The very first things to do when you get an ovarian cancer diagnosis

Receiving a cancer diagnosis is never easy, but ovarian cancer can be particularly unsettling. Nearly 70% of women with this type of cancer don’t know they have it until it’s reached an advanced stage, according to the National Ovarian Cancer Coalition (NOCC). But there are steps you can take right away to help you on your journey from diagnosis to treatment. Julian Schink, M.D., chief medical officer and chief of the division of gynecologic oncology for Cancer Treatment Centers of America in Chicago, offers the following advice on the very first things to do when you get an ovarian cancer diagnosis.

Understand the extent of the cancer

This should happen as soon as possible after your diagnosis because it’s the information that drives your care. It starts with knowing the cancer’s stage. Stages range from I to IV, with stages III and IV indicating advanced disease. For example, a stage III ovarian cancer has moved outside of the pelvis, into the abdomen lining or the upper abdomen.

“The [treatment] goal is to get all the cancer out,” Dr. Schink says. Knowing the scale of its spread will help determine whether surgery, chemotherapy, or a combination of the two will be the best option. It will also determine whether you’ll get surgery or chemotherapy first.

“During the initial evaluation, the two questions you’re asking are: Where else is the cancer? And can it be completely removed surgically up front?” he adds. “If it can, then that’s the treatment. But if [surgery is not] straightforward, then the treatment is probably chemotherapy [to start]. There’s a decision tree on the front end.” Don’t hesitate to ask all of the questions you may have until you fully understand your situation.

Select an oncologist

It may seem counterintuitive, given that you’ve already seen a physician for this issue. But here, specialization matters: Women treated by a gynecologic oncologist have better survival rates and lower rates of the cancer returning, according to the NOCC. Such physicians are specifically trained in cancers of the female reproductive system, as opposed to medical oncologists, who are trained in cancer care more generally.

“Some women don’t have access to that level of care and may start with a medical oncologist. That’s okay,” Dr. Schink says. “But at some point early on, you’ll want to see a gynecologic oncologist at a treatment center that sees a reasonable volume of ovarian cancer cases — 50 or more a year. That way you can be confident that they will have the skill to manage and surgically remove the cancer and be experienced enough to make appropriate decisions about chemotherapy.” If you don’t have convenient access to a large cancer center or a gynecologic oncologist, you may be able to use telehealth to see a specialist who will coordinate with your local doctor.

Build an oncology team you trust

Your care team will include many different providers. To get an idea of who you’ll want on your side, reach out to your patient advocate or navigator. Nurses, physician assistants, nutritionists, and social workers will likely all be working to make sure you’re supported during treatment.

They’ll be able to help you find everything from support groups to financial help, if you need it. Remember, no question is too big or too small. Ask for what you need, and your team will be there to get you an answer.

Be an advocate for yourself

Your health care practitioners may be the medical experts, but you know yourself best. “Treatments can have varying levels of risk and side effects,” Dr. Schink says. So, before treatment starts, talk about any specific fears you have, what is unacceptable for you, and your level of risk tolerance.

Once treatment begins, keep the exchange of information flowing. Many side effects, such as nausea, can be managed with medication, but your doctors can’t help you if they don’t know what you’re experiencing. “You need to be in a therapeutic relationship with your oncology team,” Dr. Schink says. “That includes really figuring out what your values are and helping you decide what side effects and treatments are acceptable to you.”

Consider seeking out a mental health professional

Any medical diagnosis can bring on a bout of anxiety or depression. Don’t hesitate to talk to your oncologist or primary care doctor about the way you’re feeling. They can refer you to a mental health provider to help you process your emotions, or they may suggest that you join a support group for people going through cancer treatment.

Enlist a strong support system

Ovarian cancer is life altering, and its treatments can be hard, physically and emotionally. A close-knit support system can ease some of the struggle. “When mom is sick, the whole family is sick,” Dr. Schink explains. “The whole family is likely going on this trip together.” But you and your family do not have to go through it alone. Don’t hesitate to ask friends and family members to pick up your kids from school, drop off dinner, or take you to your appointments. Your loved ones will be grateful that you let them help.