Frequently Asked Questions About Vulvar Cancer

Frequently Asked Questions About Vulvar Cancer

Q: What is vulvar cancer?

A: Vulvar cancer is cancer that starts in the vulva, which is the outer part of the female reproductive system.

Illustration of the anatomy of the female pelvic area
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The vulva includes the skin folds under the pubic hair that protects the urethra and vagina. Vulvar cancer is rare, in that it represents only about 4 percent of all female reproductive organ cancers. If it is found in its early stages, vulvar cancer is highly curable. Fortunately, most cases are diagnosed in the earlier stages.

Q: Who gets vulvar cancer?

A: According to the American Cancer Society, about 4,850 women will be diagnosed with vulvar cancer in the United States in 2014. The majority of women with vulvar cancer are older than 50. More than half are older than 70 at the time they learn they have cancer.

Q: What are the risk factors for vulvar cancer?

A: Certain factors can make women more likely to get vulvar cancer. These are called risk factors. Just because a woman has one or more risk factors does not mean she will get vulvar cancer. In fact, a woman can have all of the risk factors and still not get the disease. Or, a woman can have no known risk factors and get vulvar cancer. Doctors are not exactly sure what causes vulvar cancer but these are some possible risk factors:

  • Age. Women older than 50 are more at risk for squamous cell carcinoma, which is the most common type of vulvar cancer.

  • HPV infection. Human papillomavirus (HPV) represents a group of viruses that can cause genital warts and have been linked to certain cancers. Women infected with certain types of HPV may be more at risk for vulvar cancer.

  • Smoking. Smoking increases your risk for vulvar cancer. If you smoke and have been infected with a high-risk strain of HPV, 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 sclerosus. Women with this condition have vulvar skin that is itchy and thin. These women 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.

  • HIV infection. Women with HIV are more at risk for vulvar cancer.

  • History of cervical cancer. Having cervical cancer is associated with a higher risk for vulvar cancer. The two types of cancer share some similar risk factors, such as having certain types of HPV infections and smoking. 

Q: What are the symptoms of vulvar cancer?

A: A woman 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 vulvar intraepithelial neoplasia (VIN). 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 wart-like 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 on the vulva 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 a woman's 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 and 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 very important that your particular findings be put into context by an expert. Gynecologic oncologists are subspecialists with advanced training in the diagnosis, treatment, and surveillance of female cancers including vulvar cancer. 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:

  • You should be treated by a gynecologic oncologist, a subspecialist with advanced training in the diagnosis and treatment of women diagnosed with a gynecologic cancer. 

  • 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 Foundation for Women's Cancer. The number is 312-578-1439 and they have a hotline at 800-444-4441. They can help callers find a gynecologic oncologist for a second opinion. Or use the Find a Gynecologic Oncologist tool at their website to search for a gynecologic oncologist by ZIP code. You can also find a gynecologic oncologist at the Society of Gynecologic Oncology

  • Call the National Cancer Institute's Cancer Information Service. The number is 800-4-CANCER (800-422-6237). They have information about treatment facilities, including cancer centers and other programs supported by the National Cancer Institute.

  • 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 to get 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 invasive 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

  • The best way to combine surgery, radiation therapy, and chemotherapy 

  • 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 FDA approves them. People who join trials also help researchers learn more about cancer and help future cancer patients.

 
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