For some women, an ovarian cancer diagnosis comes after a lengthy, frustrating, stressful process, given that many don’t have observable symptoms until the cancer is in a more advanced stage. And if someone does have early symptoms of ovarian cancer, they’re often vague or nonspecific, such as changes in appetite, abdominal bloating, and abdominal/pelvic pain.
“Women with a new diagnosis of ovarian cancer have often had symptoms for months and have seen multiple medical specialists before arriving at the diagnosis,” Melissa Frey, M.D., gynecologic oncologist at NewYork-Presbyterian and Weill Cornell Medicine, tells SELF.
Aside from the sometimes exhaustive road to a diagnosis, ovarian cancer comes with other challenges—like feeling a great deal of uncertainty, in part because the majority of women with ovarian cancer are diagnosed when the cancer is already in an advanced stage. (Only an estimated 20 percent of ovarian cancers are diagnosed at an early stage, according to the American Cancer Society.)
But the best people to speak to these hurdles are those who have experienced them firsthand. So, SELF interviewed three inspiring survivors about how they handled the most difficult parts of having ovarian cancer, and how they pushed forward during treatment with a positive outlook. Their best advice, below.
1. Allow yourself to lean on family and friends.
For 69-year-old Mary Stommel, from Virginia Beach, a strong support system was crucial in helping her deal with her biggest challenges following her diagnosis of ovarian cancer. But it took her some time to let people in to help: “I like my independence, and it wasn’t easy to ask others for help in completing everyday tasks," she tells SELF.
On the days she was feeling down, she made a point of calling her kids or siblings. “They were more than willing to listen and offer words of encouragement. My family was a constant support for me and took turns sitting with me during my chemotherapy treatments," Stommel says. "They made arrangements for meals and house cleaning because there were so many times when I just couldn't manage even the easiest daily routine things.”
However, you may find yourself in a situation where a loved one doesn't know what to do or say. "Most patients I work with have the experience of one close friend who surprised them by not stepping forward to be there for them and one acquaintance who they did not know as well who did step up," Bonnie A. McGregor, Ph.D., a licensed clinical health psychologist who specializes in helping people cope with cancer and chronic illness, tells SELF. "It is important to be aware that friends and family members are having their own feelings about your diagnosis and the changes in relationship dynamics," she says, adding that friends and family may be experiencing their own grief at the thought of losing you.
It's also important to be specific in your requests for support, McGregor says. "For example, you can tell your friends that you would like to hear about what is going on in their day."
2. Give yourself permission to feel all of your emotions, but create boundaries for your fear.
Initially, Stommel tried to stay strong in front of everyone, despite feeling fearful. “I didn’t want to look weak and I didn’t want anyone to feel sorry for me,” she says.
But it's important for people with ovarian cancer to be authentic with what they are feeling," McGregor says. So you don't have to force yourself to smile through it and fake optimism if it doesn't feel genuine in that moment.
In fact, a fearful reaction after a diagnosis and throughout the journey is completely normal. “This can be very unsettling as a woman was previously completely healthy and then suddenly learns she has an advanced and aggressive cancer,” Dr. Frey says.
That said, you don't want to let fear and anxious thoughts consume you day in, day out—which is why working with a mental health professional can be a great tool. "There are cognitive behavioral techniques we can use to help women with inaccurate or distorted thoughts," McGregor says.
Benedict Benigno, M.D., director of gynecologic oncology at Northside Hospital Cancer Institute in Atlanta, encourages his patients to keep time spent on fearful thoughts to a minimum. “I ask my patients to allow only four fifteen-minute periods a day in which thoughts of these problems are allowed to be entertained,” he tells SELF.
3. Try to maintain a sense of humor.
Another piece of Stommel’s advice for anyone going through treatment for ovarian cancer is to allow yourself to smile and laugh through it when you can. “I needed to laugh and stay positive instead of focusing on the negative,” she says. “A good sense of humor has always helped me in difficult times.” She even wore costumes to every chemotherapy treatment: “It not only made me happy, but the other patients would laugh and smile and even take pictures.”
One aspect of ovarian cancer treatment that may be difficult to feel light-hearted about is losing your hair after chemotherapy, Dr. Benigno says, as it can contribute to a loss of identity. He recommends finding a great wig if that is of interest to you, and seeing it as a chance to change and play around with your image.
4. Keep up with your hobbies and interests to help maintain a sense of normalcy.
For Leslie Medley-Russell, 52, from Houston, Texas, it was important that her ovarian cancer diagnosis didn’t become the biggest part of her life. “I continued to motor through life as usual,” she tells SELF.
As an Ironman triathlete, her version of normal involved training and racing throughout her treatment, with the support of her doctor and entire medical team. “I had moments that I didn’t feel great,” she says. “But I knew it was temporary, and I could see the light at the end of the tunnel.”
And you don’t need to be a triathlete to benefit from exercise following a cancer diagnosis physically and mentally. “Even a 30-minute walk every day will help,” Medley-Russell says. “I honestly believe I didn’t suffer as so many do because I continued to exercise.”
Dr. Benigno agrees that maintaining normalcy is important for dealing with the mental stress of an ovarian cancer diagnosis and treatment. He recommends continuing to work, if possible, and advocates making plans for the future, with a focus on fun. “I ask my patients to purchase a large calendar that has a different picture for each month and to begin to pencil in things to do that are fun, from taking piano lessons to planning a great trip,” he says.
This is exactly what 56-year-old Kym Roley, from Honolulu, Hawaii, did after her ovarian cancer diagnosis. “My husband and I took the opportunity to take some trips that we had been putting off for a while,” she tells SELF. “Don't wait until something like this happens before you do the things you want to do!”
You may find that it's difficult to find the energy to do the things you want to do at points, McGregor notes. "I think of it like money: You need to budget your energy and invest wisely. It is helpful to do as much as you can, but also be careful with where you spend your energy." So try to find that healthy balance between taking care of yourself, getting the rest you need, and also making time for things that give your life meaning, like family, friends, work, or hobbies, she suggests.
5. Be an active participant in your health care.
It was important for Roley to educate herself about her illness. “I wanted to know every detail,” she says. “I think knowledge is power and the more information I could get, the better prepared I was to fight.”
When her cancer came back for a second time, requiring further surgery, radiation, and chemotherapy, Roley felt better prepared thanks to her breadth of knowledge of the illness. “I keep a huge folder of my medical information, and I still study up on current cancer-fighting drugs and move forward with positivity,” she says.
Dr. Frey encourages patients to have frequent, open, and honest communication with their gynecologic oncologist. In a qualitative study published in the journal Gynecologic Oncology in 2014, Dr. Frey and her team found that all of the 22 ovarian cancer survivors in the study focus group said that communication with their physician about things like goals, perceptions, and values was an essential element in determining their treatment course. However, only 14 percent of the group reported that this type of discussion occurred for them regularly.
6. Be proactive about taking care of your mental health after treatment is over.
"It's important for you and your friends and family to know that everything does not just go back to normal when treatment is done. Friends and family will want this; they want this disease to be over," McGregor says. But even if treatment is over and you've recovered physically does not mean that you will have already recovered emotionally.
"Many cancer patients are surprised to learn that a cancer diagnosis and treatment can take an emotional toll that does not make itself known until later," she continues. "I have had patients come in to my office three years after the end of treatment saying, 'My doctor says my cancer is gone, my family says I should be happy, why do I feel so sad?'"
Getting support for emotional healing is important, and you may want to connect with a mental health professional to help you learn stress management techniques as well as to cope with the fear of recurrence, McGregor explains. (She co-created an online stress management and workshop called Living WELL for ovarian cancer survivors who have recently completed treatment.)
Everyone’s experience after a cancer diagnosis is different, of course.
But the overwhelming message from Stommel, Medley-Russell, and Roley is clear: Take the diagnosis as an opportunity to work out what really matters to you.
“Yes, there were challenges, but more than anything, I learned so much about myself through the experience that it definitely outweighed the negative,” Leslie says. “I always say that challenges make us stronger, and help us to appreciate life that much more.”