The Uncertainty in Lung Cancer

I very recently spoke to our monthly Education for Lung Cancer group. After presenting a brief didactic that was also a handout, I engaged the group in an exercise. I had printed out an array of pictures from all aspects of life, but purposely left out pictures with words and pictures with religious symbols.

Included were a few medical items related to cancer treatment. The pictures were passed around and each person was asked to choose one picture (some chose several) that best represented the uncertainty they felt about any aspect of their lung cancer. The group was smaller than usual but that allowed more time for each person to share.

The first patient chose a picture of a chemo bag. Seems obvious, right? He explained that this is his fifth cancer, with lung being the newest. Chemo had worked for the other cancers, but he was uncertain that it would work for this cancer. His background was military and he had a very tender heart as he spoke about all that his wife has been through with him. He was also the encourager of others in the group.

The second patient chose several pictures, with the first one being that of a skeleton key. She explained that it represented people she loves and how they are the key to her connectedness and helping with her uncertainty. Her other picture was one of many doors. She felt uncertain as to which door to walk through -- standard chemo or clinical trial? Some doors had already closed and she was uncertain if other doors would open, allowing her to return to her normal life.

The patient’s husband chose an hourglass and a lightning storm. He shared that time is critical, and hence all is uncertain. That is why they stay close and spend as much time together as possible. The storm picture represented the brain metastasis recently discovered in his wife. “You never know where the lightening is going to strike.”

Another caregiver's husband, present with his wife, the patient, chose a picture of an MRI machine. His uncertainty was about what the results will show. “Fear of the unknown and anxiety can be the most difficult to deal with because there no control.” For the patient, the uncertainty decreases when the results are good. She chose a picture of a rainbow and of a violin because both nature and music calm her uncertainties.

Another caregiver who attended without his wife chose a picture of a man’s hand holding a women’s hand. He stated that he is so uncertain about the course of his wife’s suffering. She is in a lot of pain, he can’t seem to get anyone to help her, and he feels as though the oncologist has given up. (As she was not being seen our facility, we could only make suggestions regarding who he could talk to and what to ask for.) His uncertainty revolved around her suffering, what he could do about it, and how long it would last.

The last person to share was the husband of a patient who was just placed on hospice. When it was his turn to share, he already had tears streaming down his face. His uncertainty was about how long she would still be with him before she died. He had chosen a picture of a stained glass window. He shared that even though he wasn’t a strong believer, a lot of what they did together involved the church. The different colors represented all the colors she brought into his life and their life together. He would miss her deeply.

Nurses hear patients talk of uncertainties, whether waiting on a definitive diagnosis, staging, scan results, or treatment options. Patients have referred to anxiety when time for scans as "scanxiety." It is prevalent among the caregivers as well. Verbally acknowledging patient and caregiver feelings of uncertainty can do a lot to normalize their feelings.

Patients with lung cancer have many uncertainties. Merle Mishel, PhD, RN, FAAN has done much research in the area of uncertainty and its management in chronic and life-threatening illness. In addition, she has also created the Mishel Uncertainty In Illness Scale to help patients and caregivers address their concerns and fears.

What types of fears or concerns have your lung cancer patients verbalized to you?