Join a Survivor Support or Advocacy Group
Cancer survivors face unique physical and psychosocial challenges that may not be fully understood by the general population: “You are happy you are in remission, but you are sad for everything that got taken from you.”– cancer survivor. Joining a survivorship support or advocacy group is a way to connect with other survivors who share similar experiences while benefitting from social and educational services provided by these organizations. Relating with peers was the most common support mechanism mentioned by survivors and advocates that we interviewed, and research suggests that personal connections or support group involvement are positively associated with the psychosocial wellbeing of cancer survivors.2,3 “I was thankful to be cancer-free, but I didn’t know where to go, I didn’t know what the next step was.” – cancer survivor and advocate.
Support and advocacy groups provide a range of resources and services for survivors beyond peer-to-peer connections, including (among others) social programs, exercise classes, educational information, and financial resources. Most groups are small, local organizations that focus on a few specific services, while larger organizations such as the Young Survival Coalition and the National Coalition for Cancer Survivorship (NCCS) provide a variety of services and information to cancer survivors.4,5 Additionally, several cancer survivors and advocates reported in our research that Facebook was an accessible source for several types of patient and survivor support groups that serve specific patient populations.
Advocate for your Healthcare
Several cancer survivors that we interviewed mentioned the difficulty of transitioning from oncology care to primary care (continual healthcare from a provider who oversees a patient’s general health and coordinates with specialists to provide comprehensive care.)e to their complex medical history. Cancer survivors commonly experience long-term physical and psychological effects from the therapies they endured and may have a chance of developing a recurrence or a secondary malignancy (a new cancer that is caused by prior treatments) while in remission; thus, primary healthcare of cancer survivors should be tailored to address their unique medical needs. “I find navigating the healthcare system extremely stressful.” – cancer survivor and advocate.
Awareness of this issue has led to the development and implementation of survivorship care plans (SCPs) for patients completing cancer therapy and transitioning to a primary health care setting. SCPs include a summary of the patient’s cancer-related medical history including all therapies received, side effects experienced, potential long-term impacts to be aware of, as well as a personally-tailored cancer screening program to monitor for recurrences and secondary malignancies. Some clinics may automatically provide SCPs to patients at the completion of their therapy, but patients may need to proactively request an SCP if one is not provided. Studies have shown that the distribution of SCPs increase primary health care utilization within the first year after cancer treatment completion and increase physician-implementation of recommended survivorship care. 6-8
In addition to SCPs, primary care survivorship guidelines have been developed by the American Cancer Society (ACS), the American Society of Clinical Oncology (ASCO), and other national committees for several common cancer types.9-11 Patients transitioning to primary care after receiving cancer treatment should discuss these guidelines with their new primary care team to confirm their awareness of such guidelines and their ability to carry out recommendations when applicable.
Try Yoga, Meditation, or Mindfulness Exercises
Cancer survivors experience anxiety, depression, post-traumatic stress disorder (PTSD), fatigue, pain, and insomnia at higher rates than the general population due to the physical and emotional trauma of being diagnosed with and treated for cancer. Survivors that we interviewed reported using yoga, meditation, and/or mindfulness classes as a way to reduce stress, pain, and fatigue. Several studies suggest that the implementation of regular yoga and/or mindfulness training can reduce cancer-related-fatigue, pain, and insomnia; thus, adoption of these practices may improve mental health and quality of life for cancer survivors.12-17 “You never go back to life before. You have to make the life you have now, good.”– cancer survivor and advocate.
There are several yoga/mindfulness classes designed specifically to address cancer patients’ and/or survivors’ unique physical and psychological needs such as Yoga for Cancer Survivors (YOCAS©), a program which includes breathing exercises, Gentle Hatha yoga postures, Restorative yoga postures, and meditation; in addition, there is the Yoga 4 Cancer program which includes training in movement, breath, and resistance, with the goal of managing anxiety and improving survival.14,18,19 There are also several yoga and meditation classes designed for cancer survivors available on YouTube which are free to the public.
To learn or enhance meditation practices, survivors can use Apps such as Insight Timer or Headspace for convenient use. Also, in larger cities, there are local meditation centers or community centers that can provide personal meditation instruction for free or for a nominal donation.
Support Survivorship Research
As cancer therapeutics have become more effective, the number of cancer survivors living in the United States (US) has increased dramatically, with cancer survivors now accounting for about 5% of the US population. Additionally, many pediatric and young adult cancer survivors live decades after their initial cancer diagnosis and treatment. As the cancer survivorship population continues to expand and age, it is imperative that we understand the long-term physical, mental, and financial effects that cancer treatments have on survivors and their families. “If the treatment you give me gets rid of the cancer but I can’t live life the way I am used to, I don’t know if it’s worth it.”– cancer survivor and advocate.
In recent years, researchers have recognized a knowledge gap in cancer survivorship and have made efforts to include cancer survivors in research studies and programs in order to better understand their needs. For example, the American Association for Cancer Research (AACR) has created a Scientist-Survivor Program that connects scientists with cancer survivors and advocates to develop research and public policy that support cancer survivors.20 Advocates and survivors can also lobby local and federal governments for cancer research funding through groups such as the NCCS and ACS. Additionally, cancer survivors can participate directly in clinical research studies to advance our scientific knowledge surrounding how treatments impact life after cancer. In the United States, all open and recruiting clinical trials can be found at ClinicalTrials.gov.21
- Cadence Communications and Research. at https://cadencecr.com/.)
- Raphael D, Frey R, Gott M. Maintaining psychosocial wellbeing for post-treatment haematological cancer survivors: Strategies and potential barriers. European journal of oncology nursing : the official journal of European Oncology Nursing Society 2019;38:36-41.
- Dura-Ferrandis E, Mandelblatt JS, Clapp J, et al. Personality, coping, and social support as predictors of long-term quality-of-life trajectories in older breast cancer survivors: CALGB protocol 369901 (Alliance). Psycho-oncology 2017;26:1914-21.
- Young Survival Coalition. at https://www.youngsurvival.org/.)
- National Coalition for Cancer Survivorship. at https://www.canceradvocacy.org/.)
- Jeppesen MM, Ezendam NPM, Pijnenborg JMA, et al. The impact of the survivorship care plan on health care use: 2-year follow-up results of the ROGY care trial. Journal of cancer survivorship : research and practice 2018;12:18-27.
- Maly RC, Liang LJ, Liu Y, Griggs JJ, Ganz PA. Randomized Controlled Trial of Survivorship Care Plans Among Low-Income, Predominantly Latina Breast Cancer Survivors. Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2017;35:1814-21.
- LaGrandeur W, Armin J, Howe CL, Ali-Akbarian L. Survivorship care plan outcomes for primary care physicians, cancer survivors, and systems: a scoping review. Journal of cancer survivorship : research and practice 2018;12:334-47.
- El-Shami K, Oeffinger KC, Erb NL, et al. American Cancer Society Colorectal Cancer Survivorship Care Guidelines. CA: a cancer journal for clinicians 2015;65:428-55.
- Runowicz CD, Leach CR, Henry NL, et al. American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline. Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2016;34:611-35.
- Cohen EE, LaMonte SJ, Erb NL, et al. American Cancer Society Head and Neck Cancer Survivorship Care Guideline. CA: a cancer journal for clinicians 2016;66:203-39.
- Johns SA, Brown LF, Beck-Coon K, Monahan PO, Tong Y, Kroenke K. Randomized controlled pilot study of mindfulness-based stress reduction for persistently fatigued cancer survivors. Psycho-oncology 2015;24:885-93.
- Duncan M, Moschopoulou E, Herrington E, et al. Review of systematic reviews of non-pharmacological interventions to improve quality of life in cancer survivors. BMJ open 2017;7:e015860.
- Stan DL, Croghan KA, Croghan IT, et al. Randomized pilot trial of yoga versus strengthening exercises in breast cancer survivors with cancer-related fatigue. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 2016;24:4005-15.
- Derry HM, Jaremka LM, Bennett JM, et al. Yoga and self-reported cognitive problems in breast cancer survivors: a randomized controlled trial. Psycho-oncology 2015;24:958-66.
- Sprod LK, Fernandez ID, Janelsins MC, et al. Effects of yoga on cancer-related fatigue and global side-effect burden in older cancer survivors. Journal of geriatric oncology 2015;6:8-
- The Role of Meditation in Cancer Care. 2017. at https://www.ascopost.com/issues/may-25-2017/the-role-of-meditation-in-cancer-care/.)
- Mustian KM, Sprod LK, Janelsins M, et al. Multicenter, randomized controlled trial of yoga for sleep quality among cancer survivors. Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2013;31:3233-41.
- Yoga 4 cancer survivors. at https://givebackyoga.org/programs/yoga4cancer/.)
- Scientist Survivor Program. at https://www.aacr.org/ADVOCACYPOLICY/SURVIVORPATIENTADVOCACY/PAGES/SCIENTISTHARR%3BSURVIVOR-PROGRAM___403E94.ASPX.)
- ClinicalTrials.gov. at https://clinicaltrials.gov/.)