Frequently Asked Questions about Vulvar Cancer

This information was provided by the Gynecologic Cancer Foundation. www.thegcf.org.

Q: What is vulvar cancer?
A: Vulvar cancer is cancer that starts in the vulva. The vulva is the outer part of the female reproductive system. It includes the skin folds under the pubic hair that protects the urethra and vagina. Vulvar cancer is rare. It represents only about 4% of all female reproductive organ cancers. If it is found in its early stages, vulvar cancer is highly curable.

Q: Who gets vulvar cancer?
A: About 3,490 women in the U.S. will be diagnosed with vulvar cancer this year. The majority of women with vulvar cancer are older than 50. Half are older than 70 at the time they learn they have it. However, 15% of people diagnosed with vulvar cancer are younger than 40.

Q: What are the risk factors for vulvar cancer?
A: Certain factors can make you more likely to get vulvar cancer. These are called risk factors. The fact you have one or more risk factors does not mean you will get vulvar cancer. In fact, you can have all of the risk factors and still not get the disease. Or, you can have no known risk factors and get vulvar cancer. Doctors are not sure what causes vulvar cancer. But the following are some possible risk factors:

  • Age. Women older than 50 are more at risk for squamous cell carcinoma. That is the most common type of vulvar cancer.
  • HPV infection. Human papillomaviruses (HPV) are a group of viruses that can cause genital warts. Women infected with HPV may be more at risk for vulvar cancer.
  • Smoking. Smoking increases your risk for vulvar cancer. If you smoke and have genital warts, you are at an even greater risk for vulvar cancer.
  • Vulvar intraepithelial neoplasia (VIN). This condition causes a change in the cells on the surface of the vulva’s lining. Women with VIN may be more likely to develop vulvar cancer.
  • Lichen scierosus. Women with this condition have vulvar skin that is itchy and thin. They are at a slightly higher risk of getting vulvar cancer.
  • Family history of melanoma. Women with a family history of melanoma or atypical moles have a higher risk of getting a melanoma of the vulva.
  • Chronic inflammation of the vulva. Chronic infections of vulvar skin, caused by poor hygiene or infections, may also be a risk factor for vulvar cancer.
  • HIV infection. Women with human immunodeficiency virus (HIV) are more at risk for vulvar cancer.
  • Low socioeconomic status. Many women with low incomes may not have access to medical care. Researchers believe this may prevent these women from seeing a gynecologist. This may partially explain the link between low income and increased risk for vulvar cancer.

Q: What are the symptoms of vulvar cancer?
A: You can have vulvar cancer without having any symptoms. It is also important to know that the symptoms of one type of vulvar cancer are very similar to the symptoms of (VIN) dysplasia. This is also called vulvar intraepithelial neoplasia. Here are some common symptoms of vulvar cancer:

  • Vulvar itching that does not improve
  • Change in skin color or feel of vulva
  • Red, white, or wartlike bump or sore on the vulva
  • Pain when urinating
  • Burning or bleeding and discharge not related to the menstrual cycle
  • Enlarged glands in the groin
  • A new mole or a change in a mole’s size or appearance, including irregular color or borders

Q: How is vulvar cancer diagnosed?
A: Any woman who is suspected of having cancer of the vulva should have a complete medical examination. Tests may be necessary in order to know for sure. These are the most common tests doctors use to make a diagnosis of vulvar cancer.

  • Clinical history and physical exam. The doctor will ask questions to learn detailed information about your symptoms, personal and family history, and risk factors for vulvar cancer. A thorough physical exam includes a Pap test and a pelvic exam. These can also help rule out other problems.
  • HPV test. HPV is short for human papillomavirus. In rare cases, HPV can cause vulvar cells to change and become precancerous. Your doctor can test for HPV at the same time as a Pap test.
  • Colposcopy of the vulva. For this test, the doctor uses a tool called a colposcope. This tool magnifies cells of the cervix, vagina, and vulva. It allows your doctor to select suspicious looking spots of tissue to remove and examine. This is called a biopsy.
  • Biopsy. The doctor may take a small piece of tissue from the vulva. A pathologist looks at it under a microscope to check for cancer cells.

Q: Should everyone get a second opinion for vulvar cancer?
A: Many people with cancer get a second opinion from another doctor. There are many reasons to get a second opinion. Here are some of those reasons.

  • Not feeling comfortable with the treatment decision
  • Being diagnosed with an invasive or rare type of vulvar cancer
  • Having several options for how to treat the cancer
  • Not being able to see a cancer expert

It may help to have a second doctor review the diagnosis and treatment options before starting treatment. It is important to remember that in most cases, a short delay in treatment will not lower the chance that it will work. Some health insurance companies even require that a person with cancer seek a second opinion. And many other companies will pay for a second opinion if asked.

Q: How can someone get a second opinion for vulvar cancer?
A: There are many ways to get a second opinion.

  • Ask a primary care doctor. A primary doctor may be able to recommend a specialist such as a gynecologic oncologist, medical oncologist, radiation oncologist, or plastic surgeon. Sometimes these doctors work together at cancer centers or programs.
  • Call the Gynecologic Cancer Foundation (GCF) hotline. The number is 1-800-444-4441. They can help callers find a gynecologic oncologist for a second opinion. Or use the “Find a Doctor” tool at the Women’s Cancer Network to search for a gynecologic oncologist by zip code. This site was developed by GCF.
  • Call the National Cancer Institute’s Cancer Information Service. The number is 1-800-4-CANCER (1-800-422-6237). They have information about treatment facilities, including cancer centers and other programs supported by the National Cancer Institute.
  • Consult the Official ABMS Directory of Board Certified Medical Specialists. This reference book by the American Board of Medical Specialists lists doctors by state and specialty. It also gives information about their background. It is available at most public libraries. It can also be viewed online at www.abms.org.
  • Seek other options. Check with a local medical society, a nearby hospital, a medical school, or local cancer advocacy groups. Or talk with other women who’ve had vulvar cancer. Ask them for names of specialists who can give you a second opinion.

Q: How is vulvar cancer treated?
A: The treatment choices for each woman depend on the type of vulvar cancer, the results of lab tests, and the stage or extent of the cancer. A doctor also considers a woman’s age and general health when making recommendations about a treatment. The most common way to treat vulvar cancer is with surgery and radiation. Sometimes women also get chemotherapy.

Q: What’s new in vulvar cancer research?
A: Cancer research gives people hope. Doctors and researchers around the world are learning more about what causes vulvar cancer and are studying ways to prevent it. They are always finding better ways to detect and treat this cancer. Currently, researchers are studying both prevention and treatment of vulvar cancer. Here are some of the areas they have targeted.

  • Certain kinds of genes and how changes in them cause the vulvar cells to become cancerous
  • Ways to vaccinate women against certain viruses that may lead to cancer
  • Photodynamic therapy, which is a new treatment in which drugs are used to make the tumor sensitive to light and then light is used to kill the cancer cells
  • Ways to identify which lymph nodes are affected by cancer. Doctors do this by examining a single special lymph node near the cancer site called the sentinel node. This is the first lymph node to which cancer cells are likely to spread from the primary tumor.

Q: What are clinical trials?
A: Clinical trials are studies of new kinds of cancer treatments. Doctors use clinical trials to learn how well new treatments work and what their side effects are. Promising treatments are ones that work better or have fewer side effects than the current treatments. People who participate in these studies get to use treatments before the U.S. Food and Drug Administration (FDA) approves them. People who join trials also help researchers learn more about cancer. That helps future cancer patients.