Coping with Advanced Cancer

by National Cancer Institute

About This Booklet

"What lies behind us and what lies before us are tiny matters compared to what lies within us." — Ralph Waldo Emerson

You've struggled with the diagnosis, treatment, and maybe the recurrence of cancer. Now doctors may have told you that you have advanced cancer. They may have said that your cancer is not responding to treatment and that long-term remission is no longer likely. Or they may have said they have run out of standard treatment options. However you learn the news, it can be devastating to you and your loved ones. Often it's hard to believe or accept at first.

"I have good days and bad days. But I try to let there be more good ones than bad, and focus on things in my life that I can control. I just do the best I can, enjoying family, friends, and the little things in life." — Louise

Having advanced cancer can bring anxiety and uncertainty to your life. But some people with advanced cancer live far longer than expected. And remember, you are still in control of your choices and actions. Having an advanced disease can be a time of personal growth. It can even be a time of second chances. Many people say they started to see life in a new way after learning that their cancer had progressed despite treatment. They realized the importance of making the most of each day.

This booklet stresses four main points:

• Learning more about ways you can help yourself may ease some of your concerns.
• Your treatment may change, but as always, you deserve to ask for and receive good medical attention from your health care team and support from your caregivers.
• It's important to talk about your worries, frustrations, and problems, and get support from others. In fact, it may be one of the best things you can do for yourself.
• As your medical care changes, you still have many choices. You can choose the way you wish to live each day.

Reading This Booklet

"There are lots of things I still want to do, but I know that I may not be able to do them the way I planned. But that doesn't stop me from trying to achieve them in a different way." — Millie

No two people are alike. Some chapters of this booklet may apply to you while others may not. Or some may be more useful later on. As you read this booklet, choose the parts that are right for you. Share it with your family members and loved ones. They may find it helpful to read it with you. Keep in mind that this booklet is for you, an adult with advanced cancer, and the people close to you. For other information for a parent or loved one of a child or young person with cancer.

Above all else, try to remember that you are still in charge of your life. It may be hard to do this with all that you are going through. You may have trouble coping with your feelings from time to time. Or you may be grieving that your life has gone a different way than you had hoped. It's natural to feel negative at times. You'll have ups and downs. We hope this booklet will help you. Our goal is to help you stay in control as much as you can, and make the rest of your life fulfilling and satisfying. You can still have hope and joy in your life, even as you cope with what lies ahead.

Making Choices About Care

"There's a part of me that wants to keep fighting and try a clinical trial; the other part wants to stop fighting. I'm just so tired of it all. Yet I can't help wondering if there are other options." — John

People have different goals for care when dealing with advanced cancer. And your goals for care may be changing. Perhaps you had been hoping for a remission. Yet now you need to think more about controlling the spread or growth of the cancer. Your decisions about treatment will be very personal. You will want to seek the help of your loved ones and health care providers. But only you can decide what to do. Your desire to avoid future regrets should be measured against the positives and negatives of treatment.

Questions you may want to ask:

• What's the best we can hope for by trying another treatment? What is the goal?
• Is this treatment plan meant to help side effects, slow the spread of cancer, or both?
• Is there a chance that a new treatment will be found while we try the old one?
• What's the most likely result of trying this treatment?
• What are the possible side effects and other downsides of the treatment? How likely are they?
• Are the possible rewards bigger than the possible drawbacks?

It is important to ask your health care team what to expect in the future. It's also important to be clear with them about how much information you want to receive from them.

Comfort Care

You have a right to comfort care both during and after treatment. This kind of care is often called palliative care. It includes treating or preventing cancer symptoms and the side effects caused by treatment. Comfort care can also mean getting help with emotional and spiritual problems during and after cancer treatment. Sometimes patients don't want to tell the doctor about their symptoms. They only want to focus on the cancer. Yet you can improve your quality of life with comfort care.

People once thought of palliative care as a way to comfort those dying of cancer. Doctors now offer this care to all cancer patients, beginning when the cancer is diagnosed. You should receive palliative care through treatment, survival, and advanced disease. Your oncologist may be able to help you. But a palliative care specialist may be the best person to treat some problems. Ask your doctor or nurse if there is a specialist you can go to.

Your Choices

"I know that just because I have stage-4 cancer doesn't mean I'm going to die tomorrow. My friend has lived a long time with her advanced cancer." — Li

You have a number of options for your care. These depend on the type of cancer you have and the goals you have for your care. Your health care team should tell you about any procedures and treatments available, as well as the benefits and risks of those treatments. Options include:

• Clinical trials
• Palliative radiation, chemotherapy, or surgery
• Hospice care
• Home care

Many patients choose more than one option. Ask all the questions you need to.

Try to base your decision on your own feelings about life and death, and the pros and cons of cancer treatment. If you choose not to receive any more active cancer treatment, it does not necessarily mean a quick decline and death. It also does not mean you will stop being given palliative care. Your health care team can offer information and advice on options. You also may want to talk about these options with family members and others who are close to you.

About the Author

www.nci.nih.gov
The National Cancer Institute's research programs are extensive and contain many innovative initiatives. I invite you to explore our Web site to find out more about the exciting work being conducted here at NCI and by NCI-supported scientists throughout the country.