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

What I Wish I’d Known Earlier about Cancer Survivorship


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This post is the first in a series about lessons I have learned over the years about the unique needs and responsibilities of those who have been diagnosed and treated for cancer. This series explores what it takes to find the right health care and make the most of it as part of our effort to live as well and as long as we can.

I have been treated for five different cancer diagnoses. Some would call me a cancer survivor.

I call me lucky.

The term "survivor" began to be applied to people who had been treated for cancer in the early '80s in an attempt to capture the unique effects of the diagnosis and treatment and the consequent psychological, social and health care needs. As more of us live long lives following treatment and as evidence is gathered about the recurrence and late effects of treatment, this word now denotes — in the minds of some — very specific phenomena and needs.

However, most people don't know that survivor is a technical term, rich in meaning. The public and the media use the word casually, often attaching (or inferring) attributions like "heroic" and "courageous" to describe anyone who has ever received a cancer diagnosis.

As a result, I and many of those who have been treated for cancer are a little tetchy about being called a cancer survivor.

But as a person who is lucky so far, I know that an accepted, shared term — cancer survivorship — is needed to expand what are now legitimate academic and clinical fields of inquiry and care for those who have been treated for cancer. Knowledge about the long-term effects of cancer and its treatments is advancing steadily. Systematic observations mount about the effects of cancer and its treatment in our bodies and minds as we age, acquire new diseases and undergo the stresses of, oh, life. As more of us live long after our treatment, the predictability of our needs for monitoring different organ systems is becoming firmer. We are at increased risk and we experience enduring symptoms and effects long after our treatment has ended.

These advances in knowledge about the impact of cancer diagnosis and treatment also signal that each of us should buck up and take on some additional health-related responsibilities over our lifetimes that most of us would prefer to ignore.

I certainly would. For the longest time, I believed that the Hodgkin's lymphoma that was diagnosed on my 20th birthday was a one-off, one-shot deal that had been cured by aggressive treatment, never to be heard from again. Two subsequent cancer blips discovered early through routine screening were treated surgically. In between these diagnoses in 1992 and 2001, I was robustly healthy. My two most recent diagnoses — gastric and lung cancers — are almost certainly related to the treatment I received when I was 20.

I used to believe that being a cancer survivor was something that one could attend to for the first couple of years following treatment and then swerve off into the conviction that life and health would proceed as though cancer had never happened.

When I finished my treatment for Hodgkin's lymphoma, the notion of cancer "survivorship" had yet to be coined. My doctor told me to go out and have a good life, come see him if I was ever back in town and reassured me that I would be the first to know if something was wrong. I wanted to believe him, and I did for a while. But eventually I realized I had to be a little more active on my own behalf. While for a long time I was pretty clumsy about how I cared for myself, I have learned a lot the hard way about what it takes to put together a survivorship plan that gives me the best chance to live well with the increasing burden of new cancers and the late effects of previous treatments. As part of my work, I have listened to scores of people who have been treated for cancer and compared notes on their various approaches to their experience with and following cancer treatment.

I plan to take the next few weeks to reflect on and write about what I wish I'd known earlier about getting good care following active cancer treatment, based on my own experience and what I have learned from others. There are excellent resources now available to help anyone diagnosed with cancer find their way toward a good survivorship plan. I will reference these when relevant, but you know, those websites and books and pamphlets are only tools. For those tools to be effective, each of us has to pick them up and use them for our own benefit.

If you have been diagnosed and treated for cancer, I invite you to join me in this summer project. Interested in writing a blog for this series? Get in touch. Have a response to mine or others’ insights? Please comment.

Whether you get itchy when someone calls you a “cancer survivor” or you enjoy the extra love that comes with the term, join me in sharing with others the hard-won lessons you have learned over the years about what it takes to find the right health care and make the most of it as part of your effort to live as well and as long as you can.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman

Tags for this article:
Cancer   Inside Healthcare   Patient Engagement   Participate in your Treatment   Jessie - Cancer Survivorship Series  

Comments on this post
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David Gewirtz says
July 10, 2013 at 11:29 PM

John Higgins-Biddle passed this link to me. I am a neighbor of John and Leslie who has lung cancer. I was diagnosed two years ago six months after my brothers death from lung cancer which took his life in nine short months. Not that this matters we were not smokers! I would welcome the opportunity to contribute to your blog. I have a specific subject in mind about lung cancer treatment that never ends. I have coined the concept the 56 day cycle. The term applies to patients that are on a clinical trial who must be scanned every 56 days. A psychological examination of this routine on the self and caregiver is important as well as the coping strategies survivors develope to carry this albatross. Please contact me at [email protected] if this resonates for you.

Marie Ennis O'Connor (@JBBC) says
July 22, 2013 at 10:42 AM

The terms cancer survivor and cancer survivorship have different meanings to different people, and how we refer to this growing population of people living with cancer has certainly stirred some debate.But what should we call this phase for those of us for whom active cancer treatment has ended? No one has yet come up with an all-encompassing term to cover it, apart from “survivor”. Until we do, the important thing is that we break the code of silence which sometimes surrounds the aftermath of cancer treatment. While the treatments for cancer targets the cancer quite specifically in the body, the experience does not leave the mind, the spirit or the emotions untouched. We need to heal both physically and psychogically - and it can be a lifetime's journey to do so. Cancer survivors often report that they are not prepared for the tsunami of emotions that hits them when treatment ends. They can be filled alternately with relief and elation at being given a second chance and with anxiety, fear and uncertainty in the months and years after treatment ends. I have met and talked to too many cancer survivors to know that the experience touches us at a very deep emotional and spiritual level. Some researchers into the area of survivorship have postulated the theory that surviving cancer fits the theoretical framework of postraumatic stress disorder. It is important that we share our stories, our advice and our experiences to By sharing your story in this way you can help to demystify the confusion, lessen the feelings of loneliness and isolation, and validate the experiences of others on the survivorship journey. I am delighted to see you taking on this project Jessie and I will be very interested to read the contributions.