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What Does "Survivorship" Mean?
The National Cancer Institute booklet uses the term “cancer survivor” to include “anyone who has been diagnosed with cancer, from the time of diagnosis through the rest of his or her life. Family members, friends, and caregivers are also part of the survivorship experience. You may not like the word, or you may feel that it does not apply to you, but the word “survivor” helps many people think about embracing their lives beyond their illness.”
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https://www.cancer.gov/publications/patient-education/life-after-treatment.pdf
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Cancer Nation (formerly National Coalition for Cancer Survivorship)
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Surviving cancer is more complicated than simply being sick or well, having cancer or being cancer free. Instead, it is a continual process that is constantly changing. There may be times when the joy you feel about survival far outweighs any anxieties you may have. Then, there will be times when your fears and uncertainties seem to take over your life, and you wonder if you will ever feel normal again.
This program will introduce you to skills to help you adapt to your life after cancer. The goal is to help you, a cancer survivor, be as healthy as possible within your personal circumstances.
After listening to this Toolbox program, you will better understand:
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Common physical effects of cancer and its treatment, and what kind of medical records you need to keep to maintain a personal health history.
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How to address concerns about sexuality and fertility.
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How to support family relationships that may have changed during treatment.
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The emotional aspects of cancer, including anxiety, depression, grief, and distress.
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Health directives, wills and trusts, power of attorney, and financial planning.
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How to live with hope while dealing with uncertainty.
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After Treatment Ends
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While it is normal to look forward to the day when chemotherapy ends and life goes back to normal, it can often be a bumpy time of transition and readjustment. During surgery and chemo when the focus is on survival, your healthcare team, friends and family are generally right there for you. Once your treatment ends, however, the focus dissipates while the trauma and grief of the experience may come forward to finally be processed. This is a phenomenon now understood by cancer experts, who suggest developing a “Survivorship Care Plan” that includes pro-active ways to move forward after treatment.
A New Normal
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“Getting used to life after cancer treatment takes time. Some people feel a little lost, not knowing what to do next. Dealing with the emotions related to cancer can feel like a roller coaster. You may feel relief, but also feel anxious and worried. Some people feel sad or even have depression. It can take time to recover from treatment.”
“One of the hardest things after treatment is not knowing what happens next. Those who have gone through cancer treatment describe the first few months as a time of change. Some think of this as getting used to a ‘new normal.’ It's not so much ‘getting back to normal’ as it is finding out what's normal for you now. People often say that life has new meaning or that they look at things differently.”
“You may see yourself in a new way or find that others don't act the same towards you now. Whatever your new normal may be, give yourself time to adapt to the changes. Take it one day at a time.”
https://www.cancer.gov/about-cancer/coping/survivorship/new-normal
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Coping with Fear of Cancer Recurrence
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“Fear of recurrence is the most common emotional difficulty that people tell us they have after they’ve completed [cancer] treatment.”
“Fear that the cancer will come back, or recur, is another source of distress for many survivors. People often feel especially anxious when they’re due for a scan or other follow-up medical visit—a feeling that some cancer survivors have dubbed scanxiety.”
“Approaches that have been shown to be helpful for managing anxiety and distress in cancer survivors include a type of psychotherapy called cognitive behavioral therapy, mindfulness-based stress reduction, self-management, exercise, and—in some cases—antianxiety or antidepressant medications.”
https://cancercontrol.cancer.gov/ocs
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Please also visit this guide's section on recurrence HERE
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“Chemo Brain”
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“While this side effect is often called ‘chemo brain,’ people with cancer can have memory, thinking, and focus changes for other reasons. Changes can happen in people with cancer who have not been treated, gotten other treatments, or have been off treatment for a while.”
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“Changes in thinking may not be easy for other people to see. People in your life might not even notice anything. Still, if you have these changes, you will most likely know it.”
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“Changes in thinking might interfere with your usual activities like school, work, hobbies, or social get-togethers. These activities might take more mental effort than usual and be tiring.”
“For most people, these changes only last a short time. Other people can have long-term or delayed symptoms. When changes in thinking start, how long they last and how much trouble they cause may be different for each person.”
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Exercise, meditation, movement therapy and focused rehabilitation may help with changes in thinking.
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A Cancer Survivorship Plan
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“Survivorship after treatment is an important phase of cancer care. The Institute of Medicine’s (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition, recommends that each cancer patient receive a Survivorship Care Plan—a plan for wellness to help you continue to receive the best health care.”
The five steps to be included in developing a survivorship plan are:
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create a record of your medical history;
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get a cancer treatment plan summary from your health care team;
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get a follow-up care plan;
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ask your health care team to address your concerns;
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keep your health care team informed.
https://livestrong.org/resources/your-survivorship-care-plan/
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University of Colorado Cancer Center
The CU Cancer Center provides survivorship care plans (SCP) for its patients who are in surveillance. An SCP is a document that summarizes a patient’s diagnosis, treatment and reasons to contact their health care teams. This document describes the recommended follow-up plan and contains wellness tips and resources. It is designed to be shared with your primary care team.”
In addition, the center also offers monthly group-based meetings.
https://www.uchealth.org/services/cancer-care/metro-denver-cancer-support-care/#survivorship
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​Colorado Cancer Coalition: Survivorship & Palliative Care Task Force
“The Survivorship & Palliative Care Task Force is a collection of individuals impacted by cancer, as well as advocates and professionals who provide quality cancer care throughout Colorado. We provide a valuable, collaborative networking platform of comprehensive and diverse perspectives for cancer care delivery within Colorado. Our interdisciplinary group promotes the sharing of resources for patients and caregivers and fosters statewide interaction and professional development.”
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“We seek to break down silos and to form statewide partnerships in both rural and urban Colorado.”
Survivorship and Palliative Care - Colorado Cancer Coalition
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CancerCare
“CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer.”
Cancer | Professional Support Services and Information | CancerCare
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Cancer.net
“Cancer.net is ASCO’s (American Society of Clinical Oncology) patient information website, hosting a wealth of information and resources for people diagnosed with cancer and their families and caregivers. With information on over 120 types of cancer, visitors to the site can find medical information, tips for treatment management, resources for navigating care, and much more. Cancer.Net’s content addresses every phase of a patient’s experience with cancer, from initial diagnosis to survivorship, along with helpful information for caregivers and tools for oncology professionals.”
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