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Frequently Asked Questions

The information below is for reference and informational purposes only, not the opinion or recommendation of GOCA. Any questions you have regarding cancer diagnosis and treatment options need to be addressed by your medical professionals.

For everyone

• Why should I be concerned about ovarian cancer?
• Is ovarian cancer hereditary?
• How does cancer form in the body?

For newly-diagnosed ovarian cancer patients

• What is ovarian cancer?
• I was recently diagnosed with ovarian cancer and I have large tumors in my abdominal cavity. Before the surgery, my oncologist wants me to have chemotherapy to shrink the tumors. Is this a common practice?
• Why do some treatments work for some women with ovarian cancer but not for others?
• I've just finished chemotherapy for ovarian cancer. I have many symptoms of recurrence, but all my tests come back negative. How can this be?
• I know I'm supposed to eat well during treatment, but the chemotherapy makes me feel nauseated and I don't have an appetite. What can I do?
• I am a single person living alone and I'm worried that when I start treatment, I won't have the strength to perform basic tasks, like cooking or dressing. I have friends, but they all have their own busy lives. How do I get help?
• Is there financial assistance for cancer patients?
• What about rural areas? Is there local support and medical resources for me?
• My wife was diagnosed with cancer, and we have two young children at home. How do we explain her illness to them?
• I'm a caregiver and will need to take time off from my job to care for my loved one. Things are tough enough as it is, and with more medical costs, I'm afraid of being fired and losing income. What rights do I have in the workplace?

For everyone

Why should I be concerned about ovarian cancer?
About 1 in every 72 women in the United States will develop ovarian cancer. Most cases occur in women over the age of 50, but this disease can also affect younger women. Ovarian cancer causes more deaths than any other cancer of the female reproductive system. The sooner ovarian cancer is found and treated, the better a woman's chance for recovery. But ovarian cancer is hard to detect early. Many times, women with ovarian cancer have no symptoms or just mild symptoms until the disease is in an advanced stage. Scientists are studying ways to detect ovarian cancer before symptoms develop.

Is ovarian cancer hereditary?
Inherited cases of ovarian cancer account for approximately 10% of all new cases. A woman can inherit an increased risk for ovarian cancer from either her mother's or father's side of her family, particularly if a first-degree relative (mother, father, sister, or daughter) has, or has had ovarian, breast, prostate or colon cancer. Furthermore, women with a strong family history of ovarian cancer are more likely to develop the disease at an early age (younger than 50). Women of Ashkenazi (Eastern European) Jewish descent are also at greater risk if they have an affected family member. Studies show that inheriting a defect in the BRCA1 or BRCA2 gene can also increase a woman's risk of developing ovarian cancer by about 10% to 40%. Normally, these genes help to prevent cancer, but if a woman has inherited a mutated BRCA1 or BRCA2 gene, her ovaries and breasts are more susceptible to the development of cancer. A woman's lifetime chance of developing breast and/or ovarian cancer is greatly increased if she inherits an altered BRCA1 or BRCA2 gene. Women with an inherited alteration in one of these genes have an increased risk of developing these cancers at a young age (before menopause), and often have multiple close family members with the disease. These women may also have an increased chance of developing colon cancer.

Men with an altered BRCA1 or BRCA2 gene also have an increased risk of breast cancer (primarily if the alteration is in BRCA2), and possibly prostate cancer. Alterations in the BRCA2 gene have also been associated with an increased risk of lymphoma, melanoma, and cancers of the pancreas, gallbladder, bile duct, and stomach in some men and women.

How does cancer form in the body?
Scientists have learned that cancer is caused by changes in genes that normally control the growth and death of cells. Certain lifestyle and environmental factors can change some normal genes into genes that allow the growth of cancer. Many gene changes that lead to cancer are the result of tobacco use, diet, exposure to ultraviolet (UV) radiation from the sun, or exposure to carcinogens (cancer-causing substances) in the workplace or in the environment. Some gene alterations are inherited (from one or both parents). However, having an inherited gene alteration does not always mean that the person will develop cancer; it only means that the chance of getting cancer is increased. Scientists continue to examine the factors that may increase or decrease a person's chance of developing cancer.

Although being infected with certain viruses, such as the human papillomavirus (HPV), hepatitis B and C (HepB and HepC), and human immunodeficiency virus (HIV), increases the risk of some types of cancer, cancer itself is not contagious. A person cannot catch cancer from someone who has this disease. Scientists also know that an injury or bruise does not cause cancer.

For newly diagnosed ovarian cancer patients

What is ovarian cancer?
Ovarian cancer is a disease in which malignant or cancerous cells are found in the ovary. An ovary is one of two small, almond-shaped organs located on each side of the uterus that produce female hormones and store eggs or germ cells. In women age 35 to 74, ovarian cancer is the fifth leading cause of cancer-related deaths. An estimated one woman in 55 will develop ovarian cancer during her lifetime.

Types of ovarian tumors

Many types of tumors can start growing in the ovaries. Most of these are benign (non-cancerous) and never spread beyond the ovary. Benign tumors can be treated successfully by removing either the ovary or the part of the ovary that contains the tumor. Ovarian tumors that are not benign are malignant (cancerous) and can spread (metastasize) to other parts of the body. Their treatment is more complex and is discussed later in this document. In general, ovarian tumors are named according to the kind of cells the tumor started from and whether the tumor is benign or cancerous. There are 3 main types of ovarian tumors:

• Epithelial tumors start from the cells that cover the outer surface of the ovary. Most ovarian tumors are epithelial cell tumors.
• Germ cell tumors start from the cells that produce the ova (eggs).
• Stromal tumors start from connective tissue cells that hold the ovary together and produce the female hormones estrogen and progesterone.

Epithelial ovarian tumors

Benign epithelial ovarian tumors: Most epithelial ovarian tumors are benign, do not spread, and usually do not lead to serious illness. There are several types of benign epithelial tumors including serous adenomas, mucinous adenomas, and Brenner tumors.

Tumors of low malignant potential: When looked at under the microscope, some ovarian epithelial tumors do not clearly appear to be cancerous. These are called tumors of low malignant potential (LMP tumors). They are also known as borderline epithelial ovarian cancer. These differ from typical ovarian cancers in that they do not grow into the supporting tissue of the ovary (called the ovarian stroma). Likewise, if they spread outside the ovary, for example, into the abdominal cavity, they do not usually grow into the lining of the abdomen.

These cancers tend to affect women at a younger age than the typical ovarian cancers. LMP tumors grow slowly and are less life-threatening than most ovarian cancers. Although they can be fatal, this is not common.

Malignant epithelial ovarian tumors: Cancerous epithelial tumors are called carcinomas. About 85% to 90% of ovarian cancers are epithelial ovarian carcinomas. When someone says that they had ovarian cancer, they usually mean that they had epithelial ovarian carcinoma. When these tumors are looked at under the microscope, the cells have several features that can be used to classify epithelial ovarian carcinomas into different types. The serous type is by far the most common, but there are other types called mucinous, endometrioid, and clear cell.

If the cells don't look like any of these 4 subtypes, the tumor is called undifferentiated. Undifferentiated epithelial ovarian carcinomas tend to grow and spread more quickly than the other types. In addition to being classified by these subtypes, epithelial ovarian carcinomas are also given a grade and a stage.

The grade classifies the tumor based on how much it looks like normal tissue on a scale of 1, 2, or 3. Grade 1 epithelial ovarian carcinomas look more like normal tissue and tend to have a better prognosis (outlook). Grade 3 epithelial ovarian carcinomas look less like normal tissue and usually have a worse outlook.

The tumor stage describes how far the tumor has spread from where it started in the ovary. Staging is explained in detail in a later section.

Primary peritoneal carcinoma

Primary peritoneal carcinoma (PPC) is a rare cancer closely related to epithelial ovarian cancer. At surgery, it looks the same as an epithelial ovarian cancer that has spread through the abdomen. Under a microscope, PPC also looks just like epithelial ovarian cancer. Other names for this cancer include extra-ovarian (meaning outside the ovary) primary peritoneal carcinoma (EOPPC) or serous surface papillary carcinoma. Primary peritoneal carcinoma develops in cells from the lining of the pelvis and abdomen (which is called the peritoneum). These cells are very similar to the cells on the surface of the ovaries. Like ovarian cancer, PPC tends to spread along the surfaces of the pelvis and abdomen, so it is often difficult to tell exactly where the cancer first started. This type of cancer can occur in women who still have their ovaries, but it is of more concern for women who have had their ovaries removed to prevent ovarian cancer.

Symptoms of PPC are similar to those of ovarian cancer, including abdominal pain or bloating, nausea, vomiting, indigestion, and a change in bowel habits. Also, like ovarian cancer, PPC may elevate the blood level of a tumor marker called CA-125.

Women with PPC usually get the same treatment as those with widespread ovarian cancer. This could include surgery to remove as much of the cancer as possible (this process is called debulking and is discussed in the Surgery section), followed by chemotherapy like that given for ovarian cancer. Its outlook is similar to widespread ovarian cancer.

Fallopian tube cancer

This is an extremely rare cancer. It begins in the tube that carries an egg from the ovary to the uterus (the fallopian tube). Like PPC, fallopian tube cancer causes symptoms similar to those seen in women with ovarian cancer. The treatment and outlook for survival (prognosis) is similar to that for ovarian cancer.

Germ cell tumors

Germ cells are the cells that usually form the ova or eggs. Most germ cell tumors are benign, although some are cancerous and may be life threatening. About 5% of ovarian cancers are germ cell tumors. There are several subtypes of germ cell tumors. The most common germ cell tumors are teratoma, dysgerminoma, endodermal sinus tumor, and choriocarcinoma.

Teratoma

Teratomas are germ cell tumors with areas that, when viewed under the microscope, look like each of the 3 layers of a developing embryo: the endoderm (innermost layer), mesoderm (middle layer), and ectoderm (outer layer). This germ cell tumor has a benign form called mature teratoma and a cancerous form called immature teratoma. The mature teratoma is by far the most common ovarian germ cell tumor and usually affects women of reproductive age (teens through forties). It is often called a dermoid cyst because its lining resembles skin. These tumors or cysts can contain different kinds of benign tissues including, bone, hair, and teeth. The patient is cured by surgically removing the cyst.

Immature teratomas occur in girls and young women, usually younger than 18. These are rare cancers that contain cells that look like those from embryonic or fetal tissues such as connective tissue, respiratory passages, and brain. Tumors that are not very immature (grade 1 immature teratoma) and have not spread beyond the ovary are cured by surgical removal of the ovary. When they have spread beyond the ovary and/or much of the tumor has a very immature appearance (grade 2 or 3 immature teratomas), chemotherapy is recommended in addition to surgery to remove the ovary.

Dysgerminoma

Although this type of cancer is rare, it is the most common ovarian cancer of germ cells. It usually affects women in their teens and twenties. Although dysgerminomas are considered malignant (cancerous), most do not grow or spread very rapidly. When they are limited to the ovary, more than 75% of patients are cured by surgically removing the ovary, without any further treatment. Even when the tumor has spread further (or if it comes back later), surgery and/or chemotherapy is effective in controlling or curing the disease in about 90% of patients.

Endodermal sinus tumor (yolk sac tumor) and choriocarcinoma

These very rare tumors typically affect girls and young women. They tend to grow and spread rapidly but are usually very sensitive to chemotherapy. Choriocarcinoma that starts in the placenta (during pregnancy) is more common than the kind that starts in the ovary. Placental choriocarcinomas usually respond even better to chemotherapy than ovarian choriocarcinomas.

Stromal tumors

About 5% to 7% of ovarian cancers are ovarian stromal cell tumors. Most of these are granulosa cell tumors. More than half of stromal tumors are found in women older than 50, but about 5% of stromal tumors occur in young girls. The most common symptom of these tumors is abnormal vaginal bleeding. This happens because many of these tumors produce female hormones (like estrogen). These hormones can cause vaginal bleeding (like a period) to start again after menopause, or can cause menstrual periods and breast development in young girls. Less often, stromal tumors make male hormones (like testosterone). If male hormones are produced, the tumors can disrupt normal periods and cause facial and body hair to grow. Another symptom of stromal tumors can be sudden, severe, abdominal pain. This occurs if the tumor starts to bleed. Types of malignant (cancerous) stromal tumors include granulosa cell tumors, granulosa-theca tumors, and Sertoli-Leydig cell tumors, which are usually considered low-grade cancers. Thecomas and fibromas are benign stromal tumors.

Ovarian cysts

An ovarian cyst is a collection of fluid inside an ovary. Most ovarian cysts occur as a normal part of ovulation (release of eggs) - these are called "functional" cysts. These cysts usually go away within a few months without any treatment. If you develop a cyst, your doctor may want to check it again after your next cycle (period) to see if it has gotten smaller. In a female who isn't ovulating (like a woman after menopause or girl who hasn't started her periods), an ovarian cyst is a little more concerning, and the doctor may want to do more tests. The doctor may also order other tests if the cyst is large or if it does not go away in a few months. Even though most of these cysts are benign, a small number of them could be cancer. Sometimes the only way to know for sure if the cyst is malignant is to take it out with surgery. Benign cysts can be observed (follow-up with physical exams and imaging tests), treated with medicines, or removed with surgery.

I was recently diagnosed with ovarian cancer and I have large tumors in my abdominal cavity. Before the surgery, my oncologist wants me to have chemotherapy to shrink the tumors. Is this a common practice?
Chemotherapy delivered before surgery — known as neoadjuvant chemotherapy — is often recommended for women whose tumors have spread into the upper abdomen, where they are difficult to remove. It may also be recommended to women who may not be able to physically withstand a long operation. Although studies have not shown that women treated with neoadjuvant chemotherapy survive as long as women who undergo surgery first, neoadjuvant chemotherapy is a reasonable option for some women. One important thing to note: It's always best to consult with a gynecologic oncologist. He or she can confirm whether the best option for you is to have surgery first or chemotherapy first. If you decide to undergo neoadjuvant chemotherapy, be sure to follow up with the surgeon who recommended it. Sometimes, women are told they don't need surgery after the chemotherapy, if the tumor shrank dramatically. But most women still benefit from at least one attempt to have a tumor removed surgically.

Why do some treatments work for some women with ovarian cancer but not for others?
It's largely due to differences in the type of ovarian cancer each woman has. All ovarian tumors may not be alike. So when two women are diagnosed with ovarian cancer, they may actually not have exactly the same disease. One woman might be cancer free for several years after a particular treatment, while another might have a recurrence several months after the same treatment. The hope is that we will someday be able to identify the differences responsible for each woman's tumor and then treat it more effectively.

I've just finished chemotherapy for ovarian cancer. I have many symptoms of recurrence, but all my tests come back negative. How can this be?
There are several possible reasons why some women have persistent symptoms of recurrence despite normal scan results and normal blood tests. One is that the original tumor, or the treatments for it, caused scarring or some other physical problems that are causing symptoms (though the cancer is gone). Or, it may be that a new tumor is located low in the pelvis, an area that is difficult to see with a scan. Your doctor may be able to identify this kind of tumor with a pelvic exam, which you should request. It's also possible that the cancer recurrence simply isn't showing up on scans and blood tests. When women have a recurrence of their tumor, new tumors usually aren't big. Often, the cancer comes back in the form of many small tumors that may not show up on CT scans and other tests. If that is what your doctor suspects, you may need more aggressive evaluation, such as surgery, to see whether some tumors are "hiding."

I know I'm supposed to eat well during treatment, but the chemotherapy makes me feel nauseated and I don't have an appetite. What can I do?
Nausea is a common side effect in cancer treatment, but it can be well managed with the help of your doctor and anti-nausea medications. Also, there are some things you can do on your own to bring relief:

• Distract yourself with music, television, or other activities you enjoy.
• Wear loose-fitting clothing that doesn't bind or add stress to your body.
• Rinse your mouth often to eliminate any bad taste.
• Avoid strong food odors, which can bring on nausea.
• Explore how your taste buds may have changed. Determine what foods taste good to you now.

I am a single person living alone and I'm worried that when I start treatment, I won't have the strength to perform basic tasks, like cooking or dressing. I have friends, but they all have their own busy lives. How do I get help?
For people with cancer who are living alone, daily chores and tasks can be especially burdensome. Perhaps you don't want to "bother" your friends or ask them to do simple tasks because it makes you feel helpless. But most of the time, friends are looking for a way to contribute to your care, even if they can't be there all the time. Try appointing one friend to be your primary caregiver, and have that person organize help from your other friends. Together, they can work as a team to bring your meals, do your laundry, or water the lawn. Having a specific task allows each friend to feel he or she is helping you. If you are not able to set up a system like this, you can also get home care assistance through your hospital, non-profit agencies, and private organizations. Many times, home care costs are covered by insurance, if part of the care involves administering medical treatment.

Is there financial assistance for cancer patients?
Yes! There are a number of organizations and institutions that offer financial aid for both medical and prescription expenses as well as unexpected expenses such as emergency child care, transportation, household tasks. Some resources are as follows:

• CancerCare 1800-813-HOPE (4673)
• Partnership for Prescription Assistance 1888-477-2669
• Social Security Administration 1-800-772-1213

What about rural areas? Is there local support and medical resources for me?
Yes! There are 6 regional alliances within the state of Georgia for rural cancer patients. They are listed below:

• Central Georgia Cancer Coalition 478-994-1914
• East Georgia Cancer Coalition 706-542-6443
• Northwest Georgia Regional Cancer Coalition 706-657-7575
• Southeast Georgia Cancer Alliance 912-350-3726
• Southwest Georgia Cancer Coalition 229-312-1700
• West Central Georgia Cancer Coalition 706-660-1914

For caregivers

I'm a caregiver and will need to take time off from my job to care for my loved one. Things are tough enough as it is, and with more medical costs, I'm afraid of being fired and losing income. What rights do I have in the workplace?
The Family Medical Leave Act of 1993 (FMLA) gives you the right to take time off if you are ill or caring for an ill dependent, without losing your job. This law:

• Applies to employers with 50 or more employees.
• Can be used to provide medical leave for people with illness such as cancer or family leave for caregivers.
• Provides 12 weeks of unpaid leave for serious illness. You don't have to take the 12 weeks all at once; you can take time in blocks, such as several hours a day.
• Allows you to use accrued paid annual leave or possibly accrued sick leave during your family or medical leave.
• Defines family members as your parent, child (including 16 adult children who are unable to care for themselves), or your spouse.
• Allows your employer to request a medical certification by a doctor or other health care provider.

To learn more about the FMLA, talk to your department of human resources.

My wife was diagnosed with cancer, and we have two young children at home. How do we explain her illness to them?
With young children, there may be a temptation to avoid discussing serious illnesses like cancer. You may not want to burden your children with all the complex worries of the disease. But the best thing you can do for them is to give them accurate, age-appropriate information about cancer. Don't be afraid to use the word "cancer" and tell them where it is in the body. If children don't get this information from their parents, they will often invent their own explanations, which are often more frightening than the facts. For example, they may think that they did something wrong to cause the cancer.

It's helpful to explain the treatment plan and what this will mean to them. For example, "Dad will bring you to soccer practice instead of Mom." Prepare your children for any physical changes you might encounter in treatment. Remember that whatever emotions your children are experiencing are normal, and they should be encouraged to express and share these emotions with you and other trusted adults.

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