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Survivorship – Guide


What Does “Survivorship” Mean?

The term “cancer survivor” includes 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.” www.cancer.gov/publications/patient-education/life-after-treatment.pdf

National Coalition of Cancer Survivorship
“In 1986, the founders of NCCS [National Coalition of Cancer Survivorship] saw a need for language that truly told the story of life after a cancer diagnosis. At the time, there were a growing number of people living beyond their cancer diagnosis and treatment. Many of them were experiencing an array of health issues related to their treatment, as well as late and long-term effects. They also faced psychological, financial, emotional, spiritual, and social challenges. The phrase “cancer survivorship” was created to describe this broad experience on the cancer continuum (living with, through and beyond a cancer diagnosis). Many continue to struggle with how to define “survivor,” or whether to use it at all. We recognize that the term “cancer survivor” may be seen differently by people based on their own experiences.”www.canceradvocacy.org/news/defining-cancer-survivorship

A New Normal
“The end of cancer treatment is often a time to rejoice. Most likely you're relieved to be finished with the demands of treatment. You may be ready to put the experience behind you and have life return to the way it used to be. Yet at the same time, you may feel sad and worried. It can take time to recover. And it’s very common to be thinking about whether the cancer will come back and what happens now. Often this time is called adjusting to a “new normal.” You will have many different feelings during this time. 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. 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.” www.cancer.gov/about-cancer/coping/survivorship/new-normal

Chemo Brain
“For years people with cancer have worried about, joked about, and been frustrated by the mental cloudiness they sometimes notice before, during, and after cancer treatment. Even though its exact cause isn't always known, and it can happen at any time during cancer, this mental fog is commonly called chemo brain. Patients have been aware of this problem for some time, but only recently have studies been done that could help to explain it.” https://www.cancer.org/cancer/managing-cancer/side-effects/changes-in-mood-or-thinking/chemo-brain.html

“Though patients and survivors often complain of chemo brain during and after treatment for cancer, a growing body of research shows that there are multiple causes behind the cognitive decline many survivors experience.” https://www.curetoday.com/view/cognitive-changes-after-cancer-treatment

A Cancer Survivorship Plan
LIVESTRONG® Survivorship Center of Excellence at Dana Farber Cancer Institute
“The Dana Farber survivorship program is one of seven LIVESTRONG® Survivorship Centers of Excellence supported by the LIVESTRONG® Foundation. We offer resources, support, and information to cancer survivors. Our comprehensive cancer survivorship program includes:
Support groups and educational classes, ongoing cancer survivorship needs assessment, clinical programs for cancer survivors and cancer survivor research and distribution.” https://www.dana-farber.org/cancer-care/treatment/adult-survivorship-program 877-442-3324

Cancer Survivorship Care Plans
“A treatment summary and survivorship care plan is a report of your medical history created for both you and your health care providers to help ensure you receive appropriate follow-up care. The plan includes a recap of all treatments you’ve received, as well as follow-up care instructions and important information needed to monitor for late- and long-term effects of your cancer treatment. You and your healthcare team are the best source for creating treatment summaries and survivorship care plans. To help you start the discussion, check out these tools:” LIVESTRONG® Care Plan:
https://www.livestrong.org/we-can-help/healthy-living-after-treatment/your-survivorship-care-plan 877-236-8820

ASCO Cancer Treatment Summaries: www.cancer.net/survivorship/asco-cancer-treatment-summaries

Journey Forward Survivorship Care Plan: http://www.journeyforward.org/what-is-cancer-survivorship-care- planning

ASCO Answers: Cancer Survivorship booklet
“As you finish cancer treatment, you might be wondering: What happens next? The answer is different for every person. Some people return to the lives they were leading before their diagnosis, while the lives of others are significantly changed by their cancer experience. The challenge for every survivor is figuring out how to return to everyday life while adjusting to the effects of the disease and its treatment.” See this booklet from the American Society of Clinical Oncology at Cancer.net. for more information. www.cancer.net/sites/cancer.net/files/cancer_survivorship.pdf

NCCS Cancer Survivor Toolbox® - Living Beyond Cancer
“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. The  Toolbox is available for listening  in both English and Spanish 
www.canceradvocacy.org/resources/cancer-survival-toolbox/special-topics/living-beyond-cancer  877-622-7937