Life After Ovarian Cancer

Though ovarian cancer affects only 1 in 78 American women in their lifetime, it ranks fifth in cancer deaths among women and has the greatest ratio of mortality among gynecological malignancies.

It is considered one of the most deadly cancers because it's difficult to detect early on, when survival rates are higher.

Given the seriousness of an ovarian cancer diagnosis—66 percent of which are more advanced third or fourth stage, and for which survival rates average 39 percent and 17 percent, respectively—many women battling the disease are focused only on surviving.

Happily, advancements in ovarian cancer treatment contributed to the 2.3 percent annual decline in ovarian-cancer-related deaths from 2009 to 2018. But for women who have beaten it, life after ovarian cancer may still involve great challenges.

Overview of ovarian cancer

Ovarian cancer is caused by the uncontrolled growth of abnormal cells in the ovaries, the almond-sized ova- or egg-producing organs located on either side of a woman's uterus.

While the root cause of ovarian cancer isn't entirely clear, a number of risk factors have been identified: being older, a smoker or a breast, ovarian or colorectal cancer survivor; having family history of one of those cancers; having genetic mutations (including BRCA1, BRCA2) or syndromes, taking hormone replacement therapy (HRT), beginning menstruation before age 12 or menopause after age 55, and not having a full-term pregnancy before age 35. Poor diet and physical inactivity may also contribute.

Early symptoms are often vague and nonspecific, including abdominal pain, bloating or swelling, indigestion, feeling full quickly when eating, decreased appetite, bowel changes, weight loss, increased urination or urinary urgency, pelvic or back pain, pain during sex, menstrual irregularities or abnormal vaginal discharge.

Beyond an annual pelvic exam, ovarian cancer screening is not recommended for a woman at average risk. Abnormal findings may prompt more specific screenings, including transvaginal ultrasounds and blood tests to look for cancer proteins (such as cancer antigen 125). Having certain risk factors makes those recommended tests regardless.

A tissue sample obtained by biopsy can be tested for cancerous cells to confirm diagnosis. Treatment typically includes surgery, which may range from removal of one or both ovaries to removal of fallopian tubes, nearby lymph nodes and the uterus, or more extensive procedures in advanced cases.

Chemotherapy is commonly recommended to kill cancer cells missed by surgery and to reduce risk of recurrence. In very advanced cases, chemotherapy may be recommended before surgery to reduce tumor size and make possible a less-invasive surgery.

Emotional impact

A diagnosis of ovarian cancer is an emotional blow that may stir up an array of feelings—fear, anger, sadness, vulnerability—and the long-term effects of both the disease and the treatment add to the toll. Dealing with loss of female reproductive organs, potentially lower fertility or infertility, early menopause, sexual health problems and decreased body confidence can be overwhelming.

Many symptoms can make it difficult to continue with normal daily activities and lead to the sensation that life is on hold. Working may be impossible. Social outings may be too much. Physical health may seem like a priority during a battle with ovarian cancer, but mental health is equally important. A 2019 study published in Medicine studied 228 female patients and found that their depression and anxiety scores were nearly 10 percent higher in women with ovarian cancer compared to healthy controls.

How do you know when it's time to ask for help? Staying in tune with your mental health and taking note of how your cancer has impacted your well-being can key you in. Ask yourself any of these "ifs": if your energy is low, if your symptoms are causing you to lose interest in normal activities, if you've felt distressed, if you're concerned about mental health issues.

Have other changes coincided with those, such as sleep disorders, weight loss or negative thoughts about yourself? If you notice a significant difference, reach out to a mental health provider, or ask your oncologist for a referral. If you feel comfortable doing so, open up to family, friends or a partner. Talking with someone you trust can be of great benefit.

Make plenty of time for self-care, stress relief and relaxation. And cut yourself a break—cancer is a terrible burden, and you are no less of a person for stumbling along the way.

Sex after ovarian cancer

Women who have undergone a hysterectomy and most other surgical treatments should avoid sex for four to six weeks afterward, to protect stitches where the cervix and uterus were removed.

After healing, some women may have a slightly shorter vagina, which may cause sex to feel a bit different for her or her partner. For women who experience surgical scarring, sex can be painful.

Removal of the ovaries causes decreased estrogen levels, which can lead to vaginal dryness and itchiness, and decreased vaginal elasticity, all of which make sex uncomfortable. Additionally, many women report decreased libido.

Chemotherapy causes multiple side effects, including fatigue, weight and hair loss and nausea, all of which are likely to make sex unappealing, and the decreased estrogen levels it causes add to vaginal discomfort. Radiation and other treatments can cause fatigue, and targeted therapies can cause vaginal inflammation and soreness. Hormone therapies also stop estrogen production.

While side effects subside for most patients, having sex right away is probably not the first thing on a woman's mind. A 2004 study published in the Journal of Clinical Oncology found 47 percent of women with advanced ovarian cancer reported little to no sexual desire, and 80 percent experienced vaginal dryness.

Furthermore, according to a 2017 study from the International Journal of Gynecological Cancer, 50 to 70 percent of women experience sexual dysfunction after gynecological cancers, including difficulty achieving orgasm, vaginal soreness or dryness, pain during sex, sexual dissatisfaction or decreased sexual desire.

As a result, you may find your interest in sex taking a while to come back. Be open with your partner about how you're feeling: If you're on the same page, you'll feel less awkward about not wanting to have sex, and they'll know your lack of interest isn't personal.

As with mental health, speak with a healthcare provider or therapist about what's going on. A sex therapist can be immensely helpful at troubleshooting, and lubricants and creams can decrease vaginal symptoms. Explore different ways to be intimate with your lover, such as oral sex, massage, cuddling or trying other special activities together. While it may feel hopeless at your lowest point, a thriving sex life after ovarian cancer is possible. Take care of yourself and practice self-love.

Long-term care

To screen for cancer and increase the likelihood of catching a recurrence early on, your doctor will recommend a survivorship care plan, a long-term plan of follow-up care and other recommendations to maximize your odds of staying healthy.

This typically includes frequent pelvic exams for five or more years and additional follow-up screenings, including transvaginal ultrasounds and blood tests. Ongoing treatment, such as hormone therapy, may be ordered.

Following your doctor's recommendations is essential to boosting your chances of survival.

Unfortunately, recurrence remains a real possibility for all women. The likelihood of recurrence varies based on the individual, type and location of cancer, treatment and the body's response to it, and other factors. Average recurrence for stage I, II, III and IV ovarian cancers is 10, 30, 70 to 90, and 90 to 95 percent, respectively. Your doctor will explain your individual recurrence risk, how it is calculated and what you can do to minimize it.

Lifestyle choices post-cancer

A number of lifestyle changes, along with sticking to your survivorship care plan, may improve prognosis. Research suggests a primarily whole-food, plant-based diet high in fruit, vegetables and whole grains and low in processed foods and red meat can significantly reduce recurrence risk. Physical activity also plays a significant role.

A 2016 study from Cancer Epidemiology, Biomarkers & Prevention found that women who did not engage in physical activity were 34 percent more likely to develop ovarian cancer compared to those who exercised regularly. Another 2016 study, from the British Journal of Cancer, reported a 22 to 34 percent increased mortality risk (independent of weight) for ovarian cancer for physically inactive women compared to women who engaged in some physical activity.

Cutting back or avoiding smoking altogether can significantly reduce the odds of cancer recurrence. For premenopausal women, oral contraception may also help reduce risk.

Cancer may feel like an insurmountable obstacle, but women who beat it can attest that there is life after ovarian cancer. Take care of yourself, follow your doctor's recommendations and enjoy every day.