It may sound surprising to some, but not all cancer research focuses on finding a treatment to cure a disease.
In fact, research efforts are well underway in the realm of cancer survivorship, including continued support for physical, mental, and emotional health of cancer patients.
This research is vitally important because just like research looking for a cure, it impacts patients and their loved ones. It is often thought that once cancer treatment ends, a cancer survivor is expected to re-integrate into their ‘normal’ lives with ease, however, that is far from the truth.
There are an array of survivorship issues that come up that must be addressed to support survivors and their families. We want to give a brief overview of cancer survivorship and some of the issues impacting survivors.
Numbers and Definitions
The National Cancer Institute (NCI) estimates there are 15.5 million cancer survivors alive in the US today. They expect the number to grow to over 20 million by 2026.
There are over 1 million colorectal cancer survivors in the US. (The One Million Strong!)
Who is considered a cancer survivor?
The National Coalition for Cancer Survivorship (NCCS) describes a survivor as a person diagnosed with cancer, from the time of initial diagnosis onward. The National Comprehensive Cancer Network (NCCN) describes a cancer survivor similarly as an individual from the time of diagnosis through the balance of his or her life. The National Cancer Institute (NCI) utilizes the same definition, however, they add that “family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.”
Survivors are not limited to those who’ve been diagnosed with cancer and declared “no evidence of disease” (NED). By definition, “survivor” includes those undergoing cancer treatment and those living with the disease.
Living with Cancer
A survivor is someone who lives with cancer. After active treatment ends, many cancer survivors face new challenges. Life does not seamlessly return to “normal” when the words “no evidence of disease aka NED” or “remission” are uttered by an oncologist.
The challenges for those living with cancer can be very difficult and affect physical health, mental health, relationships, work-life balance and more. Quality of life may decrease as challenges arise. Often, there are not adequate resources to address the various concerns that often arise when treatment ends like:
- Continued medical appointments and follow-up care
- Late effects of treatment
- Post-traumatic stress disorder
- Secondary cancers
- Memory problems
- Fertility issues
- Accepting and adapting to a “new normal“
- Reduced social support networks after treatment ends
- Challenges navigating transition of care
Primary Care or Oncologist?
Currently, there is uncertainty and lack of clarity amongst experts around what type of care cancer survivors need, and who should deliver that care (for example: primary care doctors or oncologists?).
Many think care should shift back to the primary care doctors, with an emphasis on treating the whole person by identifying the needs of the individual as a survivor in addition to their general health needs. However, many others think of the oncologist as the “quarterback” of the team, the doctor who is most up to date and well informed about the needs of cancer survivors.
This area requires greater attention, as many patients and survivors don’t feel their primary care docs are up-to-date on the unique needs of cancer survivors and prefer seeing the oncologist, who is likely also taking on new cancer patients regularly.
Why a Treatment Summary and Survivorship Care Plan?
A survivorship care plan is a comprehensive document with recommendations for each patient’s follow-up, psychosocial, and non-cancer related care needs of the patient. A survivorship care plan can help a survivor not feel “lost in transition” and help patients transition from active treatment under the care of an oncologist to a survivor out of treatment or on maintenance therapy.
All patients out of active treatment or on maintenance therapy are encouraged to get a survivorship care plan. Ask your oncologist about this!
What about psychosocial/mental health?
From the time of diagnosis, a cancer survivor experiences various levels of distress. While providers spend time treating the physical cancer, mental health is often left unaddressed. Issues that fall into the psychosocial realm are often avoided by oncologists and treatment teams. Patients often don’t bring them up. This leads to a negative effect on their quality of life.
Psychosocial oncology is concerned with understanding and treating the psychological, emotional, social and spiritual aspects of cancer along the continuum. Individuals who address these issues with patients include onco-psychologists, psychiatrists, social workers and other mental health professionals. Some topics addressed include:
- Practical support (managing finances, work-life balance, etc)
- Lack of social networks
- and more.
Psychosocial health may be treated differently for each individual, depending on their age and case. For example, a young adult may be struggling with fears about reproductive health, whereas an older adult may face challenges around retirement. It is important to note that psychosocial health involves meeting an individual patient where they are in terms of coping with their diagnosis. Professionals provide support as needed.
As noted earlier, it is often thought that once cancer treatment ends, a cancer survivor is expected to feel joyful and a sense of return to how things were pre-cancer. This is so far from true, as many survivors, those living with disease and those off treatment, experience challenges adapting to their “new normal.”
The Role of Survivorship Research
Survivorship research is playing a critical role in elevating the type and quality of care directed towards people living with cancer.
According to the NCI, cancer survivorship research encompasses the physical, psychosocial and economic sequelae of cancer diagnosis and its treatment among both pediatric and adult survivors of cancer. It also includes … issues related to healthcare delivery, access and follow-up care, as they relate to survivors.
Survivorship research focuses on the health and life of a person with a history of cancer beyond the acute diagnosis and treatment phase. It seeks to both prevent and control treatment-related outcomes such as:
- late effects of treatment
- second cancers
- poor quality of life
- among others.
This research provides a knowledge base regarding optimal follow-up care and surveillance of cancers. It also optimizes health after cancer treatment.
Fight CRC and Cancer Survivorship
Fight Colorectal Cancer is dedicated to making psychosocial health a more front-and-center topic for survivors and supporting survivorship research. Here’s how we’re involved:
- We spread the word about the importance of survivorship and psychosocial care to treat the whole patient to all who follow us via our website, social media and emails.
- We’re creating meaningful resources for CRC survivors. (Check out our resource library & patient resources blog!)
- We connect and collaborate with researchers in the field to ensure the CRC patient voice is infused in research and not overlooked through our research advocacy and by driving research.
- We attend conferences like the Cancer Survivorship Symposium and the American Psychosocial Oncology Society annual meeting to learn the latest research on survivorship and represent CRC survivors.
- We listen to what matters to you and create education around it. If there is a survivorship topic you would like to read more about, please leave a comment below!
If you’re a survivor, congratulations! We fight for you. We hope you see the unique place you’re in and do what you can to maintain a good quality of life. If you’re sorting through “what now,” here’s what we recommend:
- Talk to your doctor about survivorship. Ask for a survivorship care plan. Discuss your follow-up care.
- Find a mental health professional. Even if you’re feeling “okay,” talking to someone in this role can be beneficial. Dealing with cancer and transitioning away from active treatment or finding your new normal is not always easy.
- Pay attention to yourself and your needs. Recognize how you feel and write it down. Be intentional to be self-aware – what brings you joy and happiness? How do you stay healthy? Try to engage in those activities.
Join the Fight
One great way to work through survivorship is connecting with other survivors at Fight CRC. Joining your voice to a community of others who “get it” is a powerful way to not only hear other’s stories but find the words for your own. Get started by sharing your story and sign up for our email updates. Then, check out all the ways to join the fight!