11 Things to Know After Receiving an Ovarian Cancer Diagnosis
If you (or a loved one) has just been diagnosed with ovarian cancer, you’re probably feeling incredibly overwhelmed right now. While there is no list of universally applicable tips for dealing with an ovarian cancer diagnosis, we asked medical experts and an ovarian cancer survivor to share what they recommend based on their experiences.
1. Ask your doctor exactly what type, stage, and grade of ovarian cancer you have. Then ask what it all means for your prognosis.
As you may have heard, there are three main types of ovarian cancer. They differ based on the cells involved. If the cancer starts in the layer of tissue that covers the ovary, it’s epithelial ovarian cancer. If it begins in the cells that produce eggs, it’s germ cell ovarian cancer. And if originates from the cells that make hormones, it’s stromal ovarian cancer. (Additionally, experts are investigating how many ovarian cancers actually begin in the fallopian tubes.)
There are also four main stages, I to IV, depending on how advanced the cancer is. Then, there is the grade of your cancer (how much it looks like regular tissue) and tumor type (type I means the cancer grows slowly and doesn’t cause as many symptoms as type II tumors, which grow and spread more rapidly), according to the American Cancer Society (ACS).
It’s important to be clear on the nature of the cancer you have because this can inform your treatment decisions, Ursula A. Matulonis, M.D. chief of the Division of Gynecologic Oncology at Dana-Farber Cancer Institute and professor of medicine at Harvard Medical School, tells SELF. For instance, stromal ovarian cancer may only involve removing the affected ovary and fallopian tube, at least to start. Epithelial ovarian cancer is more prone to spreading, so surgery often involves removing both ovaries, fallopian tubes, and the uterus.
Having a good grasp of your diagnosis will also help guide your own research because not everything you read online about ovarian cancer will pertain to you, Rebecca Stone, M.D., gynecological oncology surgeon and assistant professor in the Johns Hopkins Medicine Department of Gynecology and Obstetrics, tells SELF. A lot depends on the specifics of your situation.
2. Try to receive care from a specialized and experienced team if you can.
“You want to make sure you’re in the right hands, because the best outcomes are when you get the best care from the very beginning,” Shannon Westin, M.D., a clinical investigator and associate professor in the department of Gynecologic Oncology and Reproductive Medicine, Surgery Division at The University of Texas MD Anderson Cancer Center, tells SELF.
Ideally, you want to get treated at a cancer care center that is high-volume (meaning they perform a lot of surgeries) and known for its expertise in ovarian cancer, Dr. Stone says. These centers typically have multidisciplinary teams that look after every aspect of the patient’s care throughout treatment.
This should also help ensure that you receive the care of a gynecologic oncologist (a physician whose entire career is focused on gynecologic cancers). There is research demonstrating that patients who receive care from these specialized doctors have a “clear improvement in survival rate,” Dr. Westin says.
High-quality cancer care centers are all over the country, Dr. Westin says. “If you're in a very small town, it may mean a several hour drive to a major medical center,” she says. “But it’s worth it because it’s your life.”
Finding a National Cancer Institute-designated cancer center is a good place to start, Dr. Matulonis says. Their goals are to provide the best possible cancer care, conduct comprehensive research, and even establish promising new treatments. There are 63 of these centers around the country that provide care to cancer patients. Find the closest one to you here.
We’d be remiss not to note that finding and accessing the best possible cancer care involves varying types of privilege, like having the time to even search for centers and the ability to travel if necessary. When it comes to the financial aspect, however, these kinds of centers are sometimes actually more affordable because you can get streamlined treatment instead of requiring treatment from multiple practices, Dr. Stone says. This can vary based on factors like your location and insurance, but it’s worth noting.
3. Try to get your treatment plan in place as soon as possible.
Ovarian cancer is often diagnosed after it has already spread past the ovary, so it’s important to begin treatment as soon as you can. "Decisions really have to be made pretty quickly,” Dr. Matulonis says.
Treatment for ovarian cancer can involve surgery, chemotherapy, and other strategies. The sequence in which it all happens depends on factors like the exact kind of cancer you have, the operability of the tumors, and your overall state of health, Dr. Matulonis says.
4. But consider getting a second opinion if you feel it’s necessary.
If you are happy with your doctor and institution, it’s not necessary to consult somebody else. But if you’re having doubts of any kind about the accuracy of the diagnosis, the competence of the provider, or the quality of care you’re going to get, you may want a second opinion, Dr. Matulonis says.
On the fence? Ask your doctor whether or not they think a second opinion would be helpful, Dr. Westin says. “I encourage patients to do that if they want to because I want them to feel confident in their care,” she says.
If you decide it’s worth seeking a second opinion but are worried about wasting time, Dr. Matulonis recommends contacting a nearby NCI-designated cancer center because they can often get patients into consults relatively quickly.
Andrea H. decided to get a second opinion after she was diagnosed with ovarian cancer in 1996. Although the second doctor offered the same diagnosis and treatment plan as the first, she says he also spent an hour walking her through everything and had a better overall demeanor. Andrea—who today coordinates the Ovarian Cancer Helpline and facilitates a support group for newly diagnosed ovarian cancer patients at SHARE, a national nonprofit for women affected by breast or ovarian cancer—ultimately went with the second doctor and has been in remission since 1997.
5. Ask if you should consider BRCA gene testing.
In certain cases, doctors will advise that you receive genetic testing to see if you have mutations in the BRCA1 or BRCA2 genes. These mutations, which make you more predisposed to developing breast cancer, ovarian cancer, and some other forms of the illness, are involved in about 15 percent of ovarian cancer cases, according to the Mayo Clinic.
Recommendations about testing for BRCA and other gene mutations vary among doctors. In general, certain factors like your family history and age of cancer diagnosis can indicate that you have a higher likelihood of a gene mutation. If you're not sure, Dr. Matulonis suggests you ask your doctor, “Is my type of ovarian cancer something associated with BRCA?”
If you are a candidate for testing, you’ll want to get that done as soon as possible, Dr. Matulonis says. It may influence your treatment plan, like having a preventive mastectomy to lower your risk of developing breast cancer. It can also indicate whether or not your family members may want to get testing, too.
Andrea found out she had a BRCA2 gene mutation in 2000, she says. Her daughter decided she wanted to get tested when she turned 25. Unlike her mother, she didn’t have a BRCA gene mutation. Even though they had opposite results, they’re both glad they decided to get the test.
6. Ask if you’re eligible for any ovarian cancer treatment clinical trials.
There are more opportunities for people with ovarian cancer to participate in clinical trials than ever before, Dr. Westin says. Many of these trials actually include the current standard of care, she explains. This means you’re getting the best evidence-based treatment available to you as well as a more cutting-edge treatment from the frontiers of research, so the drugs and therapies scientists are excited about but haven’t yet proven as effective. (For instance, Andrea actually received her BRCA testing through a clinical trial.)
Dr. Westin recommends inquiring with your doctor early on about whether you could be a good candidate for one. Visit the ACS for more information on clinical trials and how to find them.
7. Seek mental health care if you’re struggling.
It’s hard to overstate how normal it is to feel upset after finding out you have ovarian cancer. It’s also normal to feel pissed off, confused, empty, anxious, paralyzed, grief-stricken, afraid, or numb. There’s no right reaction.
“It’s a devastating diagnosis,” Andrea says. “You’ve got to feel those feelings, whatever they are. Don’t tamp down your emotions.”
If you want help processing your emotions—or simply want to be proactive about your mental health—talk to somebody. “If there's any time to get professional counseling, it’s when you're facing mortality,” Andrea says.
Because many doctors today recognize that good mental health is integral to cancer care, many centers have a team of psychologists and psychiatrists available to you from the get-go. “These are mental health professionals that specialize in these issues that come up during cancer,” Dr. Westin says. If you’re not receiving care at a center that provides counseling, you can still ask your doctor for their best advice on how to find a therapist suited for your needs.
8. Ask your support network for what you need, and remember that you’re not a burden.
Managing your cancer care in addition to everything you already have going on is a lot, to say the least. That’s why Dr. Matulonis recommends figuring out what kind of help you’re going to want from your loved ones. “People have to get friends and family in place as quickly as possible,” she says.
Depending on your circumstances, that might include things like arranging child care, getting rides to appointments, making food for your family, or walking your dog. Or maybe you’d like people to help you pass the time while you’re in the chemo suite. (“There's nothing like having friends and family who adore you there to support you,” Andrea says.)
Whatever it is you want, try not to be shy about asking for what you need. The people who love you want to help. “If you have practical concerns, now is not the time to stand on ceremony,” Andrea says. “You'd be surprised the number of people willing to step up to the plate.”
9. Take advantage of the support resources offered by your hospital, your local community, and national organizations.
Even the strongest social support network could use some reinforcements, like the social workers most cancer centers have on staff, Dr. Westin says. The other kinds of help available run the gamut, Dr. Matulonis says, from community volunteers that will clean your house or cook food for you to hospital staff whose job it is to help patients navigate insurance issues and get the best care for the lowest out-of-pocket price.
You can also locate resources online through the ACS. They have their own initiatives, like volunteer-provided transportation and a lodging assistance programming for people traveling a long way to treatment. They also have a great search engine to help you find nearby resources, along with trained cancer information specialists on call 24/7 to help you find what you need. You can reach them at 1-800-227-2345.
10. Join a support group if you feel that would be helpful.
Not everyone will want to seek outside support, especially right after being diagnosed. “Some women are processing all that’s happening to them and spending time with family and trusted friends,” Dr. Matulonis says. “Sometimes they’re not ready.”
Even if that’s not something you’re interested in at this moment, it may be a comfort to know that there are a ton of groups you can join when you’re prepared. “There's nothing like talking to somebody who’s been there,” Andrea says.
Ask your care team about ovarian cancer support groups at your medical center or in your community, Dr. Westin says. “My patients talk to each other and derive tremendous benefit from that,” Dr. Stone says. “They end up becoming friends.” If in-person meetups are not convenient for you (or just not your thing), there is also a wealth of communities to be found online or over the phone, Dr. Westin says.
Here are a few of support networks out there:
The Foundation for Women’s Cancer has an extensive list of online and local organizations for women with gynecological cancer, including ovarian.
The National Ovarian Cancer Coalition (NOCC) has a national network of local chapters and an online community.
The Ovarian Cancer Research Alliance (OCRA) has a one-on-one program called Woman to Woman that matches a survivor mentor with a current patient.
SHARE has face-to-face meetups in the New York area, an online forum, and a direct help line you can call at 1-866-537-4273.
11. Keep those survival rates in perspective.
“It can be very overwhelming to look online and see some really hard numbers,” Dr. Westin says. The most devastating figure is this: The five-year relative survival rate for ovarian cancer is 47 percent, meaning that people who get diagnosed with ovarian cancer are about 47 percent as likely as people in the general population to still be alive in five years. But it’s important to take that fact with a tremendous grain of salt.
The five-year survival rates we have today are based on people who were treated five or more years ago, the ACS explains. This means that developments in the last few years are not being reflected in the data yet, so the current survival outlook may be better than you think. A 2016 study published in Annals of Oncology looked at ovarian cancer death rates from 1970 to 2012 in various countries, finding that U.S. ovarian cancer death rates declined 16 percent between 2002 and 2012. The hope is that this trend continues.
The other thing to remember is that these numbers are overall population trends. “You're being lumped in with everyone—people older and sicker, younger and healthier, low grade and high grade, all the tumor types,” Andrea says. These numbers cannot say what’s going to happen to any one individual. As Andrea puts it, “You have to remember that you are a statistic of one.”
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