Cancer Survivorship – An Introduction

Last Updated: July 3, 2018

The term “cancer survivor” is used for anybody who has been diagnosed with cancer.

Medical oncologist Dr. Lidia Schapira along with patient advocate and survivor Terry Kungel talk about what cancer survivorship means. This video includes information about survivorship care, phases of survivorship, tools that can make your follow-up care plan easier, and where to get more information.

More Information

Survivorship Resources

Long Term Side Effects of Cancer Treatment

ASCO Answers: Guide to Survivorship (PDF)

ASCO Answers: Sobrevivencia al Cáncer (PDF)

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Cancer.Net: Doctor-Approved Patient Information from ASCO®

Survivorship — An Introduction

Who is a “Cancer Survivor”?

Lidia Schapira, MD; Medical Oncologist; Member, American Society of Clinical Oncology: We use the term “cancer survivor” for anybody who’s been diagnosed with cancer.  From the moment that somebody hears they have cancer, they are a cancer survivor.  For the purposes of planning for care and for research, we often use the term “cancer survivor” to refer to those who have just completed their treatment for cancer.  And we think of survivors as those who are living through and beyond cancer.  So, it’s a pretty inclusive definition. 

Terry Kungel, Patient Advocate; Member, American Society of Clinical Oncology: Cancer survivorship means something more than surviving.  I hope it means thriving and that says that you have to bring a lot of energy to dealing with this adverse event and the folks that are resilient, optimistic, and take some ownership, can actually thrive not just survive.

What is “Survivorship Care”?

Dr. Schapira: Survivorship care really refers to the medical care of somebody who has completed their treatment for cancer, or perhaps for somebody who is still undergoing maintenance treatment for cancer.  So, it refers to the coordination of care.  It refers to having a mechanism for transmitting the necessary information about possible complications of cancer treatment, the need for surveillance, the need for perhaps the provisions of some special supportive or psychosocial services.  So, survivorship care is a term that basically includes many different aspects of care, that patients who have completed or are still receiving maintenance cancer treatment will need to move on, to get back into their normal lives.

Phases of Survivorship Care

Dr. Schapira: It’s interesting to think about phases of survivorship and perhaps the acute phase is the time when you are finishing your cancer treatment, or perhaps even receiving cancer treatment, and then you must make a transition, you know, out of that very carefully coordinated and almost scripted time where you have a lot of access to cancer experts and you have a chance of asking a lot of questions and being monitored to a time when perhaps the contact is less frequent.

Terry Kungel: When you’ve finished the primary treatment, you’ve gone through an enormous amount of effort to just get to the point where you make the treatment, but then after the surgery is over, after the radiation is over, you get into this zone where it’s very quiet, and you actually, even though it’s over, I would say, in my case, you’re a little bit more anxious, and you’re a little bit unsettled, because you’re now starting to look at, okay, what’s the rest of the future going to look like.

Dr. Schapira: The initial period is a time when we’re very busy dealing with side effect or toxicities of treatment, making sure the burden of symptom is diminished and actually cared for, and there’s a lot of things that need to be done and coordinated.  And then, there’s a period of extended survivorship care where perhaps there’s less contact.  There are fewer symptoms to handle, but still some.  There are fewer tests that need to be done.  This may vary of course.  A patient who’s had a very early stage cancer may have a very different survivorship period than somebody who had a bone marrow transplant.

So, I think it depends a little bit on the diagnosis and it depends a little bit also on how somebody went through that acute period of cancer.  For some patients, receiving cancer treatment really disrupts their life.  It may also impact on family caregivers.  There may be relationship problems.  There may be a problem or anxiety about going back to work.  There may be some confusion about which doctor to go to, or who to call if there’s a symptom.

And then of course there is something that’s very important to cancer survivors, which is the burden of late effects or persistent side effects that just don’t seem to go away with the last treatment.  And what I mean is, for instance, things like the fear of recurrence, fatigue, difficulty sleeping, perhaps some lasting pain.  So, all of these things make up the kinds of problems that we manage through tailored and more precise survivor care.

The Survivorship Care Plan and Treatment Summary

Dr. Schapira: There’s been a lot of interest over the last 12 years or so in generating the treatment plans and survivor care plans.  Not every cancer patient gets one and perhaps, some of them don’t even need one.  But, the survivor care plan or the treatment summary are helpful documents to most patients because they help minimize some of the problems in care coordination. 

The purpose of having these very concise treatment summaries is that in 1 or 2 pages there should be a very clear summary of what treatment somebody received and what needs to be done to keep them healthy and safe for the future.  It’s important to transfer the information and in some cases, it’s important to give detail and in some cases, it may not be so necessary.  But, let’s just take 1 example.

Say a young person was treated successfully for cancer and all of a sudden now moves because he or she finds a new job and has a new primary care doctor, but they may have received a drug that may permanently impact on their heart health.  So, this new doctor needs to know that.  So, in this case, for instance, it would be important to know what drugs this patient received, whether they had radiation perhaps to the area that involves the heart or is around the heart.  So, this is what we mean by having these summaries and being careful to transmit important health information, that is to keep our patients safe even years after they’ve completed successful treatment for cancer.

So, I think that it’s important to realize that patients need to be guided by their cancer clinicians to come up with a survivor plan for care that helps them understand very clearly how often they need to return, what kind of tests they need to have, and when and what they really should be discussing with their primary care clinicians.

Terry Kungel: A survivorship care plan entails essentially putting together a roadmap, and looking at what you do at what you do at what point in time for not only the patient, but for the partner and the caregiver and the family, and that’s going to be different for each individual.  I mean there isn’t, this is not a case where we’ve got a template that works for everybody.  You really have to get into looking at what the patient preferences are, and figuring out based on those preferences what they need and what they want.

Dr. Schapira: There are still quite a few challenges that are left, and there’s a lot of research going on in trying to think about creative models of care so we can bring in somebody who has expertise in primary care and general medicine and work alongside a cancer clinician and perhaps a mental health worker or social worker because the needs of cancer survivors are so different and span really so many broad areas.  They have to do with finances, insurance, going back to work, resolution of physical symptoms and knowing how to monitor health; you know, heart health, lung health, gynecological health because the body and the mind probably have changed quite a bit as a result of that cancer therapy.

Where to Get More Information

Dr. Schapira: If you’re looking for more information on cancer survivorship, I would recommend that you look at the resources on Cancer.Net, ASCO’s website for the public.  We have wonderful information in printed form, through videos and blogs, bringing in the voices of experts and patients.  And I think we’ve covered almost every aspect of survivorship.  So, I hope that you find it helpful.

[Closing and Credits]

Cancer.Net: Doctor-Approved Patient Information from ASCO®

ASCO's patient education programs are supported by Conquer Cancer® The ASCO Foundation

Special Thanks:

  • Dr. Mary Wilkinson, Dr. Raymund Cuevo, and the staff at Medical Oncology & Hematology Associates of Northern Virginia

  • Medical Oncology Hematology Consultants, Newark Delaware

  • Carolyn B. Hendricks, MD, Center for Breast Health

  • Dana-Farber Cancer Institute

  • Rockefeller Research Laboratories, Memorial Sloan Kettering Cancer Center

  • Palo Alto Medical Foundation, Sutter Health

  • The Adele R. Decof Comprehensive Cancer Center at The Miriam Hospital. The Miriam Hospital is a teaching hospital of The Warren Alpert Medical School of Brown University

  • University Hospitals Case Medical Center Seidman Cancer Center

  • University of Michigan Comprehensive Cancer Center

The opinions expressed in the video do not necessarily reflect the views of ASCO or the Conquer Cancer Foundation.

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