Cancer Survivors - Definitions
Cancer Survivor
A cancer survivor is an individual with cancer of any type, current or past, who is still living.
en.wikipedia.org/wiki/Cancer_survivors
ROJ Note: I like this simple definition. However, I like to add 10 years at least with no recurrence (or in remission). I will also include those patients who died after 10 years with no recurrence and the cause of death is not due to the cancer. My personal observation is that chances of recurrence in this group of patients, 10 years with no recurrence, will be 1%.
My operational definition also jibes with how Memorial Sloan-Kettering Cancer Center (New York) defines survivor - as a “particular period in a cancer patient's life, which is post treatment, separate from diagnosis and treatment and from end-of-life care.”
ROJ@12jan18;13dec3
Cancer Survivor
The term cancer survivor includes anyone who has been recently diagnosed with, is living with, or has recovered from cancer.
http://lungcancer.about.com/od/glossary/g/cancersurv.htm
Cancer survivor: Someone who has received the diagnosis of a potentially fatal form of cancer and is therefore forced to face his or her own mortality. The phrase was coined on July 25, 1985 in an essay in the New England Journal of Medicine by Dr. Fitzhugh Mullan. Mullan's essay was entitled "The seasons of survival: Reflections of a physician with cancer." As a young physician, Mullan had learned in 1975 that he had a deadly malignancy, a mediastinal seminoma. He then began passing through what he called "the seasons of survival."
There is far from universal agreement among those who have had cancer about the term cancer survivor. Some object to it, saying they are cured. Others say they are living with cancer. And still others prefer to put cancer behind them, and argue that being called a cancer survivor stigmatizes them. However, there is no term that by consensus might be better and the term cancer survivor seems here to stay.
http://www.medterms.com/script/main/art.asp?articlekey=33021
Survivor / Cancer Survivor
One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life.
http://www.cancer.gov/dictionary?cdrid=450125
When Can I Say I Am a Breast Cancer Survivor?
By Pam Stephan, About.com Guide
Updated September 11, 2009
Question: When Can I Say I Am a Breast Cancer Survivor?
Surviving But Not Cured
It's hard to talk about being a breast cancer survivor, because there is still no cure. Your doctor may say that you are in remission. Others of us can say we are NED - No Evidence of Disease, or we're stable - for those of us that were diagnosed with metastatic disease and are progression-free. The National Cancer Institute defines a cancer survivor this way: "An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included."
Answer:
Survivor: one who remains alive, one who continues to live
A Survivor at Diagnosis
Breast cancer needs time to grow, so when something shows up on a mammogram, or you're doing your monthly BSE and notice something different, most likely your breast mass has been lurking there for longer than you'd like. Breast cancer doesn't suddenly blossom when you have your mammogram or breast biopsy - so when you're diagnosed, you've been living with it for a while. In that sense, you're a survivor right away.
Surviving Treatment and Public Opinion
Debbie, who commented on my blog, told her story of looking for support while only three months out of treatment for breast cancer. She lives in a small rural town, and it has only one general-purpose support group. Eager for answers and advice, and full of ideas, Debbie was shocked when the group's members rejected her, saying, "You are not yet a survivor -- so you are not welcome." Debbie, who does consider herself a survivor, took the group's judgment as a challenge, and has decided to "work tirelessly to change ideas and make heath care and all supporting activities available to everyone."
Trauma and Survival
Barbara, a clinical psychologist, wrote me saying, "In the world of psychology, we generally use the word survivor when we are talking about a person who has undergone trauma. I can think of few things that are as traumatic as being diagnosed with breast cancer." Everyone who has been diagnosed with breast cancer has had to endure emotional upheaval as well as some kinds of medical treatment. The diagnosis, the disease, and the treatment all bring trauma, but we can refuse to be defined by our cancer.
Victim, Patient, or Survivor?
As detection and treatments have improved, women and men who have been diagnosed with breast cancer are living longer. We are not powerless in the fight, and do not have to view ourselves - or be seen as - cancer victims. While we are in primary treatment, we can call ourselves cancer patients or cancer survivors. After treatment, you may feel comfortable saying that you are a survivor - or you may wish to put it all behind you, and move on. Helen, when adding her opinion to the fray, wrote, "You survive the blow to the stomach when you learn you have breast cancer. You survive the surgery, you survive the chemo, and then you survive the 3-month and 6-month checkups. The thing is: You Survive!" Cancer survival is indeed a process, marked by checkups, changes, and sometimes long-term therapies.
You Have The Final Word on Survival
I took a poll of my readers, asking them, "When Do You Become a Breast Cancer Survivor?" I offered them options: at diagnosis, after surgery, at the end of treatment, after your 5-year checkup, or whenever you say you are a survivor. More than half of all responses favored the idea that You are a survivor when you say you are - not based on the opinion of others, not measured by medical milestones, not codified by your culture - but based solely on your own declaration. You may feel comfortable with this - or it may be a stretch for you. I hope that anyone with breast cancer will call themselves a survivor, and that no-one is ever made to feel that they aren't welcome to the club! As Veda Cazzola, of my local Breast Cancer Resource Center told me when I made my first call for help, "You don't join our club because you want to, but when you do, we sure will treat you well!"
http://breastcancer.about.com/od/whatisbreastcancer/f/breast-cancer-survivor-defin.htm
Did You Know... The Facts About Cancer Survivorship?
Carolyn Vachani, RN, MSN, AOCN
The Abramson Cancer Center of the University of Pennsylvania
Last Modified: June 23, 2009
Cancer survivorship has gotten a great deal of media attention in recent years, but how much do you really know about survivorship?
The terms “survivor” and “survivorship” have different meanings for different people. One widely used definition of a survivor is any person who has been diagnosed with cancer, whether or not he or she has completed treatment. Other definitions limit survivors to those who have completed initial therapy and are in remission, while others include the loved ones of a person with cancer in the definition. Cancer survivorship is most often defined as the process of living with, through, and beyond cancer. The following facts define a survivor as any person with a diagnosis of cancer.
There are an estimated 11 million cancer survivors living in the United States today.
This has increased from a mere 3 million in 1971. The increase may be attributed to improved detection methods and treatments.
Between 2000 and 2050, the number of cancer survivors over the age of 65 is expected to double as the baby boomer generation ages.
60% of all cancer survivors are age 65 or older.
One in every seven survivors were diagnosed over 20 years ago!
66% of all patients diagnosed with cancer today will live more than five years.
As of 2002, 38% of survivors were of “working age” (ages 20-64 years old).
80% of people return to work after a cancer diagnosis.
Studies have shown little, if any, difference in the work performance of cancer survivors who return to work.
One in five survivors will have cancer related work limitations up to five years after diagnosis.
Many survivors describe their cancer journey as a life changing event. They report a new outlook on life and a better ability to “not sweat the small stuff”.
Treatment with surgery, chemotherapies (and other cancer treatments), and/or radiation can leave survivors at higher risk for health complications compared with their peers who have not had such treatments. Some complications may not develop for 10 or more years after treatment (these are often called late effects).
Survivors should keep records of the treatments they received for future reference. Use OncoPilot forms to organize a treatment record.
Survivors should have a survivorship care plan developed that helps them identify their risk for late effects, how to monitor for them and preventive steps they can take. Use LIVESTRONG Care Plan to develop a plan you can review with your healthcare team.
Finding the resources a survivor needs can take some work, but the OncoLink survivorship section can get you started.
http://www.oncolink.org/coping/article.cfm?c=7&s=34&ss=80&id=1032
A cancer diagnosis may lead to a change in a person's priorities regarding relationships, career, or lifestyle. Some people with a history of cancer – or survivors – talk about appreciating life more and gaining a greater acceptance of self, and some survivors become anxious about their health and uncertain of how to cope with life after treatment. Survivorship is a unique journey for each person.
Defining survivorship
Surviving cancer or “survivorship” can be defined in different ways. Two common definitions include:
Having no disease after the completion of treatment,
The process of living with, through, and beyond cancer. By this definition, cancer survivorship begins at diagnosis. It includes people who continue to have treatment to either reduce risk of recurrence or to manage chronic disease.
Sometimes, doctors use terms to describe the specific period a survivor is experiencing. These can include:
Acute survivorship: describes the time when a person is being diagnosed and/or in treatment for cancer.
Extended survivorship: describes the time immediately after treatment is completed
Permanent survivorship: describes a longer-term period, often meaning that the passage of time since treatment is measured in years.
Survival statistics
The number of people with a history of cancer in the United States has increased dramatically, from 3 million in 1971 to about 12 million today. About 68% of people diagnosed with cancer today are expected to live at least five years beyond their diagnosis. And, approximately 15% of all cancer survivors were diagnosed more than 20 years ago. Most cancer survivors today are age 65 or older.
Most cancer survivors were initially diagnosed with common cancers. For example, 22% of survivors had breast cancer, 20% had prostate cancer, 9% had colorectal cancer, and 8% had a gynecologic cancer, such as uterine, ovarian, and cervical cancers.
Statistics adapted from the American Cancer Society's publication, Cancer Facts & Figures and the National Cancer Institute Office of Cancer Survivorship.
http://www.cancer.net/patient/Survivorship/About+Survivorship
What's in a Name: Who Is a Cancer Survivor?
To a layman, the term “cancer survivor” might suggest a person who has beaten their cancer. But to those in the cancer field, it means any number of things, from “patient” to someone who is “post treatment,” to a person who is cancer free but cares for a loved one with the disease.
In fact, the definition of the word has become so muddy that the organization that pushed for its use several decades ago is now saying that a new definition is needed.
What is meant to be a motivating psychosocial term is increasingly being co-opted by researchers to define their own areas of interest, said Ellen Stovall, president of the National Coalition for Cancer Survivorship (NCCS), which calls itself the oldest “survivor-led” advocacy organization in the nation.
“There is a lot of confusion and turmoil surrounding the word. In order to establish a field of study, some people have adapted the word to suit their own needs—to delineate a research agenda,” she said. “ The NCCS has never tried to force the word into a realm of science, where it wasn't relevant. It is descriptive, not meant to be biologically correct.”
The NCCS put forth a definition of cancer “survivor” in 1986 at a time when cancer was a disease that people needed to learn to fight. The word, Stovall said, was designed to empower patients to make decisions about their care and to push for better research and treatment. And because so many people are “touched by cancer,” the NCCS definition of the term also included families and caregivers of cancer patients.
But the advocacy definition of “survivor” also recently made it to the National Cancer Institute, which formally defines the word on its Web site: “An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.”
The NCI counts a diagnosed individual who is still living as a survivor no matter when that diagnosis was made or whether it was successfully treated, but it does not incorporate family and friend figures into statistical reports, said Julia H. Rowland, Ph.D., director of the Office of Cancer Survivorship. The definition was broadened as a nod to advocates, “to highlight the fact that family members are “often `secondary survivors' that are often profoundly affected by the cancer diagnosis of a loved one,” she said. “It was never our intent to analyze or count family members in combination with data about those actually diagnosed and/ or treated for cancer. Information on these individuals will never appear in our prevalence data, for example.”
In its newly released 2003 annual report, “Living Beyond Cancer: Finding a New Balance,” the President's Cancer Panel defined “ survivor” in terms that could be viewed as conflicting with each other. They said it meant “anyone who has ever had a cancer diagnosis,” but added that it is also synonymous with “ patient,” implying that a person who is post treatment, and maybe even cancer free, is still a patient.
The American Cancer Society has also struggled with the term, said Greta Greer, manager of the organization's cancer survivors network, and so it uses a mix of descriptions, including the phrase “people living with cancer.”
“Patient” is perhaps used less frequently than “ survivor,” said Greer, because “patient is not consistent with the newer view of an informed and active participant in care, which is what `survivor' implies.”
Mary McCabe, head of a new cancer survivorship program at Memorial Sloan-Kettering Cancer Center, New York, said that her program defines survivor as a “particular period in a cancer patient's life, which is post treatment, separate from diagnosis and treatment and from end-of-life care.”
McCabe said that there appears to be a backlash against use of the word among those living with the disease. Some don't want to be called survivors “ when they barely feel alive,” while others want to distance themselves from “the time they were in treatment,” she said.
Stovall said there is, in fact, an effort under way to define precisely how the word should be used in the future. A group of experts, newly convened by the Institute of Medicine to report on the adult survivorship experience, spent a good part of its first meeting grappling with what being a survivor meant, said Stovall.
The word can also be used to suggest more success in winning the war on cancer than is warranted, said Fran Visco, president of the National Breast Cancer Coalition (NBCC). Defining anyone who has ever had breast cancer as a survivor “paints more of a pretty picture of breast cancer than exists,” she said. “We haven't made significant progress in treating breast cancer, and this is not a message the public wants to hear.”
Still, NBCC uses the word, “although we are not necessarily happy with it,” she said. “There is a lot of contention among women diagnosed with breast cancer about what label we should use. Some want to adopt `women living with breast cancer,' because there is no guarantee that the cancer will not recur. Some even want to be called victims. But no one has yet come up with a better term.”
http://jnci.oxfordjournals.org/content/96/19/1414.1.full
ROJ@12jan18; 12feb7;13dec3