The National Coalition for Cancer Survivorship, the oldest survivor-led cancer advocacy organization, created the widely accepted definition of survivorship and defines someone as a cancer survivor from the time of diagnosis and for the balance of life.1 Cancer survivors have physical, social, psychological, and spiritual needs. Cancer survivors may experience a reduced health-related quality of life attributed to physical impairment and psychological issues. Many cancer survivors experience persistent physical symptoms, late or long-term effects of treatment, decreased physical functioning, and psychological issues such as anxiety and fear of recurrence.2 As cancer survivors have issues and needs that can impact their quality of life, it is essential to ensure that quality survivorship care begins at the time of diagnosis and continues throughout the balance of a patient’s life.
Navigating a cancer diagnosis can be complex and overwhelming for a cancer survivor. Two essential elements that patients can utilize to gain some control during this challenging time are engagement and advocacy for one’s rights. Patients can begin to develop their survivorship care plan at the time of diagnosis by being engaged with their healthcare team and advocating for their rights in regard to their care. Patient engagement and advocacy for one’s rights in survivorship care support the survivor to incorporate their preferences and goals into their care. Patient engagement can result in more effective symptom management, improved adherence to recommended treatment, and improved outcomes.
How a Patient Can Start Survivorship Care at the Time of Diagnosis
Ways for the Patient to Be Engaged in Survivorship Care:
- Finding appropriate information and resources about the diagnosis and treatment
- Discussing and addressing issues of distress and barriers regarding the diagnosis with the healthcare team, navigator, and oncology social worker
- Asking questions and communicating with the healthcare team and navigator about the diagnosis, recommended treatment, available clinical trials, side effects, and the impact on quality of life
- What is the goal of the treatment: to cure the cancer or stop it from growing?
- Which medicines will be administered?
- What is the treatment and where will it take place?
- How often will the patient undergo treatment?
- What are the common side effects?
- How can the patient manage these side effects? When and who does the patient call when they occur?
- How will the treatment make the patient feel? Will he or she be able to go to work?
- Can the patient take other medicines, vitamins, or supplements while receiving treatment?
- How will the patient know if the treatment is working?
- How will the treatment affect sexual activity?
- Being an active participant in the decision-making process regarding the treatment and care
- What are the treatment options?
- What treatment is the patient the best candidate for?
- Discussing with the healthcare team the late and long-term effects of treatment, ongoing maintenance therapy, and plan for follow-up medical management posttreatment
- Having a list of potential late and long-term effects
- Having a list of symptoms of recurrence
- Having a follow-up care and management schedule, including a list of providers responsible for follow-up care and tests warranted for surveillance
- Initiating/continuing health promotion strategies of diet, exercise, and cancer screenings that can lead to improved outcomes
- Discussing with the oncologist and navigator a referral to palliative care for symptom management and cancer rehabilitation services to prevent deconditioning and preserving and/or restoring function in activities of daily living and quality of life
- Discussing with the healthcare team a referral to integrative health and mind–body programs such as acupuncture, yoga, meditation, and expressive art therapies
- Being connected through online community support and participating in a support group for social well-being
- Keeping a document/record of the diagnosis and treatment as well as requesting a treatment summary or survivorship care plan from your navigator
How to Advocate for the Patient’s Rights in Survivorship Care:
- Being engaged and being the central member of the care team
- Having open communication and discussion with the healthcare team about preferences and goals with regard to the cancer care and life in general so they are incorporated into your treatment decision- making process as necessary2
- What is the patient most worried about?
- What is important to the patient?
- What is the patient hoping for?
- Discussing advance directives with the healthcare team
Maintaining the quality of life of a cancer survivor is a key component of survivorship care. The quality of life for a cancer survivor includes their physical well-being by control or relief of acute symptoms and late effects; maintenance of function and psychological well-being with the ability to cope with illness; social well-being with the ability to deal with the impact of cancer on their roles and relationships; and spiritual well-being with the ability to maintain hope and derive meaning from the cancer experience.2 By being engaged, advocating for their rights, and working closely with their healthcare team and navigator, cancer survivors can ensure that quality survivorship care begins at diagnosis and continues throughout the balance of their life.
- National Coalition for Cancer Survivorship. Our mission. https://canceradvocacy.org/about/our-mission. 2021. Accessed January 30, 2021.
- Johnston D, Strusowski T, Bellomo C, Burhansstipanov L. Navigation across the continuum of care. In: Shockney LD (ed). Team-Based Oncology Care: The Pivotal Role of Oncology Navigation. Chapter 5. Cham, Switzerland: Springer International; 2018:85-110.