Rare Gynecologic Cancers

Columbia provides specialized care for people with rare and complex gynecologic cancers. Because these cancers are uncommon, patients often benefit from evaluation and treatment by a multidisciplinary team experienced in diagnosing and managing rare tumor types.

Your care is tailored to your diagnosis, the type and stage of cancer, your overall health, and your treatment goals. Our gynecologic oncologists work closely with specialists in medical oncology, radiation oncology, pathology, radiology, genetics, fertility preservation, and supportive care to develop a personalized treatment plan.

As part of the Herbert Irving Comprehensive Cancer Center, patients may also have access to advanced molecular testing, precision medicine, and clinical trials that may not be available at other centers.

What Are Rare Gynecologic Cancers?

Rare gynecologic cancers are uncommon cancers that develop in the female reproductive system. They may begin in the uterus, ovaries, cervix, vagina, vulva, fallopian tubes, peritoneum, or other reproductive tissues.

Although these cancers are uncommon, they represent many different diseases. Each behaves differently, and treatment depends on the specific type of cancer, where it began, and whether it has spread.

Because these cancers are seen less often, diagnosis and treatment can be more complex. Patients frequently benefit from care provided by specialists with expertise in rare gynecologic cancers.

What Are the Types of Rare Gynecologic Cancers?

Rare gynecologic cancers may include:

• Uterine sarcoma
• Fallopian tube cancer
• Ovarian germ cell tumors
• Ovarian sex cord-stromal tumors
• Gestational trophoblastic disease
• Gynecologic melanoma
• Neuroendocrine tumors
• Small cell carcinoma
• Other uncommon gynecologic tumors

Your care team will explain your diagnosis, discuss your treatment options, and answer any questions you may have about your specific type of cancer.

What Causes Rare Gynecologic Cancers?

Rare gynecologic cancers develop when abnormal cells grow and divide uncontrollably. The exact cause is often unknown.

Some rare cancers are associated with inherited genetic changes, persistent HPV infection, previous radiation therapy, hormonal factors, pregnancy-related tissue changes, or abnormal cell changes that develop over time. However, many people diagnosed with a rare gynecologic cancer have no identifiable cause.

What Are the Risk Factors for Rare Gynecologic Cancers?

Risk factors vary depending on the type of cancer but may include:

• Persistent HPV infection
• A history of cervical, vaginal, or vulvar precancer
• Inherited genetic conditions
• A strong family history of cancer
• Previous pelvic radiation therapy
• Smoking
• Older age
• A weakened immune system
• A previous molar pregnancy for certain gestational trophoblastic tumors

Having one or more risk factors does not mean you will develop cancer. Your healthcare provider can help you understand your individual risk based on your medical and family history.

What Are the Symptoms of Rare Gynecologic Cancers?

Symptoms depend on where the cancer begins and the type of tumor.

Symptoms may include:

• Abnormal vaginal bleeding
• Bleeding after menopause
• Bleeding after sex
• Unusual vaginal discharge
• Pelvic or abdominal pain
• Persistent bloating
• Feeling full quickly when eating
• A lump, sore, or skin change involving the vulva or vagina
• Pain during sex
• Changes in urination or bowel habits
• Unexplained weight loss
• Fatigue

Many of these symptoms can also be caused by conditions other than cancer. If symptoms are new, persistent, or worsening, it is important to seek medical evaluation.

When Should I See a Doctor?

You should see a healthcare provider if you have abnormal vaginal bleeding, persistent pelvic pain, bloating, unusual vaginal discharge, skin changes involving the vulva or vagina, or other symptoms that do not improve.

You should also ask about genetic counseling if you have a strong family history of gynecologic, breast, ovarian, colon, or other inherited cancers.

How Are Rare Gynecologic Cancers Diagnosed?

Rare gynecologic cancers are diagnosed using a combination of physical examinations, imaging studies, laboratory testing, and biopsy.

Tests may include:

• Pelvic examination
• Pap test
• HPV test
• Colposcopy
• Ultrasound
• Endometrial biopsy
• Tissue biopsy
• Blood tests
• Tumor marker testing
• CT scan, MRI, or PET scan
• Genetic counseling and testing
• Molecular tumor profiling in selected cases

A biopsy is needed to confirm the diagnosis. Additional testing helps determine the type of cancer, whether it has spread, and which treatments may be most effective.

How Are Rare Gynecologic Cancers Treated?

Treatment depends on the type of cancer, where it began, the stage of the disease, your overall health, and your treatment goals. Your care team will develop a personalized treatment plan based on your specific diagnosis.

Treatment may include:

• Surgery
• Minimally invasive or robotic-assisted surgery
• Radiation therapy
• Chemotherapy
• Hormone therapy
• Immunotherapy
• Targeted therapy
• Fertility-preserving treatment in selected cases
• Clinical trials

Treatment planning for rare gynecologic cancers often includes molecular tumor profiling and genetic testing to identify targeted therapies or clinical trials that may be appropriate for a particular cancer.

Because these cancers can be complex, your care may be reviewed by specialists from multiple disciplines to ensure that every treatment option is carefully considered.