If You Have Vulvar Cancer

What is vulvar cancer?

Cancer can start any place in the body. Vulvar cancer starts in the vulva. It starts when cells in the vulva grow out of control and crowd out normal cells. This makes it hard for the body to work the way it should.

Cancer cells can spread to other parts of the body. Cancer cells in the vulva can sometimes travel to the bladder and grow there. When cancer cells do this, it’s called metastasis. To doctors, the cancer cells in the new place look just like the ones from the vulva.

Cancer is always named for the place where it starts. So if vulvar cancer spreads to the bladder (or any other place), it’s still called vulvar cancer. It’s not called bladder cancer unless it starts from cells in the bladder.

The vulva
Ask your doctor to use this picture to show you where the cancer is.

The vulva

The vulva is the outside part of a woman’s genitals:

• On the outside are 2 folds of skin. The outer folds are called the labia majora. The inner folds are called the labia minora. The folds cover and protect the opening of the urethra (the tube that carries urine out of the body) and the vagina (the opening to the female organs inside the body).
• The inner folds form a hood of skin called the prepuce or the hood of the clitoris.
• Below the prepuce is the clitoris. This is a sensitive piece of tissue that swells with blood when stimulated.
• The fourchette is at the bottom of the inner folds where they meet.
• The perineum is the skin between the fourchette and the anus, which is where stool leaves the body.

Different kinds of vulvar cancer

There are a few kinds of vulvar cancer. The most common kind is squamous cell carcinoma. This kind starts in the cells that cover the surfaces of the vulva.

Your doctor can tell you more about the kind you have.

Questions to ask the doctor

• Why do you think I have cancer?
• Is there a chance I don’t have cancer?
• Would you please write down the kind of cancer you think I might have?
• What will happen next?

How does the doctor know I have vulvar cancer?

Some signs of vulvar cancer are skin changes in part of the vulva, a new bump, skin feeling thick or rough, itching, burning, an open sore, and new bleeding, spotting, or discharge from the vagina. The doctor will ask you questions about your health and do a physical and pelvic exam.

Tests that may be done

If signs are pointing to vulvar cancer, tests will be done. Here are some of the tests you may need:

Biopsy: In a biopsy, the doctor takes out a small piece of tissue to check it for cancer cells. A biopsy is the only way to tell for sure if you have cancer.

Pelvic exam under anesthesia: Drugs may be used to make you sleep while the doctor takes a close look at the vulva and looks for signs that the cancer has spread.

MRI scan: Uses radio waves and strong magnets instead of x-rays to make detailed pictures. This test may be used to see if the cancer has spread.

CT or CAT scan: This test uses x-rays to make detailed pictures of the inside of your body. This test may be done to look for cancer or to see if it has spread.

PET scan: PET scans use a kind of sugar that can be seen inside your body with a special camera. If there is cancer, this sugar shows up as “hot spots” where the cancer is found. This test looks at the whole body. It can help if the doctor thinks the cancer has spread but doesn’t know where.

Questions to ask the doctor

• What tests will I need?
• Who will do these tests?
• Where will they be done?
• Who can explain them to me?
• How and when will I get the results?
• Who will explain the results to me?
• What do I need to do next?

How serious is my cancer?

If you have vulvar cancer, the doctor will want to find out how far it has spread. This is called staging. Your doctor will want to find out the stage of your cancer to help decide what type of treatment is best for you.

The stage is based on how much the cancer has grown or spread through the vulva. It also tells if the cancer has spread to other parts of your body.

Your cancer can be stage 0, 1, 2, 3, or 4. Stage 0 is also called carcinoma in situ. The lower the number, the less the cancer has spread. A higher number, like stage 4, means a more serious cancer that has spread beyond the vulva. Be sure to ask the doctor about the cancer stage and what it means for you.

Questions to ask the doctor

• Do you know the stage of the cancer?
• If not, how and when will you find out the stage of the cancer?
• Would you explain to me what the stage means in my case?
• Based on the stage of the cancer, how long do you think I’ll live?
• What will happen next?

What kind of treatment will I need?

Treatment for vulvar cancer depends mainly on the stage of the cancer.

Surgery is the main treatment for most women. Sometimes other treatments are also used. The treatment plan that’s best for you will depend on:

• The type of vulvar cancer
• The stage of the cancer
• The chance that a type of treatment will cure the cancer or help in some way.
• Your age and overall health
• Your feelings about the treatment and the side effects that come with it.

Surgery for vulvar cancer

Most women with vulvar cancer have some type of surgery.

Laser surgery

This treatment uses a laser to burn off cancer cells. It may be used for stage 0 cancers.

Vulvectomy

For this surgery, part or all of the vulva is removed.

• For a simple vulvectomy the vulva is removed.
• A radical vulvectomy removes part or all of the vulva and some of the deep tissue under it.

Sometimes a lot of skin is removed. Then skin must be taken from another part of the body to cover the wound. This is called a skin graft.

If the cancer has spread a lot, more surgery may be needed to take out nearby lymph nodes (small clumps of immune cells) and other tissues to see if they contain cancer cells.

Ask your doctor what type of surgery you will need and what your body will look like after surgery.

Side effects of surgery

Any type of surgery can have risks and side effects. Ask the doctor what you can expect. If you have problems, let your doctors know. Doctors who treat women with vulvar cancer should be able to help you with any problems that come up.

Radiation treatments

Radiation uses high-energy rays (like x-rays) to kill cancer cells. This treatment may be given along with chemo to help shrink a tumor so it’s easier to take it out with surgery. It may also be used alone to treat nearby lymph nodes.

Radiation is aimed at the vulva or lymph nodes from a machine outside the body. This is called external beam radiation.

Side effects of radiation treatments

If your doctor suggests radiation treatment, talk about what side effects might happen. The most common side effects of radiation are:

• Skin changes where the radiation is given
• Feeling very tired
• Upset stomach or loose stools

Most side effects get better after treatment ends. Some might last longer. Talk to your cancer care team about what you can expect.

Chemo

Chemo is short for chemotherapy, the use of drugs to fight cancer. The drugs are often given through a needle into a vein. These drugs go into the blood and spread through the body.

Chemo may be given along with radiation to help shrink a tumor so it’s easier to take it out with surgery. It may also be used alone to treat advanced cancer.

Chemo is given in cycles or rounds. Each round of treatment is followed by a break. Most of the time, 2 or more chemo drugs are given. Treatment often lasts for many months.

Side effects of chemo

Chemo can make you feel very tired, sick to your stomach, and cause your hair to fall out. But these problems usually go away after treatment ends.

There are ways to treat most chemo side effects. If you have side effects, talk to your cancer care team so they can help.

Clinical trials

Clinical trials are research studies that test new drugs or other treatments in people. They compare standard treatments with others that may be better.

If you would like to learn more about clinical trials that might be right for you, start by asking your doctor if your clinic or hospital conducts clinical trials.

Clinical trials are one way to get the newest cancer treatment. They are the best way for doctors to find better ways to treat cancer. If your doctor can find one that’s studying the kind of cancer you have, it’s up to you whether to take part. And if you do sign up for a clinical trial, you can always stop at any time.  See Clinical Trials to learn more.

What about other treatments I hear about?

When you have cancer you might hear about other ways to treat the cancer or treat your symptoms. These may not always be standard medical treatments. These treatments may be vitamins, herbs, diets, and other things. You may wonder about these treatments.

Some of these are known to help, but many have not been tested. Some have been shown not to help. A few have even been found to be harmful. Talk to your doctor about anything you’re thinking about using, whether it’s a vitamin, a diet, or anything else.

Questions to ask the doctor

• What treatment do you think is best for me?
• What’s the goal of this treatment? Do you think it could cure the cancer?
• Will treatment include surgery? If so, who will do the surgery?
• What will the surgery be like?
• Will I need other types of treatment, too?
• What will these treatments be like?
• What’s the goal of these treatments?
• What side effects could I have from these treatments?
• What can I do about side effects that I might have?
• Is there a clinical trial that might be right for me?
• Will I be able to have children after treatment?
• Will I be able to enjoy sex after treatment?
• What about vitamins or diets that friends tell me about? How will I know if they are safe?
• How soon do I need to start treatment?
• What should I do to be ready for treatment?
• Is there anything I can do to help the treatment work better?
• What’s the next step?

What will happen after treatment?

You’ll be glad when treatment is over. But it’s hard not to worry about cancer coming back. Even when cancer never comes back, people still worry about it. For years after treatment ends, you will see your cancer doctor. At first, your visits may be every few months. Then, the longer you’re cancer-free, the less often the visits are needed.

Be sure to go to all of these follow-up visits. Your doctors will ask about symptoms, do physical exams, and may do tests to see if the cancer has come back. You will also need to keep getting screening tests.

Having cancer and dealing with treatment can be hard, but it can also be a time to look at your life in new ways. You might be thinking about how to improve your health. Call us at 1-800-227-2345 or talk to your doctor to find out what you can do to feel better.

You can’t change the fact that you have cancer. What you can change is how you live the rest of your life – making healthy choices and feeling as good as you can.