Ovarian cancer is often diagnosed at a late stage, making it harder to treat successfully. And that makes it an especially scary diagnosis. That also makes it especially important to find out all you can about your options.
Unfortunately, there’s a lot we don’t know about this cancer, including how best to find it early, when it’s most treatable (the PAP test does not detect ovarian cancer, only cervical cancer).
The resources below can help you get started in understanding your diagnosis. We’ve organized them into categories to make it easier to find what you need. And we try to limit them to just a few in each category, to avoid overwhelming you.
As you read, you may have questions that these sites don’t answer. Although you should talk with your doctor about them, you can also do more research on your own. Of course, online searches turn up lots of good and not-so-good (and even downright terrible) results. Check out our research tips page to help you find and recognize other quality sources.
Ovarian Cancer Overviews
These overviews present information on what ovarian cancer is, what symptoms you might have, treatment options and more.
If you’re here because you think you might have ovarian cancer, don’t try to diagnose yourself! Use these resources to learn more, but then talk with your doctor. That’s the only way to know for sure.
Ovarian Cancer Overview from the American Cancer Society: This page has a well-organized list of common questions on topics ranging from risk factors and diagnosis to treatment and advice on talking with your doctor. You can also download the guide as a PDF file.
Mayo Clinic’s Ovarian Cancer Overview: Offers a quick overview of symptoms, types (there are three) and what to expect during diagnosis and treatment.
Organizations Devoted to Ovarian Cancer
Many local organizations exist to help promote awareness and help women cope with an ovarian cancer diagnosis. The following are national organizations that have local partners or chapters where you can find information and support.
Ovarian Cancer National Alliance (OCNA): The OCNA was founded in 1997 when five ovarian cancer organizations across the country banded together. Today the alliance advocates for research funding to improve detection and survival as well as offering support and education to patients and loved ones.
National Ovarian Cancer Coalition (NOCC): NOCC works to promote education about this cancer. The best chance of early diagnosis is recognizing the vague symptoms, and this organization wants to make sure women know what they are. It also offers support to patients and caregivers.
Ovarian Cancer Awareness Foundation (OCAF): OCAF’s stated goal is to “introduce the words ‘ovarian cancer’ to the female population by providing them with information they need…”
Finding Clinical Trials in Ovarian Cancer
Clinical trials are important for finding out how diagnostic procedures and treatments work in real patients. If you think you may want to participate in one, it’s important to start looking at your options right after your diagnosis. Some trials do not accept people who have already received certain treatments. Others want patients who have not responded to certain treatments.
When considering a clinical trial, it’s important to realize that there are different kinds of clinical trials. Although many are looking at new treatments, others address different aspects of the disease, like diagnosis or pain management.
The Foundation for Women’s Cancer offers answers to some Frequently Asked Questions about being part of a clinical trial.
OCNA Clinical Trials Navigating Service: This site has a database of clinical trials for ovarian cancer or more general cancer-related trials that include ovarian cancer patients. It includes the trials from the National Cancer Institute’s database, too. You can also talk with one of OCNA’s clinical trial navigators who will help you figure out which trials are a good fit for you. This help is free.
Ovarian Cancer Trials on ClinicalTrials.gov: This links to a simple search for “ovarian cancer”. You have the option to narrow your search to specific types of studies, locations near you, age groups and more.
National Cancer Institute Database: This one can be a little more complicated to use than the others because it asks for a lot more information about your specific cancer, stage etc. So it might help you narrow down your options a little more quickly. Of course, that only works if you are able to fill out the search form completely (you are allowed to skip anything you’re not sure about). If you need help, you can call to talk with a cancer information specialist or try LiveHelp, the site’s online chat function. You can find the phone number and/or link to chat at the upper left on the site.
Forums and Support Groups for Ovarian Cancer
Family and friends are a wonderful support group, of course. But sometimes you just need to connect with someone who is going through (or has gone through) the same thing. Online communities and offline support groups can help.
Ovarian Cancer National Alliance Support Community: The OCNA has what appears to be a very active community of patients and family members sharing their experiences, successes and frustrations. Topics range from clinical trials, treatment and late stage to young survivors and an in memoriam section. There’s also a just-for-fun area. Because, really, sometime you just need to think about other things, even if only for a little while.
Ovarian Cancer Patient Support Group at CancerCare: This private support group is led by a social worker who specializes in working with cancer patients.
OCNA Local Partners: This page has a state-by-state (and even a few international) list of ovarian cancer groups that offer local support. You can also find profiles of some of the partner members.
Create your own at MyLifeLine.org: Create your own website where you can keep friends and family updated. You can keep it private, so only registered guests can see your updates. Or you can share it with the world. Visitors can also post messages to you.
Ovarian Cancer Helpline from SHARE: This organization has helplines specifically for ovarian and breast cancers. You can talk with survivors of your specific diagnosis.
Other Resources for Ovarian Cancer
NCI-Designated Cancer Centers: These centers can help you get the latest, top-notch treatment and/or access clinical trials being conducted at the center. If you live near one, you may want to consider getting treatment there. Or if you don’t have access to high-quality care nearby and will have to travel anyway, one of these centers might be your answer. You can find a center by state here.
Familial Ovarian Cancer Registry: This organization collects family histories of ovarian cancer patients or families with multiple diagnosed cases. They’re trying to identify genes that may make this cancer more likely and detection and treatment methods that can help prevent the disease and/or increase survival rates.
Find a Gynecologic Oncologist: If you don’t have a doctor, or you want a second opinion, you can find a specialist with this search page provided by the Foundation for Women’s Cancer.
Cancer Financial Assistance Coalition: You may qualify for help paying expenses related to your gynecological cancer diagnosis. This page lists some national organizations that may be able to help. To see if there are any regional organizations that may also help, enter your zip code.
Helping Your Kids Cope With Your Ovarian Cancer
Telling your kids about a cancer diagnosis is hard. Although you may want to protect them, it’s likely they’ll know something is wrong.
Although we didn’t find any resources specific to ovarian cancer, we did find many specific to cancer. Some discuss how parents can talk to their kids, including age-specific advice. Others are for kids themselves, including websites with easy-to-understand information, books and support groups. Find our list of cancer resources for kids here.
Caregiver Resources
If you’re caring for someone with ovarian cancer, you need support and understanding, too. Yes, you really do. If you don’t take care of yourself, you won’t be able to take care of your loved one, either.
Caregiver Helpline at SHARE: This organization has a special helpline just for caregivers of people with ovarian or breast cancer. You can talk to other caregivers who understand how you’re feeling.
The SHARE helpline is specific to ovarian cancer (or breast cancer), but you can find many more support groups and other help for people caring for someone with any cancer diagnosis. We list some on the Resources for Caregivers of Cancer Patients page.
Interesting Research on Ovarian Cancer
Although ovarian cancer gets less attention than some others, researchers continue to find new ways to approach diagnosis and treatment. In its fiscal year 2012, the National Cancer Institute was funding almost 550 studies investigating ovarian cancer or including ovarian cancer. They included studies evaluating screening methods, outcomes in specific populations and a variety of treatments or unique ways to deliver treatment.
Other organizations are also funding research. For example, the Ovarian Cancer Research Fund is a not-for-profit that has awarded more than $50 million in grants to researchers across the country.
Some promising studies (not necessarily funded by the above) include:
Does Ovarian Cancer Have a Smell?: Conditions that affect metabolism sometimes cause us to have a distinctive smell. Now scientists are exploring whether the metabolic processes of cancer, specifically ovarian cancer, might also cause us to smell.
Heat Makes Ovarian Cancer Cells Easier to Kill: Heat doesn’t kill them directly, but researchers at Oregon State University have found that heat makes chemotherapy work better against ovarian cancer cells.
BRCA1 and BRCA2 mutations and ovarian cancer: The so-called “breast cancer genes” also increase risk of ovarian cancer. Now scientists are beginning to understand why.
DNA tags could help in choosing the best treatment: Certain tags or markers on genes known to be associated with ovarian cancer may be able to predict which drugs will work best for a particular patient.
Counting immune cells might help predict survival: Your body tries to fight the tumor with special immune cells. More immune cells often means living longer. That information can also help choose the best treatment.