What to Do When You Are Diagnosed With Terminal Cancer

senior woman wearing scarf drinking coffee
Thomas Barwick/Stone/Getty Images

There’s no “right” approach to dealing with terminal cancer—cancer that can't be cured—and no two people handle it in exactly the same way. Still, the following guide may help you cope.

After Hearing the Diagnosis

Upon hearing the diagnosis, you may feel numb, as if it were all happening to someone else. Feelings of sadness, fear, loss, and anger are also common.

“Some patients never accept a terminal diagnosis and die seeking treatment.

Others get the diagnosis, say, ‘OK,’ and start putting their affairs in order," says Greta Greer, Director of Survivor Programs for the American Cancer Society.

It will probably take more than one conversation with your doctor to address your concerns and get the information that you need. Second medical opinions are also important. Valuable online resources include the American Cancer Society’s Nearing the End of Life.

People also differ in how they share their diagnosis with others. Some discuss it readily and write blogs and social media posts for the world to see, while others disclose little and prefer to keep the information mostly private. Those who have small children may want to keep things as normal as possible for as long as they can.

Treatment Options

Although your cancer is incurable, you’ll still have treatment options. William Breitbart, MD, chief of psychiatry at New York’s Memorial Sloan-Kettering Cancer Center, estimates that at least 35 percent of cancer patients “would benefit from an intervention with a social worker, psychologist, or psychiatrist.” Terminally ill patients, in particular, can suffer from depression and/or anxiety, both of which are treatable with therapy, medications, or both.

You may benefit from life-extending (though not curative) radiation or chemotherapy. Palliative care—which is intended to relieve symptoms such as pain—may improve your quality of life. Be assertive in asking about your options, including alternative therapies like acupuncture. Many experts say pain is under-treated in the U.S. because of concerns about drug addictions.

Some people take part in clinical trials that investigate experimental treatments. In a clinical trial, you may receive the very latest of therapies—and you'll know that you're contributing to future advances in cancer care. The American Cancer Society offers extensive information about trials, and the National Cancer Institute's website lets you search among thousands of studies that are currently accepting participants.

The Dying Process

Patients’ concerns frequently include getting effective support from their healthcare team, retaining their dignity, and not being in pain. Many patients want some idea of what to expect at the end.

Death from cancer is characterized by a gradual weakening. (Don’t assume that you’ll enjoy essentially stable health before a final, swift decline.) The dying person spends more and more time in bed—and less time awake—falling into a deep, trance-like state before dying.

Finding Support

Giving up hope for a cure doesn’t mean giving up. These are some effective coping strategies:

  • Taking one day at a time and focusing on the present
  • Realizing that there will be good days and bad days
  • Trying to maintain a sense of normalcy and routine
  • Avoiding anticipating bad things that may (or may not ever) happen
  • Doing things that you enjoy; don’t just focus on dying

Emotional support is important but may not come from family: “After a terminal diagnosis,” Greer says, “some families draw closer together, but some become more strained and distant.” Many hospitals offer counseling services for couples and families.

Seeking help from friends or relatives can be easier if you start by asking for help with practical tasks, such as childcare, meals, or rides. The American Cancer Society’s Cancer Resource Network also provides support.

Many people with terminal cancer find support from other cancer patients. Hospitals often sponsor cancer support groups.

Web-based communities, such as “Dying With Cancer,” which is part of CancerChat.org.uk, are also available.

Additional Considerations

These are some questions that you may want to ask yourself as you cope with your diagnosis of terminal cancer. 

Healthcare Issues

  • Do you want hospice care?
  • Are there certain things (feeding tubes, cardiopulmonary resuscitation) that you don’t want?
  • What about a healthcare proxy, advance directive, or do-not-resuscitate order to guide your care when you cannot?

Legal and Financial Matters

  • Are your financial affairs in order?
  • Does someone know where to find important papers?
  • Do you have a will? Is it up to date?
  • Do you have life insurance? Is the beneficiary information current?

Final Preparations

  • Are there keepsakes or heirlooms to give to loved ones?
  • What about preparing letters or videos for them?
  • Do you want to die somewhere other than the hospital? What will that entail?
  • Do you want a minister, priest, rabbi, or spiritual advisor present at the end?
  • Do you want your body buried or cremated? Do you have a burial plot? Would you like your ashes scattered in some special place?
  • What are your preferences for a memorial service? Have you shared your wishes?

Setting Priorities

Above all, you’ll need to decide what to do in the time remaining. Are there issues that you’d like to resolve? Do you want to resume your old life for as long as possible? Complete a major project? Travel? If you have small children or grandchildren, time with them may be your top priority.

Some people become advocates. Before his death from pancreatic cancer, Carnegie Mellon University professor Randy Pausch delivered a “last lecture” that became a best-selling book and popular YouTube video. He dedicated himself to doing everything possible to increase awareness of pancreatic cancer.

Whatever you choose, you’ll need to get a ballpark sense of how much time you’ve got—years, months, days? Your doctor may say such predictions are little more than guesswork, but a rough time frame is vital.

Finally, as Dr. Breitbart observes, terminal illness poses existential challenges, such as accepting the life that you’ve lived, giving that life coherent meaning, and attaining a sense of closure. Consider asking yourself simply, “Am I at peace?”

Sources:

AmericanCancer Society. End of Life Care. 

Centers for Disease Control and Prevention. Advance Care Planning: Ensuring Your Wishes Are Known and Honored If You Are Unable to Speak for Yourself. 

Pausch, Randy, Assoc. Prof. (August 2008).Carnegie Mellon University: Fighting Pancreatic Cancer.  Carnegie Mellon

Continue Reading