Through blogs and comments, patients and experts explore what it takes to find good health care and make the most of it.

Rethinking Survivorship in the Context of Illness


article image
Follow us on Facebook

This post was contributed in response to Jessie Gruman's What I Wish I'd Known Earlier about Cancer Survivorship series about the unique needs and responsibilities of people who have been diagnosed and treated for cancer.

When I was practicing oncology, I never thought much about the concept of survivorship. I was busy running a research lab and rounding on my hospital's inpatient oncology unit. In my practice, I cared for patients with chronic forms of leukemia and lymphoma. As a resident and fellow, I'd seen patients with pretty much every kind of tumor you might name.

Until I was diagnosed with cancer myself, I didn't really appreciate how blurry the line is between being a survivor and having the disease. The distinction is not binary. These days, a cancer patient with a seemingly incurable disease might, if they're lucky, hitch a ride on a new medication for a few months, until another option comes along. You never know which "arm" of a smooth or jolty curve you're riding, or when the journey stops.

When I was in active practice, many patients (and family members) would ask me how long I expected them to live. As much as I tried to answer their questions, I didn't like giving statistics, in part because I knew that my estimate would, as often as not, prove wrong. The more experience I gained as an oncologist, the more I observed that some patients would surprise us – by living longer, or shorter, than we would have predicted. Besides, I felt the published numbers were too difficult to comprehend. Not so much for me, as a doctor, but for patients to read or hear or see their statistics represented in the likes of Kaplan-Meier curves.

The statistics in the medical literature were too black and white, disheartening, and, necessarily, outdated. If a patient insisted on hearing numbers, I'd give them quietly and follow them with a statement of my firmly-held belief that published statistics were always off because they were old, typically based on treatments used 5, 10 or 15 years prior, long enough for the studies to have been completed, analyzed and reported. For many cancer types, there was progress ahead – new options in the pipeline. Hopefully there'd be another drug to try.

In retrospect, I realize I was being paternalistic by not immediately and directly, without hesitation, providing my patients with published information on the cancer type that best resembled theirs. But I was truthful, always, I'm pretty sure. There are ways of acknowledging reality, however bleak, while offering hope.

Still, I can't recall a patient ever asking, "Will I survive?" The questions were about time, about pain, about hair loss, about return to work, about toxicity, about hugging kids or petting the dog.

Most cancer patients at the hospital were actively receiving treatment. For many, the goal was a cure. We were trying to help them arrive at a state of survivorship – a place from which where they might look back on their illness as a completed process and relax. Others had what we the doctors understood as incurable disease. Back then, the difference was usually clear; there were checklists on exams for "curable" and "incurable" tumors, and we were expected to know the difference. For people with incurable conditions, my recommendations were usually for palliation by drugs, radiation, transfusions and other interventions aimed to make them feel better, to be more comfortable and, possibly, enjoy more weeks or months of life. For a few patients with seemingly incurable cancer, if they wanted to chance it and were capable of providing informed consent, I might offer an experimental trial.

We were instructed, and I taught my students, not to use the "c-word." C was for cure. Remission was the way to go, whether that meant short-term or long.

My cancer was a big bump in the road of life-long illness. Survivorship, in the conventional sense, seems an antiquated, abstract goal. I realize now that cancer treatment, like that for most any medical condition, is – if you choose it – a way to get to a place where you're more comfortable, productive, and able to enjoy most days and what company you keep as best you can.

More Blog Posts by Elaine Schattner

author bio

Elaine Schattner, M.D., is a trained oncol­ogist, hema­tol­ogist, edu­cator and jour­nalist who writes about med­icine. Her views on health care are informed by her expe­ri­ences as a patient with sco­l­iosis since childhood and other con­di­tions including breast cancer. She is a Clinical Asso­ciate Pro­fessor of Med­icine at Weill Cornell Medical College, where she teaches part-time. She holds an active New York State medical license and is board-certified in the Internal Med­icine sub­spe­cialties of Hema­tology (blood dis­eases) and Oncology (cancer medicine). She writes regularly on her blog, Medical Lessons. You can follower her on Twitter @ElaineSchattner.

Tags for this article:
Cancer   Inside Healthcare   Make Good Treatment Decisions   Health Care Quality  

Comments on this post
Please note: CFAH reserves the right to moderate all comments posted to the Prepared Patient® Blog. Any inappropriate postings will be removed.

No comments have been entered yet.