Newly Diagnosed With Ovarian Cancer: First Steps

Your paperwork may say ovarian epithelial cancer, fallopian tube cancer, or primary peritoneal cancer. The National Cancer Institute (NCI) explains why that varies: these three "form in the same type of tissue and are treated the same way."

NCI notes that cancer "sometimes begins at the end of the fallopian tube near the ovary and spreads to the ovary," and that it can also begin in the peritoneum, the lining of the abdominal wall.

So if a doctor says fallopian tube cancer and someone else says ovarian, they are not contradicting each other. Ask which term will appear on your records, so insurance and referrals stay consistent.

There are also other, rarer ovarian tumors, including germ cell tumors and low malignant potential tumors, which NCI covers separately. Confirm which category is yours before reading anything else.

For 2026 the American Cancer Society projects 21,010 new ovarian cancer cases in the United States and 12,450 deaths; SEER, NCI's statistics program, publishes that projection alongside its own data. Five-year relative survival across all stages is 52.0%.

Stage at diagnosis drives almost everything. Among women diagnosed between 2016 and 2022, SEER reports 22% found while still confined to the ovary, with five-year relative survival of 91.9%. Another 18% have reached regional sites, at 70.1%. And 54% are found after spread to distant sites, at 31.5%.

Read that last pair together. More than half are diagnosed at the hardest stage. That is not a personal failure, and it is not a reason to stop reading.

NCI is blunt about it. Ovarian, fallopian tube, or peritoneal cancer "may not cause early signs or symptoms. When signs or symptoms do appear, the cancer is often advanced."

The symptoms NCI lists are: "pain, swelling, or a feeling of pressure in the abdomen or pelvis. Sudden or frequent urge to urinate. Trouble eating or feeling full. A lump in the pelvic area. Gastrointestinal problems, such as gas, bloating, or constipation."

Every item on that list is also a normal bad week. What separates them is persistence. NCI's guidance is that if signs "get worse or do not go away on their own," get checked.

NCI lists a physical exam and health history, a pelvic exam, a CA-125 blood test, and ultrasound, which may be abdominal or transvaginal. Imaging may include CT, PET, and MRI.

One caution about CA-125. NCI describes it as "a substance released by cells into the bloodstream," and notes that "an increased CA-125 level can be a sign of cancer or another condition such as endometriosis." It is not a yes or no test. Ask what your number is and what your team will compare it against later.

This is the part most people are not warned about. In ovarian cancer, surgery does not just remove disease. It determines your stage, and that determines your treatment.

NCI lists the components: hysterectomy, unilateral or bilateral salpingo-oophorectomy (removing one or both ovaries and tubes), omentectomy (removing the omentum, the fatty apron of tissue in the abdomen), and lymph node biopsy.

Look at what NCI says qualifies as stage IC. Cancer inside one or both ovaries or tubes, plus any one of these: "the tumor ruptured (broke open) during surgery," or the outer capsule ruptured beforehand or cancer sits on the surface, or "cancer cells are found in the fluid of the peritoneal cavity... or in washings of the peritoneum."

Two of those three depend on how the operation is performed and whether washings are collected at all. That is the concrete reason to have a gynecologic oncologist do this surgery, ideally before any tumor is removed elsewhere.

• Stage IA. Cancer inside a single ovary or fallopian tube.
• Stage IB. Inside both ovaries or both tubes.
• Stage IC. Inside one or both, plus rupture, surface disease, or positive peritoneal fluid or washings.
• Stage IIA. Spread to the uterus, tubes, or ovaries.
• Stage IIB. Spread to other organs in the peritoneal cavity, such as the colon.
• Stage III. Spread outside the pelvis to other parts of the abdomen, or to nearby lymph nodes.
• Stage IV. Spread to distant parts of the body.

NCI describes systemic chemotherapy, given by mouth or into a vein, which reaches the whole body. It also describes a regional option specific to this disease: intraperitoneal (IP) chemotherapy, in which "the anticancer drugs are carried directly into the peritoneal cavity... through a thin tube."

NCI also mentions hyperthermic intraperitoneal chemotherapy (HIPEC), warmed chemotherapy delivered into the abdomen during surgery, and notes it "is being studied for ovarian cancer."

If IP or HIPEC comes up, ask what evidence supports it in your exact situation and what the added side effects are.

NCI names bevacizumab, a monoclonal antibody that binds vascular endothelial growth factor (VEGF) and "may prevent the growth of new blood vessels that tumors need to grow." It may be used with chemotherapy for cancer that has recurred.

Then there are PARP inhibitors, which NCI describes as drugs that "block DNA repair and may cause cancer cells to die." It names olaparib, rucaparib, and niraparib as PARP inhibitors that "may be used as maintenance therapy to treat certain types of ovarian epithelial cancer, fallopian tube cancer, or primary peritoneal cancer that have recurred." Veliparib is listed as being studied with chemotherapy.

Maintenance means a drug taken after chemotherapy ends, to hold the disease down. It is a long-haul commitment, and it is worth asking early: which maintenance drug, for how long, and based on which tumor test.

NCI states that "hereditary ovarian cancer makes up about 20% of all cases," and describes three hereditary patterns: ovarian cancer alone, ovarian and breast cancers, and ovarian and colon cancers.

Named causes include inherited changes in BRCA1 or BRCA2, and Lynch syndrome, also called hereditary nonpolyposis colorectal cancer. Other risk factors NCI lists are a first-degree relative with ovarian cancer, endometriosis, postmenopausal hormone therapy, obesity, and tall height.

Two reasons this cannot wait. Your result may steer maintenance therapy. And it changes what your sisters, daughters, and mother should do. NCI notes that in high-risk women, risk-reducing removal of healthy ovaries "has been shown to greatly decrease the risk of ovarian cancer."

Confirm the exact diagnosis name and cell type. Ask whether your surgeon is a gynecologic oncologist. Ask whether peritoneal washings will be taken. Ask whether surgery comes first or chemotherapy comes first, and why. Get both germline genetic testing and tumor testing ordered. Ask what your CA-125 was at baseline. Ask who to call about bowel symptoms, since bowel obstruction is the emergency to know about in this disease.

Bowel obstruction is the emergency this disease is known for, so it is worth knowing what it looks like before it happens.

• Call 911 or go to an emergency department if you stop passing stool and wind altogether, your abdomen is distended and painful, and you are vomiting repeatedly. MedlinePlus treats that combination as a blockage until proven otherwise.
• Call your care team the same day if vomiting keeps coming back, cramping abdominal pain builds in waves, or your abdomen swells noticeably over a day or two. Also call if you cannot pass urine.
• Call your care team within a day or two if bloating, early fullness or constipation is getting steadily worse rather than settling, since NCI's advice is to be checked when these do not go away on their own.

See also Ovarian Cancer Treatment by Stage, BRCA Mutation in Ovarian Cancer, and PARP Inhibitors.

• https://www.cancer.gov/types/ovarian/patient/ovarian-epithelial-treatment-pdq
• https://seer.cancer.gov/statfacts/html/ovary.html
• https://medlineplus.gov/ency/article/000260.htm
• https://www.cancer.org/research/cancer-facts-statistics.html