Cancer Survivorship
A New Generation of Survivors: Living Longer With and Beyond Cancer
Cancer patients are living longer than they have in the past and the number of survivors in the US continues to climb.
"As of January 2022, it is estimated that there are 18.1 million cancer survivors in the United States. This represents approximately 5.4% of the population. The number of cancer survivors is projected to increase to 22.5 million by 2032.
In 2022, 69% of survivors have lived 5+ years since their diagnosis, 47% have lived 10+ years since their diagnosis, and 18% of survivors have lived 20+ years since their diagnosis." (source)
Patients are living longer after cancer diagnoses which means we are entering a bit of uncharted territory. We are not entirely sure how treatments may impact patients 10-20 years from now, or what long-term issues may arise. We just don't have the data yet and there's a lot we still don't know. As a result, it's important to gather as much information as possible when making these types of consequential medical decisions. Consider how each decision you make now may impact your care, quality of life, treatment options, and survival in the future. The impact of long-term and late-term side effects on your future quality of life should be thoroughly considered. The chances are you will live for years to come so look out for "me in 5 years," "me in 10 years," and "me in 20 years," alongside "me next week," and "me in a few months." Your future self will thank you for being so thorough.
So who "counts" as a cancer survivor?
"In 1986, the founders of NCCS (National Coalition for Cancer Survivorship) set out to establish an organization that would replace the words “cancer victim” with “cancer survivor,” and bring about a different notion of the cancer experience. The founders envisioned an organization that would deal with the full spectrum of survivorship issues related to living with, through and beyond a cancer diagnosis. NCCS’s definition of a survivor, from the time of diagnosis and for the balance of life is now the norm for the cancer community and beyond. NCCS has expanded its definition of survivor to include family, friends, and caregivers." (source)
Once you have been diagnosed with cancer, you are considered a cancer survivor. Whether you want to call yourself a survivor though is up to you, of course. This page will focus more on survivorship care and the experience that follows the completion of treatment.
Survivorship Care Plans
When you receive word that your cancer treatment is nearing an end, you'll want to start preparing for what will come next. Some cancer centers and clinics provide detailed Survivorship Care Plans to patients when patients are released from regular care and treatment. These plans include a recap of your diagnosis, the treatments you received, and the outcome of the treatments. More importantly, it should include your surveillance schedule for the next 5 years with specific details regarding the frequency of scans, bloodwork, and other tests you'll need to monitor your health and keep an eye out for cancer recurrence. The plan should also cover the side effects you've experienced and continue to experience, and which medical professionals will be responsible for caring for different aspects of your health care moving forward. For example, what will you see your oncologist for and what will you see your primary care doctor for? Which symptoms or side effects should be handled by a different specialist? When will you receive other cancer screening tests (mammogram, colonoscopy, pap, PSA, etc.)? What can be done to reduce your risk of recurrence? What signs and symptoms might indicate a recurrence? What do you need to do to achieve and maintain good health in the coming years?
There is much more substance and complexity to entering survivorship care than is usually discussed. Dig deep and ask about things you want to know while you have your doctor in front of you. When you transition from regular, intense medical care and attention to intermittent, brief and/or infrequent medical attention, it can be a bit jarring. Take advantage of the time you have remaining as an "active" patient to ensure your needs are met during this crucial changeover.
Not all oncologists will provide you with a comprehensive survivorship care plan, but that doesn't mean you have to go without. You can find and build your own plan using the resources at the bottom of this page. Bring this plan with you to one of your last oncology appointments so you can complete all the sections and prepare for survivorship with your doctor. If you've already completed treatment and are currently in your survivorship "era," you can still benefit from bringing a plan to your next check up with your oncologist. These plans are intended to cover a 5-year span so being 1-2 years post treatment does not exclude you from reaping the benefits. There is still opportunity for you to survive better than you are right now. Put your plan in place!
Fear of Cancer Recurrence
A Real Psychological Burden
Patients and their loved ones go through hell and back to get to NED, and it's understandable how heavy and haunting the idea of cancer returning can be for so many.
Entering survivorship care following the conclusion of treatment brings about a bevy emotions, though happy feelings like relief and gratitude can be easily overshadowed by the fears and uncertainties that accompany this transition. It's normal to feel worried, untethered, fearful, numb, lonely, or in limbo, even if everything around you is positive, hopeful, or celebratory. This is serious business and your natural emotional response to transitioning beyond treatment, whatever it may be, is real and valid. It doesn't make you an ungrateful, broken, or negative person. It just makes you human.
You and your family have just been through some complex sh*t, emotionally and physically, and it takes time to recover, often more time than we realize. During this time, there are many feelings and thoughts to reconcile, new routines to adopt, new priorities and challenges to tackle, changes in relationships, career, lifestyle, and self-image to adapt to, and redefining meaning and purpose in your life. There's a lot going on, and ringing the bell doesn't simply sweep it all away or put it in the past. Give yourself time to work through these emotions and changes, talk to your doctors about how you're feeling, and seek support from family, friends, fellow patients, religious groups, support groups, and/or professional counselors and therapists.
While feeling all of these things is widely shared among cancer patients and their loved ones, the fears and worries shouldn't consume you, take you away from things and people you love, or dictate how you live your life moving forward. A "healthy" amount of concern may help keep you on top of your surveillance plan and maintaining good health, but persistent invasive thoughts need to be acknowledged and remedied. You do not need to suffer. You should not suffer. Speak up to get the support and help you deserve so you can more peacefully and confidently navigate cancer survivorship and your future.
"For many patients, understanding their specific risk of recurrence can influence their treatment choices, follow-up care intensity, and lifestyle adjustments." (source)
What's a Cancer Recurrence? What's a Second Cancer?
"Cancer recurrence is when cancer is found in a patient after treatment has been completed and a period in remission has passed. When cancer recurs, it can either come back in the same location as the initial tumor or in another part of the body. If [a] biopsy proves that it is the same primary cancer as the patient had previously, even if it recurs in a different location of the body, it is known as a cancer recurrence. Alternately, if the biopsy reveals a different cancer type, it is known as a second primary cancer. There are ongoing clinical studies helping refine treatments to decrease long-term new cancer risk." (source)
"Cancer may return weeks to years after initial treatment. This risk exists even though no remaining cancer could be found with scans or tests. Recurrent cancer may be more aggressive than the original cancer if it’s already spread to other parts of the body or if it’s become resistant to chemotherapy or radiation therapy. The sooner the cancer returns, the biology of the tumor tends to be more aggressive. There’s no way to guarantee that cancer won’t return. That said, recurrences are less likely the more time has passed from the original cancer. Recurrence differs from developing a second form of cancer, which is far less common." (source)
"Current research shows that cancer survivors in general have an increased chance of developing cancer compared to people of the same age and gender who have not had cancer. This means that it is even more important for cancer survivors to be aware of the risk factors for second cancers and maintain good follow-up health care. One to three percent of survivors develop a second cancer different from the originally treated cancer. The level of risk is small, and greater numbers of survivors are living longer due to improvements in treatment." (source)
Fear of Cancer Recurrence is Normal and Very Common
"Fear of cancer recurrence (FCR) is a normal and very common emotional reaction to finishing cancer treatment. For some this fear will gradually decrease over time, although some degree of fear may always remain. For others, fears about their cancer returning, or of developing a new cancer, can endure over time and can be severe enough to impact their quality of life.
Fear of recurrence can also influence how individuals engage with healthcare after finishing cancer treatment, for example by making them avoidant of follow-up tests because of the anxiety that those tests cause, or by seeking excessive scans and testing for reassurance, which can also counterproductively increase anxiety.
Research has shown that fear of cancer recurrence is one of the top issues facing those living beyond cancer, and that psychosocial support for these fears is a primary unmet need." (source)
Key Features of Significant Fear of Recurrence
"A recent study of experts in the field of FCR identified the following key features of clinically significant FCR: high levels of preoccupation or worry, worry that is persistent, and hypervigilance or hypersensitivity to bodily symptoms, where any of these features last for at least 3 months. Other important aspects include functional impairment and maladaptive coping strategies such as excessively seeking reassurance from medical professionals, excessive body checking, or avoiding medical appointments." (source)
Problems Eating, Making Decisions, Concentrating, and Finding Joy
"People with significant cancer-recurrence fear may experience problems sleeping and eating, have difficulty concentrating and making decisions, and withdraw from participating in activities that once provided joy and fulfillment. Increased physical problems, distress and risk of post-traumatic stress disorder also may happen." (source)
Fear of Recurrence & Insomnia
"The complex relationship between the FCR and insomnia is an important predictor for individuals navigating life after cancer treatment. Constant anxiety about the risk of cancer recurrence has been linked to the development of insomnia, a condition that disrupts sleep patterns, leading to a relationship of mutual influence. Worrying about the possibility of cancer recurrence can lead to more anxiety and ultimately interfere with a person’s ability to achieve restful sleep. On the other hand, altering sleep habits can increase the psychological distress associated with cancer recurrence." (source)
The Worry Can Last Years
"When treatment is over, this doesn't mean worries are over — not even among people in remission with no evidence of disease. After active treatment concludes, cancer survivors find themselves facing a new, unforeseen challenge: persistent fear and distress regarding their health and future. Survivors may continue to worry about disease recurrence for years after treatment ends. What's more, their worries often persist at levels equal to that experienced at the time of diagnosis. In fact, 30% to 70% of cancer survivors report moderate to high levels of fear of cancer recurrence, or FCR." (source)
"Although FCR is known to decrease over time, longitudinal studies have demonstrated that a certain level of fear remains in evidence, and a significant proportion of cancer survivors experience considerable FCR even approximately 10 years after cancer diagnosis." (source)
Fears May Not Go Away Without Help
"Managing fear of cancer recurrence (FCR) has been reported as one of the most important unmet needs. FCR is defined as “fear, worry, or concern relating to the possibility that cancer will come back or progress”. Low levels of FCR can be helpful by promoting treatment compliance and healthy lifestyle adaptations. However, at clinical levels, FCR can limit quality of life and daily functioning and require professional help. A 2019 Delphi study conceptualized four features as key characteristics of clinical FCR: "(a) high levels of preoccupation; (b) high levels of worry; (c) that are persistent; and (d) hypervigilance to bodily symptoms". It is important to address FCR, because FCR may also lead to increased healthcare costs and for most patients, it does not decrease over time without intervention." (source)
Coping & Managing Your Fears
"As the number of long-term cancer survivors continues to grow, oncologists and other providers who care for survivors have become more aware that their patients are at increased risk of anxiety and distress.
'Cancer survivors need the expertise of someone who knows cancer and understands what is ‘normal’ for a cancer survivor,' Dr. Syrjala said. It’s important to reassure survivors that some degree of anxiety and distress is very much normal and won’t increase their risk of dying or cause the cancer to come back, she added. 'And that’s a starting point for being able to say, ‘How do we then move on to help you manage [those feelings]?'
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. Support groups can also be helpful, but the logistics of organizing them can be challenging, Dr. Syrjala said. The growth of online support groups for survivors of diverse cancer types and treatments has made these resources accessible to far more people, she noted.
But surviving cancer can also lead to positive changes in a person’s life. The flip side of psychological distress in survivors is “post-traumatic growth,” Dr. Syrjala said. The cancer experience may help survivors develop new strategies to manage emotional challenges, deepen their relationships with family or friends, and help them realize they have the strength to get through difficult situations. Surviving cancer may also lead people to re-evaluate their priorities and appreciate life more fully." (source)
Finding Support
"Sharing your feelings with other people in similar circumstances may help. By joining a support group, you may ask peers how they deal with issues related to cancer. Participating in a support group may improve your quality of life and reduce anxiety and the risk of depression. If you desire professional help, psychological counseling may assist you with difficult feelings and examine your experience with cancer.
Some patients find a sense of control over their diagnosis by making healthier choices about diet, exercise and mental self-care. You may also take strength from your past experience with cancer, the knowledge you gained from it, and the relationships you formed with your care team.
Since excess weight has been linked to a higher risk of cancer, your care team will recommend that you follow a balanced, nutrient-rich diet and maintain a healthy weight. Avoid or limit red meat, refined grains, sugars and alcohol. Eat plenty of vegetables of various colors, and be sure to include beans and peas, which contain fiber and protein.
Ask your doctor what level of exercise is appropriate for you. Activity improves your physical condition—not only your strength and endurance—and it may also lower symptoms of pain, fatigue, nausea and diarrhea and decrease the risk of recurrence. It may better your mental outlook, lessen anxiety and raise your self-esteem." (source)
