There’s no set playbook for how to handle a terminal cancer diagnosis.
“The sky’s the limit,” said Dr. Erin Costanzo, a psychologist with the UW Carbone Cancer Center Health Psychology Clinic. “Pretty much any feeling is normal.”
There’s pain. Fear. Anger. Sadness. Or, she said, for many people the news might not sink in right away. It’s an overwhelming situation, and it’s normal to feel numb to it right away.
“Often it takes some time for that information to settle in, for people to connect to it,” she said. “I’ve certainly talked with many patients over the years who are very capable of understanding what their doctors are saying, but that information about a difficult prognosis just doesn’t set in until later.”
These reactions can be complicated and will differ from person to person. It can be especially tricky if loved ones have different reactions and emotions about the diagnosis. Costanzo said while a patient may be in shock and not have any emotional response immediately, a spouse may have a strong, immediate reaction.
Costanzo said it’s OK to be in different places about the news, and she suggested having open conversations about how each other feels without trying to “fix” or change the other’s thinking.
“The most important thing is to be a good listener and ask curious questions,” she said. “Focus on getting concerns and feelings and thoughts out there without trying to quickly move into, ‘What should we do about this?’ mode.”
Costanzo also said it can be easy for a loved one or caregiver to push their own feelings aside. The opposite also can be true.
“Often patients will say, ‘This is awful, but I can be OK with this. I’m really worried about my spouse, or my child, or somebody else very close,’” she said. “Everybody needs to remember to make space for their own emotions.”
Costanzo recommends “The Complete Bedside Companion: A No-Nonsense Guide to Caring for the Seriously Ill” as a helpful book for loved ones who are serving as caregivers.
The Carbone Cancer Center Health Psychology Clinic provides consultations and brief treatment to patients who would like help coping with cancer, treatment, and prognosis. In addition to helping address difficult emotions and thoughts, Costanzo said staff can also help with strategies for patients having trouble sleeping, who are fatigued or who have treatment-related pain.
Carbone’s Palliative Care Team is a useful resource for patients, offering medical care focused on quality of life and pain management as well as spiritual resources and social worker support. Costanzo also highly recommends that patients who may have weeks or months left to live reach out to their local hospice provider. Those agencies not only care for patients but also offer helpful support services for families.
Figuring out how to tell others about a terminal diagnosis can be difficult. Costanzo said patients should take time to focus on themselves and ask questions of their physician. That creates a wiser space to decide on how they would like to share information and with whom they would like to share it.
“One of the things that patients worry about is that people may treat them differently when they hear they have a poor prognosis,” she said. “I usually advocate for letting people close to you in your inner circle know, but beyond that, it’s really up to the patient how much they want to share and with whom.”
Discussing the topic with children can be daunting. Costanzo recommends the book, “How to Help Children Through a Parent’s Serous Illness: Supportive, Practical Advice from a Leading Child Life Specialist,” as a resource with age-appropriate advice.
Costanzo said some patients find comfort in creating legacy gifts for children, such as a stuffed animal with a recording of a loved one’s voice, or video and audio recordings for special occasions in the future.
Once they have had some time to process news about a difficult prognosis, Costanzo said it is common to think about what to do with their time left. Should they create a “bucket list” of big events to achieve? For some, she said, making lists like that can be helpful and give fulfillment.
But it is also common to continue in normal routines and daily activities for as long as possible, including continuing to work. She advised that patients pursue whatever activities best reflect their values and priorities — there is no obligation to do things a certain way.
“For many people, it may be a hybrid or compromise,” she said. “Maybe you do something you’ve been putting off, like a trip or a family reunion, and continue with the daily activities and routines that can also provide a sense of comfort and meaning.
“There’s no right or wrong answer.”
Costanzo added that it is normal for special moments to bring complex emotions: Joy at spending time with friends and loved ones, but also grief over an event that could be “the last” one for them.
“While it is normal and understandable to think ‘I don’t want to have hard, difficult emotions like fear and sadness,’ if you don’t make room for them, you may also block out other emotional experiences like joy, connectedness, and gratitude,” she said. “It’s very normal have a wide range of these emotions that change or shift or even occur all at once.”