Learning you have any life-threatening illness can be devastating. But coping with a diagnosis of biliary tract cancer can be especially difficult. The more advanced the disease when it’s discovered, the less likely the chance of real recovery. As a result you may feel especially overwhelmed just when you need to make crucial decisions. Although there are no easy answers for people dealing with biliary tract cancer, some of the following suggestions may help:
§ Learn all you can about your illness. Learn everything you can about gallbladder and bile duct cancer — how the disease progresses, your prognosis and your treatment options, including both experimental and standard treatments and their side effects. Be sure you understand whether a particular approach is used to treat cancer or provide palliative care. Don’t be afraid to seek a second opinion and to explore treatments available through clinical trials. You will have many decisions to make in the weeks and months ahead. The more you know, the more active a role you can take in the decision-making process.
In addition to talking to your medical team, look for information in books and reputable sources on the Internet. The National Cancer Institute offers a toll-free information line called the Cancer Information Service. It provides access to trained counselors and accurate, up-to-date information on all aspects of living with cancer. You can reach the Cancer Information Service 24 hours a day at (800) 4-CANCER, or (800) 422-6237.
§ Maintain a strong support system. More and more studies show that strong relationships are crucial in dealing with life-threatening illnesses. Although friends and family can be your best allies, in some cases they may have trouble dealing with your illness. Or you may not have a large social network. If so, a counselor, medical social worker, religious counselor or even a formal support group can be helpful.
If you’re interested in learning more about support groups, talk to a doctor, nurse, social worker or psychologist. They may be able to put you in touch with a group in your area. Or check your local phone book, library or a cancer organization. The National Cancer Institute also can provide a list of support groups. After deciding to participate in a group, try it out a few times. If it doesn’t seem useful or comfortable, you don’t have to continue.
§ Come to terms with your illness. Coming to terms with your illness may be the hardest thing you’ve ever done. For some people, having a strong faith or a sense of something greater than themselves makes this process easier. Others seek counseling from someone who understands life-threatening illnesses, such as a medical social worker, psychologist or chaplain. Many people also take steps to ensure that their end-of-life wishes are known and respected.
In fact, the greatest fear of many people with a life-threatening illness is being subjected to treatments they don’t want or spending their last weeks or months in a hospital away from loved ones and familiar surroundings. But many more choices now exist for people with a terminal illness.
Hospice care, for example, provides a special course of treatment to terminally ill people. This allows family and friends — with the aid of nurses, social workers and trained volunteers — to care for a loved one themselves. It also provides emotional, social and spiritual support for people who are ill and those closest to them. Although most people under hospice care remain in their own homes, the program is available anywhere — including nursing homes and assisted-living centers. For those who stay in a hospital, palliative care specialists can provide comfort, compassionate care and dignity.
It’s also important to discuss end-of-life issues with your family and medical team. Part of this discussion will likely involve advance directives — a general term for oral and written instructions you give concerning your medical care should you become unable to speak for yourself.
One type of advance directive is known as a durable power of attorney (POA) for health care. In this case, you sign a legal document authorizing a person you respect and trust to make legally binding medical decisions for you if you’re unable to do so. A POA is often recommended because the appointed person can make decisions in situations not covered in a regular advance directive. Whatever you decide, it’s important to put your wishes in writing. Laws regarding advance directives and POAs vary from state to state, but a written document is more likely to be respected.