This information explains vulvar cancer, including symptoms, diagnosis, and treatment.
The diagnosis of vulvar cancer brings many questions. We hope this booklet will review and add to what you learn from your doctors and nurses. Do not feel you have to read the whole booklet at once. It is meant for you to use over time. It may help to read some sections before you speak with your doctors and nurses so you will have a better idea of what to ask. Other sections will help you recall what the doctor has told you.
Vulvar cancer is rare. The vulva includes the inner and outer lips of the vagina, the clitoris, the opening of the vagina and its glands. They are in the area called the perineum. Vulvar cancer can be in any of these areas, but it most often affects the outer vaginal lips.
Vulvar cancer usually develops slowly over many years. It begins as abnormal cells, which can grow on the vulvar skin for a long time. These abnormal cells are precancerous. Terms for them are dysplasia and vulvar intraepithelial neoplasm or VIN. Treating these abnormal cells can help prevent vulvar cancer. Routine exams can find skin changes early. This makes them easier to treat.
Signs and Symptoms of Vulvar Cancer:
Vulvar cancer often does not cause early symptoms. When symptoms occur, they may be caused by other conditions, but they may also be due to cancer. No matter what their cause, do not ignore them. Use a mirror to examine your vulva. You can then describe what you have seen to your doctor. Call your doctor if you have any of the following:
- A lump, thickening or ulcer (sore) on the vulva
- A patch of skin that is differently textured or colored than the rest of the skin
- A change in the appearance of a mole
- Wart-like growths
- Itching or burning that does not go away with treatment
- Bleeding or discharge not related to menstruation (periods)
- Tenderness or pain
- Pain during intercourse or urination
- Unusual odor
There are no screening tests for vulvar cancer. All women should use a mirror to check the area once a month for skin changes. You or your doctor may be suspicious if you see or have changes in the area. The doctor will ask about your medical history. He or she will do a physical exam. If needed, you will have a biopsy of the area and other diagnostic tests.
A biopsy is the removal of a small piece of tissue from the vulva. This can be done in your doctor's office. The tissue is sent to the lab and examined under a microscope to check for signs of cancer. You will be notified of the results.
A computed tomography (CT) scan takes pictures of the inside of the body. The pictures are made by a computer linked to an x-ray machine. A dye may be injected into a vein or swallowed to make the organs or tissues show more clearly.
An MRI is a scan that uses magnetic fields. These let a special computer make detailed pictures of the inside of the body.
A PET scan can make images of the entire body. A small amount of a radioactive material is injected into a vein. This substance is absorbed mainly by tissues that use the most energy. Because cancer cells tend to use the most energy, they absorb more of the radioactive substance than normal cells. A scanner then detects this substance. Cancer often shows up as hot spots in the images.
Your doctor may also order a PET-CT. This combines the images from a PET scan and a CT scan. They are done at the same time on the same machine.
Routes of Cancer Spread
A metastasis is when cancer has spread beyond the area where it started. Cancer can spread from where it started in 3 ways:
- Into nearby tissue
- To the lymph system and then to other areas in the body
- To the blood vessels and then to other areas in the body
Staging is a way of describing where and how big the cancer is. The stage helps guide the treatment.
Stage 0 (Carcinoma in Situ): The cancer has not spread from where it started and is on the surface of the vulva only.
Stage 1: The cancer is only in the vulva or perineum. It has not spread to the lymph nodes or other parts of the body. This stage is divided into stage IA and stage IB.
Stage IA: The cancer is less than or equal to 2 centimeters (less than two-thirds of an inch) and has spread no more than 1 millimeter deep into vulvar tissue.
Stage 1B: The cancer is more than 2 centimeters deep and/or has spread more than 1 millimeter deep into vulvar tissue.
Stage II: The cancer has grown into tissues near the vulva and perineum. It can be any size. This tissue can be the lower part of the urethra, vagina, and/or anus. The cancer has not spread to the lymph nodes or other parts of the body.
Stage III: The cancer has spread to nearby lymph nodes.
Stage IV: Tumor invades other regional (2/3 upper urethra, 2/3 upper vagina) or distant structures
- Stage IVA: Tumor invades any of the following:
- Upper urethra and/or vaginal mucosa, bladder mucosa, rectal mucosa, or fixed to the pelvic bone
- Fixed (meaning they do not move when you feel them) or ulcerated inguina-femoral lymph nodes
- Stage IVB
- Cancer has spread to distant parts of the body.
Recurrent Vulvar Cancer
Recurrent vulvar cancer is cancer that has come back after it has been treated. The cancer can come back in the area of the vulva or in other parts of the body.
Treatment for vulvar cancer depends on:
- The size and location of the cancer
- Whether it has spread
- Your overall health
Your surgeon will discuss your treatment options with you.
Surgery is the main treatment. Often, the cancer involves several areas. This means a large amount of tissue needs to be removed. If the tumor itself is large (more than 2 cm) or has grown deeply into the vulva, the lymph nodes in the groin area may also be removed. The lymph nodes are tiny, bean shaped organs that help fight infection.
Types of Surgery
Laser surgery: Laser surgery is the use of a focused beam of light that burns the cancer off the skin. It is only used to treat precancerous conditions.
Wide excision: This is the removal of the tumor and some nearby tissue. The surgeon will want to remove a margin of healthy tissue to make sure all of the cancer is gone.
Vulvectomy: This is the removal of all or part of the vulva.
Lymph node dissection - Please ask your doctor to tell you the pros and cons of each type of lymph node dissection.
- A sentinel node dissection removes only the first nodes that drain the area near the cancer. You will be given a card with the details of how this is done if you will be having it.
- A complete lymph node dissection removes all the lymph nodes. It can be done on one or both sides of the perineum. It increases the risk of lymphedema in the leg on the side the nodes were removed. Lymphedema is swelling. If you will have a complete lymph node dissection, you will receive a booklet called Lymphedema of the Legs: Minimize Your Risk.
Some patients may need extensive surgery. In that case, your doctor will have you see a plastic surgeon to help plan your care.
What to Expect After Surgery
You will need time to heal and recover. Some women need longer to heal than others. Ask your doctor and nurse what you should expect. They can tell you more based on the surgery you had and how much tissue was removed.
Most patients' major discomfort is with positioning. For the first 3 to 4 weeks, you will be able to lie down or stand. You will not be able to sit. If you had extensive surgery or you had reconstruction, you may not be able to sit for up to 8 weeks. The surgical area will be sore for a few weeks. You will get pain medicine while you are in the hospital and a prescription before you go home. Some women go home with drains that need to be cared for. If this is the case you will be given instructions when you leave the hospital.
You will see your surgeon 7 to 10 days after surgery to check the surgery site and remove the stitches and drains.
Call the office sooner if you have:
- Increased pain
- Increased swelling
- Drainage or foul odor
- A fever of 101º F (38.3º C) or higher
- Difficulty urinating
Radiation is given if the cancer has spread to other areas in the body. This includes the lymph nodes and other organs. It can also be given before surgery to shrink the tumor.
The most common type of radiation is called external beam. It is given by a machine from outside of the body. Radiation can also be given internally with implants. In this case, it is brachytherapy. If you have radiation you will be given the booklet Radiation to the Pelvis for Gynecologic Cancer. It describes the preparation for radiation, the treatments, and the side effects.
If chemotherapy is planned for your treatment, you will get fact cards on your drugs. These have information on side effects and special points. They also tell you when to call your doctor.
Ask your doctor about clinical trials for vulvar cancer. These seek to improve outcomes. For more information, go to www.cancer.gov/clinicaltrials/education/what-is-a-clinical-trial.
Coping with vulvar cancer can be difficult. Some women want help in dealing with the emotional impact on them and their family. If you have questions or worries, talk with the members of your healthcare team. Let them know if you are feeling anxious or depressed. There are many counselors who can help you express, understand, and cope with your feelings.
Support groups are made up of other cancer patients. They support each other and can help you understand your feelings and experiences. Talk to your doctor or nurse about supports that are available to you.
You may have questions about sex. You can discuss them with your doctor, nurse or social worker. If you prefer, a counselor at the Female Sexual Health Program can address your concerns. Call for more information or an appointment. The number is (646) 888-5076.
A social worker can help you with sexual and other concerns. They are very good at providing emotional support. All professionals you see work together. The social worker can keep in touch with staff from many other departments who are part of your team. Social workers can help suggest resources for financial aid, transportation and home care. They can also refer you to the Case Management Department for further assistance.
You may also wish to call Integrative Medicine at (646)-888-0800.
- Visualization and other mind-body therapies
- Music therapy
- Nutritional counseling
- Classes in yoga, t'ai chi, and aerobics
After treatment ends, your doctor or nurse will give you a follow-up care plan. This tells you what exams and tests you should have in the future and how often you should have them. Following the plan can help to detect a returning or new cancer. Call in between check-ups if you have any symptoms. Ask your nurse to let you use a mirror so she can show you where to look. You should examine your perineal area monthly.
All cancer patients should
- Get to and remain at a healthy weight
- Stop smoking
- Eat a balanced diet
- Build strength and energy through exercise
Having cancer can cause many emotions. Recovering from cancer treatments can take time. Please take advantage of our staff's experience. They can help you at every step and can refer you to other professionals if needed. Let us know how you are feeling and what we can do to help.
Programs include Look Good…Feel Better, Hope Lodge, Reach to Recovery, Road to Recovery, and TLC. Dedicated to eliminating cancer as a major health problem, prevention, saving lives, and diminishing suffering, by means of research, education, advocacy, and service.
Provides free professional counseling, support groups, education and information, and referrals to cancer patients and their families to help them cope with the psychological and social consequences of cancer.
Provides a nationwide toll-free telephone service that answers questions and sends out booklets about cancer. Includes information about cancer treatments, screening, prevention and supportive care.
Provides information about specific types of cancer, updates on cancer treatments, and news about research advances.
Provides professionally led support groups nationwide and education, stress management, and social networking in a home-like community setting with a focus on enhancing health and well-being.
This foundation of the Society of Gynecologic Oncologists. Their mission is to support research, education and public awareness of gynecologic cancer prevention, early diagnosis and optimal treatment.