Living as a Vulvar Cancer Survivor

For many women with vulvar cancer, treatment can remove or destroy the cancer. The end of treatment can be both stressful and exciting. You may be relieved to finish treatment, but it’s hard not to worry about cancer coming back. This is very common if you’ve had cancer.

For others, the cancer might never go away completely. Some people may get treatments to try and help keep the cancer in check or ease problems it's causing. Learning to live with cancer that does not go away can be difficult and very stressful.

Life after vulvar cancer means returning to some familiar things and making some new choices.

Follow-up care after vulvar cancer

When treatment ends, your doctors will still want to watch you closely. It's very important to go to all of your follow-up appointments. During these visits, your doctors will ask questions about any problems you may have and may do exams and lab tests or x-rays and scans to look for signs of cancer or treatment side effects.

The routine check-up for cancer recurrence is called surveillance. For vulvar cancer, the surveillance schedule typically involves a physical exam, bloodwork, and possibly imaging tests:

• Every 3 to 6 months for 2 years, then
• Every 6 to 12 months through year 5, then
• Every year

Be sure to let your doctor know about any new symptoms or problems, because they could be caused by the cancer coming back or by a new disease or second cancer. Additional testing to look for second cancers in women without symptoms is not recommended.

Almost any cancer treatment can have side effects. Some may last for a few weeks to months, but others can last the rest of your life. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.

Lymphedema is a common side effect when lymph nodes are removed as part of surgery for vulvar cancer. Your doctor will talk to you about lymphedema and what you can do to try to keep it from starting. Be sure to tell your doctor about any swelling, heaviness, pain, or skin changes you notice in your genitals or your legs.

Ask your doctor for a survivorship care plan

Talk with your doctor about developing a survivorship care plan for you. This plan might include: 

• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment
• A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care 

Keeping health insurance and copies of your medical records

Even after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.

Can I lower my risk of vulvar cancer progressing or coming back?

If you have (or have had) vulvar cancer, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of vulvar cancer or other cancers.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of vulvar cancer progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

If the cancer comes back

If the cancer does recur at some point, your treatment options will depend on where the cancer is located, what treatments you’ve had before, and your overall health. For general information on recurrence, you may want to see Understanding Recurrence.

Could I get a second cancer after treatment for vulvar cancer?

Women who’ve had vulvar cancer can still get other cancers. In fact, vulvar cancer survivors are at higher risk for getting some other types of cancer.

Some cancer survivors may develop a second, new, unrelated cancer later. No matter what type of cancer you've had, it's still possible to get another (new) cancer, even after surviving the first.

Survivors of vulvar cancer can get any type of second cancer, but they have an increased risk of:

• A second type of vulvar cancer (this is different from the first cancer coming back)
• Anal cancer
• Vaginal cancer
• Mouth and throat cancer
• Cancer of the voice box (larynx)
• Lung cancer
• Cancer of the brain and central nervous system

Many of these cancers are linked to smoking and/or infection with human papillomavirus (HPV), which are also risk factors for vulvar cancer,

 Getting emotional support after vulvar cancer

Some feelings of depression, anxiety, or worry are normal when cancer is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.