OCRF & Ovarian Cancer National Alliance are now one strong, united, inspiring voice!
Ovarian Cancer Research Fund (OCRF) and the Ovarian Cancer National Alliance (OCNA) have led the way in advocacy, research and support for patients and their families for over 22 years. As of January 2016, we are pleased to announce we are joining together to form Ovarian Cancer Research Fund Alliance (OCRFA), the largest global organization dedicated to advancing ovarian cancer research while supporting women and their families. Read the exciting news!


Facing Life With Ovarian Cancer

Finding a doctor: Find a doctor, particularly a gynecologic oncologist, with whom you feel comfortable. It is very important to remove as much as cancer as possible during the initial surgery, and gynecologic oncologists have more expertise in surgery for ovarian cancer, and its subsequent treatment, than general physicians, surgeons, or ob/gyns. Also, you will have to be able to talk to your doctor about many intimate details about your life, such as surgery scars, nausea, constipation and sexual concerns. While most women diagnosed with ovarian cancer are near or at menopause, younger women who have their ovaries, fallopian tubes and uterus removed go through early menopause, which can be devastating in addition to everything else. Learn to be honest about your medical issues, and know that whatever you say to the doctor will be accepted and respected. If you need to change doctors, do so. If you live in a rural area, try to find a gynecologic oncologist in a nearby major medical center who can help coordinate your care with a medical oncologist, a doctor who specializes in chemotherapy, in your local hospital.

Get a second opinion: Even doctors sometimes feel they need to get a second opinion on the results of the pathology report after surgery. So you should feel you have the right to get a second opinion, if you want one.

Get as much information as you need but not too much: For some women, reading all the books, websites and even scientific literature about ovarian cancer gives them a sense of empowerment about their disease and helps them cope. But other women don’t necessarily want to know so much, or are overwhelmed by the complexity of medical information. Know your limits and accept them. If you aren’t comfortable reading medical information, you might want to ask a friend or loved one to do research for you.

Here are some recommended questions to ask your doctor about ovarian cancer, surgery and treatment.

Accept the feelings you have: People might say to you not to be depressed or stressed, or to be tough or positive when you are dealing with your disease. While they might mean well, having a cancer diagnosis can make you depressed and on edge, and you cannot always be strong or upbeat. Accept your feelings. But if depression does last for more than two weeks, you may, however, want to seek psychiatric help. You need your mind and your body to fight your disease.

Surround yourself with people who will support you: Many women with ovarian cancer say they quickly found out whom amongst their family and friends were really there for them. Some people have a negative outlook and only see doom and gloom, which may not be constructive to a patient coping with her disease. It can be very burdensome to have to cheer up a friend or relative who gets upset because you are ill. If friends and relatives are not managing your illness well, you have to find ways to rely on those who are able to help.

How to get the help you need: The way to get help from people is to be specific in telling them what you want. Ask them, for example, to bring you food, babysit, walk the dog, come with you to chemotherapy, or take you to a doctor’s appointment and even sit in on the appointment to listen and ask questions. Friends and relatives who mean well want to help, but they often don’t know what to do, unless you tell them.

Pay attention to your needs: Do as much as possible, but don’t overdo it. Eat when you can. If you don’t have to work, don’t, or negotiate flexible time at the office or work at home. During chemotherapy, you may need to avoid social situations that might put you at risk for getting an infection. Try to live as normal a life as possible, but if you’re not up to going to a special party or event, don’t go.

Consider going to a support group: Some women find ovarian cancer support groups helpful. In the groups, patients, family members and loved ones meet and talk about what they have learned about treatment and coping with the disease. Sometimes, though, it can be painful to be in a support group because members may have a recurrence and that can cause anxiety for the other participants. But other types of one-on-one support are available with social workers and even by telephone or on the Internet.

Try to deal with hair loss in a positive way, if you can: It is hard for most women with ovarian cancer to deal with the hair loss that results from chemotherapy. The loss of hair is such an overt manifestation of the disease. Some women cope by having a small gathering where you cut your hair or a friend cuts your hair. You may even consider donating your hair to become a wig for other women with cancer. Getting a wig with a hairstyle that is similar to yours can make you feel more like yourself again.

Don’t compare yourself to other women in treatment: You might hear from other women with ovarian cancer that they are undergoing different types of chemotherapy than you are. Because you want to do everything you can to get well, you may think you should be getting what they are getting, too. You may want to talk to your doctor about what you learned, but try to remember everyone’s treatment protocol is different.

Take the support drugs offered to you after surgery and during chemotherapy: Taking prescription pain medications can be scary because you may fear that you will develop a dependency on them. But your doctors and nurses are trained professionals that know how to prescribe these kinds of medications. If you need them, take them. Likewise, anti-anxiety or other psychoactive medications and anti-nausea drugs during chemotherapy can be very helpful, too. If you think meditation or hypnosis may help, try them.

Facing the end of chemotherapy: You may think that after you have gone through several rounds of chemotherapy and its difficult side effects, that you would be delighted it’s over. But believe it or not, finishing chemotherapy and living your life again can be very stressful and difficult for many women. During treatment, you are in battle mode: seeing your doctors and actively doing everything you can to fight your cancer. But when chemotherapy is over, it can be a few months before your next appointment, and all of sudden you might get scared being on your own and worried that every sign or symptom may be a recurrence. Don’t be afraid to call your doctor if you have a medical problem, or to reach out for support for your anxiety. The National Cancer Institute provides information about facing life after treatment of cancer.

Don’t shy away from sex: It is natural to be worried about how ovarian cancer could affect your sexuality. After surgery, it will take some time for the upper part of the vagina to heal. For those women who were premenopausal before the surgery, the loss of libido and vaginal dryness result from the removal of ovaries can be difficult to deal with. These symptoms are similar to those that occur during menopause. You may need to talk to your doctor about getting a prescription for hormones to replace those lost by the removal of your ovaries. Talk to your partner about your feelings and help one another find ways to share intimacy during and after treatment, which may not always involve sexual intercourse or orgasm. Affection and love can help stir sexual feelings.

Talking to your children about ovarian cancer: Talk to children in an age-appropriate way. It is not necessary to provide too much detailed information to younger children, but older children and teens may want to know more. Children need to be reassured that it was no one’s fault that mom got cancer; that cancer is not contagious; that the family will work together to cope; and the children will be taken care of during the ordeal. If children ask you if you are going to die, a response might be: “I am doing everything I possibly can to stay alive.” The National Cancer Institute offers a booklet written for teens about coping with a parent’s cancer and offers advice about talking to children in its caregivers’ guide.

Talk to your friends and relatives about ovarian cancer or get involved in an organization: Tell women friends the signs and symptoms of the disease, such as bloating, abdominal pain or urinary problems, and make sure they see their doctor if they are concerned about their own lives. Some women find joining an organization dedicated to raising awareness about ovarian cancer or supporting research or helping women with the disease very empowering and life-affirming.

Facing recurrence: Being scared, afraid, angry and sad are normal responses to a recurrence. But remember that you faced the disease before and you can do it again. Go into action mode. Talk to people who have been through recurrence. Remember you may be able to live with cancer as a chronic condition. Treatment can improve quality of life and the amount of time you have without disease.

Think about participating in a clinical trial: Many of the medical advances we have today came about because of people participating in clinical trials. Talk to your doctor about your eligibility for trials and what the process entails. Besides potentially helping yourself to the newest developments in treatment, you are helping all future women who will face ovarian cancer.

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