Coping with Advanced Cancer Long Term
More and more people with advanced or metastatic cancer are living longer, going on and off treatment for many years.
With new cancer treatments, more and more people with advanced or metastatic cancer are living longer, sometimes for many years. But such long-term cancer survivors will usually need cancer treatment for the rest of their life—or go on and off treatment for many years—to keep their cancer at bay.
Issues that affect living with advanced cancer
Living with advanced cancer long term comes with ups and downs. People may struggle with a number of issues that can affect their quality of life. Common challenges may include:
- coping with uncertainties of when treatments and medicines might need to change
- worrying about your health
- dealing with ongoing or changing side effects
- scheduling regular tests and other medical appointments
- having money worries
- keeping a balance with daily life
- changing your plans, goals, and priorities from time to time
The good news is that many people who live with advanced cancer long term continue to find joy and fulfillment in life. They’re able to work, spend time with family and friends, and take part in activities that they enjoy.
Physical side effects for long-term cancer survivors
It may be hard to adjust to side effects caused by your ongoing treatment. For example, fatigue, memory problems, and sleep problems are common among cancer survivors who are on treatment long term. Remember:
- Let your health care team know if you have questions or concerns about any side effects you’re having.
- Recognize when you need to ask for help. This is crucial for ensuring you receive the best possible care.
- In some cases, you may need to talk with your doctor about finding the optimal treatment dose that will help keep your cancer stable while minimizing the side effects.
The physical toll of cancer may affect your relationships with others. If you’re comfortable, it may help you to reach out to your friends and loved ones about the side effects you’re having. They need to know what you’re going through so they can offer support, understanding, and lend a hand when you need it.
For a list of side effects and how to cope with them, see Side Effects of Cancer Treatment.
Coping with your feelings over time
Having long-term advanced cancer can affect your emotions in many ways. Some days you might feel okay, while others can seem hard to get through. The uncertainty of whether you will need to change treatment or if it will stop working can be stressful. And the fear of cancer recurrence or late effects may always be in the back of your mind.
Feeling anxiety, depression, or other problems commonly affect cancer survivors. It’s also normal to feel a sense of loss and loneliness. These feelings can change from day to day or week to week. For common examples and ways to cope, see Emotions and Cancer.
Remember that you’re not alone. Prioritize the activities and relationships that bring joy and meaning to your life. Consider joining a support group where you can talk to others in similar situations. Or seek out spiritual support or meet with a counselor. Try to keep the lines of communication open with your health care team and let them know when you need help. They can assist you with finding the help you need. See our Cancer Support Groups page for more information.
Financial worries for long-term cancer survivors
It’s common for cancer survivors to have concerns about their bills and expenses. Financial concerns can be magnified for those who are in long-term treatment for advanced cancer. The term “financial toxicity” describes problems a patient has related to the cost of medical care.
Not only do insurance copays and deductibles add up, but out-of-pocket costs do, too. These may include transportation, meals, parking fees, and other daily expenses. Know that there are many resources that can help you.
See Managing Cancer Costs and Medical Information for tips on understanding costs and health insurance. For more information about financial toxicity, visit the Financial Toxicity and Cancer Treatment Page.
Moving forward with more resources
Living and coping with advanced cancer long term is a very personal experience, and there is no right or wrong way to navigate it. The journey will be filled with ups and downs, as well as new experiences and relationships that can bring you joy.
Know that scientists are continuing to make new discoveries to help people with cancer live longer and with a better quality of life. (See Advances in Cancer Research and our Cancer Currents blog for examples.)
To read stories and watch videos of cancer survivors sharing their experiences, see NCI’s stories of survivors and caregivers.
For help with a variety of cancer-related questions, patients, caregivers, loved ones, and the general public can call NCI’s Cancer Information Service at 1-800-4 CANCER (1-800-422-6237) or go to their website to chat with a cancer information specialist online.