make food taste differently. You can ask to meet with a dietitian. He or she can talk to you about a healthy diet plan. Most side effects go away after you finish treatment.

Most people getting chemotherapy find that they tire easily. Many feel well enough to lead active lives. Each person and treatment is different. It's not always possible to tell exactly how you will react. Your general health and the drugs you get will affect how well you feel. You may want someone to bring you to and from your treatments.

Questions to ask your doctor:

  • What is the standard care for my type of cancer?
  • What are the benefits of chemotherapy?
  • How long will my treatment last?
  • What will chemotherapy be like?
  • What are the side effects? Is there anything I can do to relieve them?
  • How long will I feel sick?
  • Will I lose my hair?
  • Should I be on a special diet while having chemotherapy?
  • Can I exercise during my treatment?
  • When will I feel like myself again?

Clinical Trials

Clinical trials are an option for women with ovarian cancer. A clinical trial is a test of a drug in people. The test looks at the effectiveness and safety of the drug. Before joining a clinical trial the doctor will explain it to you. Patients must also sign a consent to take part. Most trials look into better ways to prevent, detect, diagnose, or treat cancer. They may also try to answer scientific questions. In the past five years, many new drugs have been shown to slow ovarian cancer growth. These include:

  • Topotecan
  • Liposomal doxorubicin
  • Gemcitabine
  • Vinorelbine
  • Oral etoposide

These drugs will need to be compared to the current standard. The current standard is paclitaxel and platinum-based therapy.

Immunotherapy boosts the body's immune system. It improves its ability to kill cancer cells. Cytokines and vaccines are used. They may help the body kill tumor cells before they turn into invasive cancers. Cytokines are substances that activate the immune system. Vaccines for infectious disease stop the illness from developing. Cancer vaccines may be used in patients in remission. They may help prevent the disease from coming back. Some of the vaccines help the immune system recognize proteins on cancer cells. These proteins are called antigens. The immune system then mounts an attack against these cells.

The Gynecologic Cancer Team has some clinical trials. Some are for vaccines for ovarian cancer. These include vaccines that are:

  • Specific - aimed at specific cancer-cell targets
  • Nonspecific - aimed at boosting overall immunity

Please ask your doctor about these options.

Clinical trials are also being done on:

  • Monoclonal antibodies
  • Intraperitoneal delivery of chemotherapy
  • Gene therapy

If you would like to know more about clinical trials, talk with your doctor.

Questions to ask your doctor?

  • What is a clinical trial?
  • Why should I go on a clinical trial?
  • How do I find out about clinical trials?
  • Are clinical trials covered by insurance?

Follow-Up Care

Patients with ovarian cancer require long-term follow-up. This is because the recurrence rate is very high. Ask your doctor how often you will need to come in for follow-up appointments. Follow-up will include a physical exam and testing of your CA-125 blood level. Other studies may also be done. It's important that you keep track of any signs of recurrence. These include:

  • Change in appetite or bowel habits
  • Nausea and vomiting
  • Weight loss/gain

Your long-term care is important to the doctors and nurses treating you. Please contact them at any point during your care if you have any questions or concerns.

Coping

Coping with ovarian cancer can be hard. Some women may find that they want help in dealing with the emotional impact of their disease. This can have an impact on them and their family. If you have questions or worries about your treatment, talk with your doctors and nurses. Let them know if you are feeling anxious or depressed. There are also many counselors who can help you.

Support groups can help some women. Support groups are made up of people who are going through or have gone through the same experiences as you. Talk to your doctor or nurse about different support groups that are available. A list of support groups is also included at the end of this booklet.

You may have questions about sexual relations. You can return to sex when desire returns and you have healed. Ask your doctor about timing. Sexual problems are common after cancer treatments, but they are treatable. If you need or would like more support and information about issues of vaginal and sexual health please talk to your nurse or doctor about The Sexual Health Program. For more information or an appointment, please call (646) 888-5076. The Sexual Health Program provides services at:

  • 160 East 53rd Street - Rockefeller Outpatient Pavilion
  • 300 East 66th Street - Evelyn H. Lauder Breast Center and MSKCC Imaging Center

You may also be worried about your job and paying your medical bills. Meeting with a social worker may be helpful. A social worker can suggest resources for:

  • Financial aid
  • Transportation
  • Home care
  • Emotional support

Social workers are members of the healthcare team. They work with your doctors and nurses and other departments. Speak to your nurse or doctor if you would like to see a social worker.

You may also wish to call Integrative Medicine. They offer complementary therapies. This includes:

  • Massage
  • Acupuncture
  • Hypnotherapy
  • Meditation
  • Visualization and other mind-body therapies
  • Music therapy
  • Nutritional counseling
  • Classes such as yoga, t'ai chi, and chair aerobics

For more information, call (646) 888-0800.

The Memorial Counseling Center is also available. They provide support for cancer patients and their families. They have services for individuals, families, and groups. They offer help with:

  • Fatigue
  • Pain
  • Insomnia
  • Distress
  • Managing stress
  • Quitting smoking
  • Improving health habits

Contact the Center at (646) 888-0100.

The Post-Treatment Resource Program (PTRP) serves those who are done with treatment. They also serve those who are living with cancer as a chronic illness. The PTRP's services address a range of concerns. These include social, practical, and personal concerns. They can provide:

  • Advice on insurance and employment issues
  • Information for caregivers
  • Information on survivorship as a single person

For more information about the PTRP, please call (646)-888-4740.

Questions to ask your insurance company:

  • What cancer treatments/care does it cover?
  • Do I need a referral from a primary care provider?
  • Do I have to pay a certain amount (co-pay) at the time of my visit?
  • Do I have an amount that I must pay before medical expenses (annual deductible) before the insurance pays for services?
  • Do I have a limit on how much is covered for medical expenses?
  • Do I need to use a specific pharmacy to get my prescriptions filled?
  • Are all in-patient and out-patient tests and procedures covered?
  • Are clinical trials covered?

One of the most difficult things after treatment is not knowing what will happen next. You may be relieved that your treatment is over. You may also be worried that the cancer will come back. When treatment ends, people often expect life to return to the way it was. This often is not the case with ovarian cancer. Anxiety and depression are not unusual. It is natural for anyone who has finished cancer treatment to be concerned about what the future holds. Many women wonder what they can do to keep cancer from coming back. Understanding what to expect after cancer treatment can help survivors and their families:

  • Plan for follow-up care
  • Make lifestyle changes
  • Stay hopeful
  • Make important decisions

Resources

Raises awareness about ovarian cancer and promotes education regarding facts, issues, and problems.

Publishes CONVERSATIONS! The Newsletter for Those Fighting Ovarian Cancer. This is a monthly international newsletter providing hope, support, and information. Survivor-to-fighter matching service available.

A consumer-led umbrella organization dedicated to educating the public and the physicians who are likely to encounter the disease first about its symptoms, as well as advocating for more research, improved treatments, and a cure.

Provide self-help programs for women with breast or ovarian cancer; free of charge. Locations in New York City boroughs. Hotlines offer peer support in English and Spanish. Services include group support, wellness programs, Latina share, education and advocacy efforts, and study of alternative/whole health issues.

Programs include Look Good…Feel Better, Hope Lodge, Reach to Recovery, Road to Recovery, and TLC. Dedicated to eliminating cancer as a major health problem, prevention, saving lives, and diminishing suffering, by means of research, education, advocacy, and service.

A free, nonprofit program in which people with cancer and their families and friends join with others to build social and emotional support as a supplement to medical care in a nonresidential, homelike setting.

Provides free professional counseling, support groups, education and information, and referrals to cancer patients and their families to help them cope with the psychological and social consequences of cancer.

Provides a nationwide toll-free telephone service that answers questions and sends out booklets about cancer. Includes information about cancer treatment, screening, prevention, and supportive care.

Provides information about specific types of cancer, updates on cancer treatments, and news about research advances

Provides professionally-led support groups nationwide and education, stress management, and social networking in a homelike community setting with a focus on enhancing health and well-being.