Living as a Bile Duct Cancer Survivor

For some people with bile duct cancer, treatment can remove or destroy the cancer. The end of treatment can be both stressful and exciting. You might experience a mixture of feelings, including joy, concern, relief, guilt, and fear.

For other people, bile duct cancer might never go away completely. Some people may get regular chemotherapy or other treatments to try and help keep the cancer in check. Learning to live with cancer that doesn't go away can be difficult and very stressful.

No matter what your situation is, there are steps you can take to live well, both physically and emotionally.

Follow-up care

If you’ve completed treatment for bile duct cancer, your doctors will still want to watch you closely. It’s very important to go to all your follow-up appointments.

Many doctors recommend follow-up appointments about every 6 months for at least the first couple of years after treatment ends. After that, your doctor will probably want to see you once a year. During these visits, your cancer care team will ask questions about any problems you may have. They will examine you and may check lab tests or x-rays and scans to look for signs of cancer or treatment side effects.

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. Some side effects may not develop until months or even years after treatment has ended. Talk to your cancer care team about any changes or problems you notice and about any questions or concerns you have.

Learn more: Late and Long-term Effects of Cancer.

One long-term side effect of treatment for bile duct cancer is the development of strictures after surgery to the biliary system. Strictures are noncancerous scars that form slowly. They may narrow the bile ducts, causing symptoms similar to those of the original bile duct cancer.

If your cancer does come back (recur), further treatment will depend on where the cancer is, what treatments you’ve had before, and your overall health.

For more on how recurrent bile duct cancer is treated, see Treatment Options Based on the Extent of Bile Duct Cancer. For more general information on recurrence, see Understanding Recurrence.

Ask your doctor for a survivorship care plan

Talk with your doctor about creating 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.

Learn more: Understanding Health Insurance

It is important to talk with your doctor about who will lead your follow-up care. Some survivors continue seeing their oncologist, while others transition back to their primary care doctor or another health care professional. This decision depends on the type and stage of your cancer, the treatments you received, side effects, health insurance rules, and your personal preferences.

At some point after 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 so you can give your new doctor the details of your diagnosis and treatment.

Learn more: Keeping Copies of Important Medical Records

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

If you have, or had, bile duct cancer, you probably want to know if there are things you can do to 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, limiting alcohol, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. Still, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of bile duct cancer or other cancers.

Learn more: Cancer Risk and Prevention

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of bile duct 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.

In the United States, dietary supplements are not regulated like medicines. 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 more information on how recurrent cancer is treated, see Treatment Options Based on the Extent of Bile Duct Cancer.

For more general information, you may also want to see Understanding Recurrence.

Getting financial support

Cancer treatment can be expensive. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. All of this can be a source of stress and anxiety.

For some people, the high cost of medical care stops them from completing cancer treatment. This can lead to larger health risks and higher costs in the future. If you have concerns about paying for your treatment expenses, it’s important to talk with a member of your cancer care team. They might be able to refer you to financial assistance, or to a patient navigator who can help.

Getting emotional support

Feeling depressed, anxious, or worried is normal when cancer is a part of your life. Some people say they appreciate life more after a cancer diagnosis, or that they’ve gained a greater acceptance of themselves. Other people become very anxious about their health and uncertain about coping with everyday life. Some people are affected more than others.

As time passes, you might still have feelings of fear and anxiety, but these emotions shouldn’t be a constant part of your daily life. If they persist, be sure to talk with your health care team.

Everyone can benefit from help and support, whether it’s from friends, family, religious groups, support groups, professional counselors, or others. Many survivors and people living with cancer find it helpful to join an in-person support group or an online community of survivors. This gives you the chance to talk with people who’ve had similar first-hand experiences.

Other options for support include talking with a member of your health care team, participating in individual counseling, or asking for assistance at the learning resource center where you received treatment.

Learn more: Life After Cancer.