Life after ovarian cancer: Coping with side effects, fear of recurrence, and finding support
By Nicole Brudos Ferrara
Diagnoses and death rates for ovarian cancer have decreased in recent years, and the number of people living with and beyond the disease is increasing.
Returning to the life you lived before ovarian cancer can be challenging. Treatment comes with short- and long-term side effects — some of which may be permanent. You also may find yourself worrying about ovarian cancer’s high recurrence rate.
Megan Grudem, a Mayo Clinic nurse practitioner, has been treating people with gynecologic cancer for more than 12 years. Here's how she helps her ovarian cancer patients cope with side effects and fear of recurrence and find support:
Coping with short-term side effects
Ovarian cancer treatment generally involves a combination of surgery and chemotherapy. Genetic testing determines if additional treatment is needed. "If genetic testing reveals that a patient has a BRCA mutation, they're eligible for maintenance medications called PARP inhibitors. Those are given to patients after chemotherapy for about two years to try to keep them in remission," says Grudem.
Chemotherapy comes with side effects that vary from person to person. "Short-term side effects include muscle and joint aches. Patients can get weak legs during treatment. They can also get peripheral neuropathy, numbness and tingling in the fingers and toes. Nausea, vomiting, fatigue, and lack of appetite are other possible side effects,” says Grudem.
Ovarian cancer and its treatment also can affect the bowels. "(The cancer) often sits on the outside of the bowels, so bowel issues are the most common thing we deal with," says Grudem. "Some patients have diarrhea or constipation, but probably the most serious side effect we see is bowel obstruction. We tell them, 'If you can't have a bowel movement and you have nausea or vomiting, that can be a sign of a bowel obstruction.'"
When her patients struggle with bowel issues, Grudem sets them up with an individualized bowel regimen. "We talk about using stool softeners daily — those can be used for life if needed. If they have diarrhea, we talk about anti-diarrheal medications and how to prepare for a night out or going out of town. And we talk about bowel obstruction precautions."
If you’re experiencing any of these issues, talk to your care team. Many short-term side effects can be treated to improve your quality of life.
Coping with long-term side effects
Grudem says most long-term side effects begin in the short term and become long-term. For example, the effects of chemotherapy can linger for months. "Peripheral neuropathy is sometimes permanent, and the bowels and bladder may not normalize for a year.
"Chemo brain" is the term used to describe thinking and memory problems that can occur during and after cancer treatment. "Some patients have chemo brain for a long time. They have short-term memory issues, trouble coming up with the names of things or certain words," says Grudem.
A topic Grudem says isn't discussed enough is the effects of treatment on sexual health. "A lot of people with ovarian cancer have trouble with sexual intercourse and sexual intimacy after treatment, and they don't always bring it up. It's a hard topic."
If a person has had an oophorectomy, a surgery to remove one or both ovaries, hormone levels change dramatically. "Some of them go into menopause right away. Surgery sometimes makes the vagina smaller, and all those tissues are dry, so intercourse is more difficult and painful. Sometimes they don't have the desire for sex, so relationships can be more difficult," says Grudem.
Grudem says many of these issues can be treated. If you experience any of these side effects, talk to your care team. They can help.
Coping with fear of recurrence
The high recurrence rate of ovarian cancer is partly because in 8 out of 10 cases, the disease is diagnosed after it has spread outside the ovaries. There is no screening tool, and the disease rarely causes noticeable symptoms in early stages. Later, when the cancer has progressed and symptoms become noticeable, they are often mistaken for more common health conditions.
"Most patients I see are stage three or four at diagnosis, and 80% of them will have a cancer recurrence," says Grudem. "It's a hard thing to start living your life again when you know the cancer is probably coming back."
Grudem says living in the present is an important part of coping with the fear of cancer recurrence. "I tell patients, 'None of us is guaranteed tomorrow. Try to get back into life and live without thinking about cancer. Try to get back to a little bit of normalcy.'"
If patients are struggling to return to regular activities, Grudem offers to connect them with a psychologist who can help them develop coping strategies. When anxiety about recurrence leads to trouble sleeping, she says care teams can prescribe medication to help patients sleep.
The transition from treatment to survivorship can be particularly challenging. Grudem says patients tell her, "Now that I'm done with chemotherapy, I'm uneasy because I'm not doing anything to actively fight the cancer." Survivors must avoid dwelling on the possibility of recurrence while also maintaining awareness of symptoms they should bring up to their care teams.
"Little fleeting pains aren't a big deal. But if they have any new pain that comes on and doesn't get better, changes in bowel and bladder habits that are significant, or if something just doesn't feel right, we'll walk them through it," says Grudem.
Connecting with people who have been through ovarian cancer treatment can be especially beneficial for the recently diagnosed. "Friends and family don't always understand everything because they haven't been through it themselves," says Grudem. "We have an advocacy group called the Minnesota Ovarian Cancer Alliance (MOCA). They offer mentors — other women who have been through the ovarian cancer journey." Ask your care team if they can refer you to similar groups in your area.
Grudem has this recommendation for caregivers, family and friends of ovarian cancer survivors: "Be good listeners and know that just because the patient is done with chemotherapy, things don't pop back to normal. It's a slow process."
Survivors and their supporters also must grapple with the difficult truth that recovery may not lead to life as it was before ovarian cancer, she says. "Things are different going forward. It's a daily journey. Try to help them get back into life."
Grudem encourages ovarian cancer survivors to return to daily routines as much as possible, regardless of prognosis. "It's about getting back into regular life — trying to be a healthy individual living with cancer, or a healthy individual who has survived cancer, even if some lasting side effects mean learning to adapt to a new normal."
Join the Gynecologic Cancers Support Group on Mayo Clinic Connect.
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