I have a patient. Let’s call her, Jessica. I love Jessica. She is one of my favorite patients. When I see her on my schedule, I always smile. She is a straight-talking, blunt, loud, and opinionated woman with a big heart. Jessica has metastatic lung cancer. When she came to me two years ago, she was told she had months to live.
That day, we had a very real and honest conversation that lasted over an hour. We talked about her prognosis, best and worst case scenarios, a variety of treatment options and their side effects, and her fears. We spent some time talking about her goals and what she wanted to accomplish in whatever time she may have left. We talked about immunotherapy and the latest response rates we had seen with her type of cancer. She told me she was willing to try anything and with a determined spirit she emphatically stated, “Let’s give it a go!” She also shared with me that she had a bucket list. Her goal was to complete her entire list in whatever amount of time she had left on this planet. I told her, as long as she felt up to it, she should go for it.
For the next two years Jessica continued on immunotherapy and traveled with friends and family. Her husband surprised her with a prom that he had planned with all of their friends where she danced until midnight. She fractured her foot while chasing seagulls on the beach. She got bright pink highlights to accentuate her silver hair because, as she reminded me, “You only live once!” After six months we laughed as she told me she had rushed through finishing her bucket list and had completed it! And she admitted she was tired of traveling and chuckled when she shared she needed a break from vacations and would probably slow down for a little bit.
She comes to every treatment visit with an army of family members. There is always some combination of her daughters, who are just as opinionated and animated as she is, and her husband. Her daughters’ jovial conversations and cutting wit help distract her from focusing on the lifesaving medication infusing through her IV and lift the spirits of the other patients in the infusion suite.
Every three months when the day of her clinic visit with scans arrives, she sits down with the same fear she had at our first meeting. She comes to these visits with her security net of family, and her husband is always quiet, waiting to hear if their lives will again be thrown into chaos. Being the outspoken woman she is, she starts each visit with, “Am I dying?” So far, each visit I have been able to tell her, “You are not dying, and your cancer is stable.”
At every visit, we hug, some tears are shed, and then we spend the majority of our time discussing the next thing she wants to add to her bucket list now that she has completed it. But, with each new scan comes a new time of anxiety. And, with each clinic visit come flashbacks of our original meeting.
This is the world many cancer patients and their oncologists live in today. Patients with certain cancers who previously had a rapid decline from a fatal diagnosis are now able to live longer with ongoing metastatic disease. These patients are able to enjoy their lives, while at the same time they are forced to face their mortality at every oncology clinic visit. Patients like Jessica require us oncologists to modify the way we talk to patients with ongoing metastatic disease.
Jessica is only one example that stage 4, terminal malignancies — previously a death sentence — can now sometimes be managed as chronic illnesses for years. But the stigma of living with cancer isn’t the same as living with other chronic illnesses, such as heart disease or diabetes. Living with cancer can feel as if you are branded with a scarlet letter, but it does not have to be that way. Being a cancer patient and having a cancer diagnosis should not define who you are, nor should it prevent you from getting the most out of what you want in your life.
As oncologists, it is our job to help these patients understand that they can live, and even enjoy, their lives with a long-standing diagnosis of metastatic cancer. It can be difficult to change the way in which we approach these patients, especially when there is no crystal ball to tell us who will respond to treatment and who will not. We are armed with data and statistics from research studies and clinical trials, but there are no absolutes in medicine. Each patient’s case must be addressed and analyzed individually. These discussions must be tailored and personalized to the patient and their diagnosis. As newer treatment modalities and interventions are researched and implemented, the hope is that these conversations become more common.
With new drugs and interventions, we have been able to not only prolong the lives of many patients with certain malignancies, we have been able to improve their quality of life as well. As more advancements continue to become a part of our standard of care, the field is constantly changing and growing. With ongoing research and the paradigm shift that has been brought about by immunotherapy drugs and other innovative agents and interventions, we as oncologists will need to serve as guides as these patients navigate the previously uncharted waters of living a life with metastatic cancer.
My hope is that, in the future, more of these patients will be able to live life to the fullest. And, like Jessica, they will continue to add to their bucket lists.