Ovarian cancer is a cancer that originates in the ovaries - the two almond-shaped organs located in a woman's pelvis on either side of the uterus (womb). There are many different types of ovarian cancer at a cellular level but by far the most common is epithelial ovarian cancer which develops from the cells on the surface of the ovary. About 1 in 57 women in the United States will develop ovarian cancer during their lifetime. Most cases occur in women over the age of 50 but younger women can also have ovarian cancer and need to be aware of this disease and its symptoms.
About 23,300 women will be diagnosed with ovarian cancer in the United States in 2002 and there will be approximately 13,900 deaths from the disease during that year. Although the incidence of ovarian cancer is much lower than other types of cancer ovarian cancer is the 5th leading cause of cancer deaths among women. Most of this high rate of mortality can be attributed to the fact that in the majority of cases ovarian cancer is not diagnosed until it is at an advanced stage. Five year survival rates for ovarian cancer detected in Stage I or II can be greater than 90% while five year survival rates for those whose cancer is not detected until it is Stage III or IV range from 10-20%.
But there is good news about ovarian cancer too. Incidence rates have been declining - although slowly and by a small percentage - over the past few years. Five year survival rates continue to increase and there are promising early detection tests on the horizon. Ovarian cancer received SPORE (Specialized Programs of Research Excellence) grants from the National Cancer Institute in 1999. Four institutes in the United States - MD Anderson in Texas, Fox Chase Cancer Center in Philadelphia, the University of Alabama in Birmingham and the Fred Hutchinson Cancer Center in Seattle - received $5.85 in first year funding to pursue research into "developing prognostic, screening, prevention, and therapeutic tools for ovarian cancer".
Perhaps the best news though is the increasing numbers of dedicated advocates that are helping to raise awareness of the disease among all levels of society (the general public, women at increased risk, family physicians and other health professionals). Often these advocates are women who have been diagnosed with ovarian cancer and want to help reduce (and eventually eliminate) the suffering caused by the disease. Many other advocates are those who have a loved one with (or have lost a loved one to) ovarian cancer. Whatever their reason for speaking out and whatever they can manage to do we applaud those women and men who are helping in the struggle to raise awareness of ovarian cancer, support those diagnosed, increase the pace of research and speak for the patient when they cannot speak for themselves.
The rest of this page will help you understand more about ovarian cancer as well as give you resources that go into further detail on various topics. If you or someone you love has been diagnosed with ovarian cancer you don't have to go it alone - there are groups out there that can help you talk about the impact of the disease on your life, help you cope and provide advice that is so meaningful because it's coming from someone that's 'been there'.
To learn more about ovarian cancer simply click on any of the questions below. At the end of each answer you'll find a 'return to the list of questions' link. Simply click on it to return to the list of questions.Many people and many medical textbooks still hold the erroneous opinion that there are no symptoms. Our experience and the literature is beginning to show that there are symptoms:
Symptoms are often associated with the location of the tumor and its impact on the surrounding organs. They tend to be non-specific and can mimic non-gynecologic conditions such as irritable bowel syndrome, etc. Many of us experience these symptoms from time to time - do not be alarmed! But if they persist and are unusual for you, then seek a professional opinion.
©Ovarian Cancer National AllianceRisk Factors
All women are at risk for ovarian cancer, but the Alliance believes it is important for women (and their healthcare providers) to be aware of those factors that may put them at higher risk for the disease. These factors include the following:
Diagnostic Tools:
There are several diagnostic tests that can be used to detect ovarian cancer. The three most common tools are:
Because of the margin of error associated with each of the tests, they are most effective when used in combination with each other.
Other diagnostic tools include:
Surgical Biopsy:
The only way to confirm a diagnosis of ovarian cancer suggested by the above tests is through examining a sample of the tumor tissue under a microscope. There are several surgical techniques that can be used to obtain a sample tissue. The procedure used will depend on many factors and will ultimately be decided by the surgeon.
For further information see:
Standard treatment
Risk Reduction
Though many of the risk factors are out of a woman's control, there are ways to reduce women's risk of getting the disease. Researchers theorize that each ovulation creates an opportunity for a cancer-causing mutation to occur, thus mechanisms to reduce these opportunities in effect reduce risk. At this time, it is impossible to completely eliminate a woman's risk for ovarian cancer, but experts have established that the following can reduce risk of ovarian cancer:
A comparable reduction for "high risk" women is not as definitive. Recent studies surrounding the risk reduction value of oral contraceptive use in women who carry the BRCA1 or BRCA2 gene mutation have published conflicting results. While a 1998 study reports that oral contraceptives reduce risk for women with BRCA1 or BRCA2 genetic mutations, a study published in July 2001 found that oral contraceptives do little to reduce risk in these women. Further research is required to determine the effect of oral contraceptives on women with BRCA1or BRCA2 mutations.
Clearly these methods are not appropriate for all women. Each individual must assess the risks and benefits of these factors with the assistance of her health care professional to determine if she should take action.
©Ovarian Cancer National Alliance
Source: Ovarian Cancer National Alliance - General Interest - Risk Reduction
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Biological Therapy
Also referred to as immunotherapy, biotherapy, or biological response modifier therapy, uses the body's immune system either directly or indirectly to fight cancer or decrease the side effects that may be caused by some cancer treatments.
These agents include Biological Response Modifiers (BRMs), Interferons, Interleukins, Colony Stimulating Factors, Monoclonal Antibodies (MOABS), and tumor vaccines. The body has a natural ability to protect itself against disease, including cancer. Researchers have found that the immune system may recognize the difference between healthy and cancer cells in the body and eliminate those that become cancerous. Biological therapies are designed to repair, stimulate, or enhance the immune system's natural anticancer function.
source: National Cancer Institute/CANCERNET
Gene Therapy
Within each cell exists a chromosome, and inside each chromosome are genes which control the pattern of cell growth. It is theorized that cancer is the result of either inherited or acquired changes in genes. These changes may allow the cell to grow in an abnormal fashion and develop into cancer. Gene therapy, which is in its formative stages, is a novel approach to treating disease based on the modification of the expression of an individuals gene toward a positive therapeutic outcome.
source: Institute for Human Gene Therapy/University of Pennsylvania Health System
Angiogenesis Inhibitors
Angiogenesis means the formation of new blood vessels. Angiogenesis is a process controlled by certain chemicals produced in the body. These chemicals stimulate cells to repair damaged blood vessels or form new ones. Other chemicals, called angiogenesis inhibitors, signal the process to stop. Because cancer cannot grow or spread without the formation of new blood vessels, scientists are working toward finding ways to stop angiogenesis in the hopes it will cause the cancer to shrink and die.
source: National Cancer Institute/CANCERLIT
National Cancer Institute
Officials at the National Cancer Institute (NCI) determine the allocation of research funds among the various types of cancer. Congress, however, can encourage increased expenditures in certain areas such as ovarian or breast cancer research, and may recommend areas warranting increased attention.
Congress once again has increased NCI's budget for FY 2001 by appropriating over $400 million dollars more than last year. To keep this momentum going, the Alliance will continue its work with other cancer organizations to increase NCI's budget for FY 2002.
Department of Defense (DoD) Ovarian Cancer Research Program (OCRF)
Congress approved $12 million for the OCRP for FY 2001 - maintaining the funding level of the previous year.
Annual funding for the OCRP is a top priority for the Alliance. The Alliance will call upon members of the ovarian cancer community to contact members of Congress about the urgent need to increase the level of funding for the OCRF for FY 2002. Please visit our website on a regular basis to find out how you can help us with this campaign.
Centers For Disease Control and Prevention (CDC)
For FY 2001, the Alliance worked closely with Rep. Rosa DeLauro (D-CT) to designate $2.6 million for CDC (more than double from last year). CDC's funds are used for research and projects on early detection, underserved and minority communities, and public and professional education about ovarian cancer.
This is a large, comprehensive bill addressing the reauthorization of NASA and its programs for three consecutive years. In the science, aeronautics and technology department of NASA, Congress has proposed $2 million for research and early detection for breast and ovarian cancer. The Alliance will work closely with Congress to ensure that the $2 million is appropriated to this newly-created research program.
WHY DO IT?
Offical government proclamations are routinely used to raise ovarian cancer awareness. State and local governments issue these proclamations when they are requested by organizations such as OCNA.
There are several benefits of obtaining an official state proclamation declaring September as Ovarian Cancer Awareness Month. Proclamations:
County and city governments may also be powerful allies in increasing ovarian cancer awareness. Obtaining a proclamation from them can be as beneficial as getting a state proclamation. It can help ovarian cancer groups become better known to the policymakers in their community and can involve local policymakers in their efforts.
GETTING STARTED
It is very important to start this process as soon as possible because it could take several months to accomplish your goal. It is helpful to have the proclamation in your hands by August in order to kick off your media campaign by mid-August.
ACOR is the acronym for the Association of Cancer Online Resources. This non-profit website sends out millions of e-mails to subscribers with various kinds of cancer worldwide. Presently there are about 1,200 women (and men) subscribed to the Ovarian Cancer discussion mailing list. You subscribe by e-mail (on the subscription page) and depending on how you set up your subscription you'll either receive individual e-mails from other list members or one or two digests (a collection of e-mails) a day. The list is a fantastic resource for discussing all kinds of issues around ovarian cancer - reactions to different types of chemotherapy, helpful tips for dealing with fatigue, neuropathy and nausea, advocacy issues and the latest research. Women with ovarian cancer and their supporters (spouses, friends, daughters, sons, sisters, brothers, mothers, fathers - whatever) are welcome to join this free service.
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CONVERSATIONS!: Support Group Listing www.ovarian-news.org/supportgroups.html
Eyes on the Prize www.eyesontheprize.org/index.html
Gilda's Clubwww.gildasclub.org
Kids Konnected (for children with a parent who has cancer) www.kidskonnected.org/html/about_us.html
NCI: Coping Information for People with Cancer cancernet.nci.nih.gov/coping.html#toc4
NCI: Support and Resources for People with Cancer cancernet.gov/support_resources.html
National Family Caregivers Association www.nfcacares.org
Ovarian Cancer Problem Discussion List www.acor.org
The Wellness Community www.wellnesscommunity.org
The term patient advocate is a relatively new one and may mean different things to different people. In the context of this site we use the term to mean a person - whether diagnosed with ovarian cancer, a support person for a woman diagnosed with ovarian cancer or simply a concerned and interested individual with no connection with the disease - who volunteers his or her time and efforts to improve outcomes for women diagnosed with ovarian cancer.
Advocacy work can take many forms it can be participating in conferences and other public events to raise awareness of ovarian cancer, it can be writing to legislators to ask them to endorse bills to increase funding for ovarian cancer research, it can be taking part in evaluating research proposals from a patient's point of view and much more. If you are interested in advocacy there are thousands of tasks to work on and there's sure to be one or more that will fit with the time you have available and your particular interests and talents.
You might find it interesting to read about William Hawley, a physician who has become a patient advocate (although not for ovarian cancer) and his ideas on the role of a patient advocate and how advocacy has assisted him in dealing with his own illness. If you'd like to get involved with ovarian cancer advocacy in your area here are some links to investigate: