Cancer survivor

A cancer survivor is an individual who is considered a cancer survivor from the time of cancer diagnosis, through the balance of his or her life. About 11 million Americans alive today—one in 30 people–are either currently undergoing treatment for cancer or have done so in the past. Currently nearly 65% of adults diagnosed with cancer in the developed world are expected to live at least five years after the cancer is discovered.

Many cancer survivors describe the process of living with and beating cancer as a life-changing experience. It is not uncommon for survivors to use the experience as opportunities for creative self-transformation into a "better person" or as motivation to meet goals of great personal importance, such as climbing a mountain or reconciling with an estranged family member.

Definitions and alternatives

The National Coalition for Cancer Survivorship (NCCS) pioneered the definition of survivor as from the time of diagnosis and for the balance of life, a person diagnosed with cancer is a survivor. This expansive definition of "survivor" includes people who are dying from untreatable cancer. NCCS later expanded the definition of survivor even further to include family, friends and voluntary caregivers who are affected by the diagnosis in any way.

The National Cancer Institute's Office of Cancer Survivorship uses a variant of this expanded definition while Macmillan Cancer Support defines a cancer survivor as someone who is "living with or beyond cancer", namely someone who:

• has completed initial cancer management and has no apparent evidence of active disease;
• is living with progressive disease and may be receiving cancer treatment, but is not in the terminal phases of illness; or
• has had cancer in the past.

The word survivor is a loaded term. Within the breast cancer culture, survivorship is conferred upon women who are perceived as having suffered emotional or physical trauma, even if their breast cancer was a non-life-threatening pre-cancerous condition like LCIS or DCIS. The term tends to erase and degrade people who are dying of incurable cancer. This idea of survivorship emphasizes and values longevity of life after diagnosis, while overlooking issues of quality of life.

Some people reject the term survivor as being a narrow conceptualization of highly variable human experiences. Alternatives include alivers and thrivers, which put emphasis on living as well as possible, despite limitations and disability. A third term, the diers, is used by some terminally ill patients who reject the claim that dying is part of survivorship or should be covered up with inappropriately optimistic language.

The term previvor has been used to describe unaffected carriers, those who have not diagnosed with cancer, but have a survived the predisposition, or higher risk, of cancer due to certain genetic mutations. As such, this is the first generation in human history who, armed with information about a predisposition to a cancer after opting in to DNA testing, can make informed choices prior to cancer diagnosis. The typical previvor has tested positive for a BRCA mutation and learned that she is at high risk for developing breast cancer and ovarian cancer, and is attempting to manage that risk through a combination of increased surveillance through mammograms, breast MRIs, pelvic ultrasounds, oophorectomy, bilateral mastectomy, and other medical procedures. There has been much controversy over the term previvor, due to the fact that the name compares these healthy women to people have actually been diagnosed with invasive cancer.

Needs of cancer survivors

People who have finished cancer treatment often have psychological and physical medical challenges. These effects can vary from person to person, change over time, and range in intensity from mild and intermittent to fully disabling.

Psychosocial

If the treatment is lengthy and disruptive, many patients experience some difficulty in returning to normal daily life. The energy needed to cope with a rigorous treatment program may have caused them to disconnect from previous daily patterns, such as working, normal self-care, and housekeeping. A small number of patients become dependent on the attention and sympathy that they received during their treatment and feel neglected when life returns to normal.

Some survivors, even if the cancer has been permanently cured, struggle emotionally from the trauma of having experienced a life-threatening disease. Cancer survivors suffer from more psychological distress than those who have never experienced cancer (5.6% compared to 3.0%) Serious psychosocial distress was seen 40% more among cancer survivors of 5 years or more than in those who have never had cancer. About 10% develop major depressive disorder; others experience an adjustment disorder. In young adult cancer survivors, one small study found that 20% of participants met the full clinical diagnosis of post-traumatic stress disorder (PTSD), and 45% to 95% displayed at least one symptom of PTSD. Survivors of adult cancer are at an increased risk of suicidal ideology (having thoughts about suicide), while as many as 13% of childhood cancer survivors experience suicidal ideology. Issues of pain and physical ailments have been hypothesized as major contributing factors in cancer survivors experiencing this suicidal ideology.

Other patients have to adjust to the idea that they will never be cured, or that the cancer could return without warning. Many patients are anxious that any minor symptom indicates that the cancer has returned, with as many as 9 in 10 patients fearful that their cancer will recur.

The cultural ideal of a survivor may add to individual patients' distress if the patient is unable or unwilling to live up to the ideal. The ideal survivor is bravely committed to mainstream medicine and optimistic or even certain of a physical cure. He or she is open about diagnosis and treatment and becomes an educated, empowered medical consumer. The ideal survivor, like a superwoman who simultaneously manages her home, family, and career, struggles valiantly to prevent cancer from affecting loved ones by appearing, behaving, and working as much as possible. Once the immediate crisis is past, the person may feel strongly pressured to donate time, money, and energy to cancer-related organizations. Above all, the ideal survivor does not die of cancer. People who publicly conform to this ideal are given social status and respect.

Physical

In terms of medical challenges, some survivors experience cancer-related fatigue, may have long-term side effects from cancer and its treatment, and may need extensive rehabilitation for mobility and function if aggressive surgery was required to remove the cancer. They may experience temporary or persistent chemo brain. Some young survivors lose their ability to have children.

Cancer survivors frequently need medical monitoring, and some treatments for unrelated diseases in the future may be contraindicated. For example, a patient who has had a significant amount of radiation therapy may not be a good candidate for more radiation treatments in the future. To assist with these needs, "survivor care plans" have been promoted. These are personalized documents that describe the person's diagnosis and treatment in detail, list common known side effects, and specifically outline the steps that the survivor should take in the future, ranging from maintaining a healthy weight to receiving specific medical tests on a stated schedule.

Survivors of childhood cancer have a life expectancy up to 28% shorter than people in the general population. Therefore, there is a need to closely monitor these patients for much longer than usual. The Children's Oncology Group recommends that monitoring should include periodic follow up and screening by a clinician familiar with these patients' risks. Improving these patients' longevity requires recognition and treatment of illnesses associated with late effects in the decades after therapy for childhood cancer. For example, survivors of childhood cancer may have more difficulty than typical with breastfeeding and require more support to undertake this health-promoting activity. Others experience various forms of heart disease. One challenge to achieving this goal is that childhood cancer survivors are both very adaptable and accustomed to denying difficulties; as a result, they tend to minimize their symptoms. Therefore, internists may not give them all the attention they need and thus the actual help they may need. Symptom management, health promotion, specific attention to psychosocial needs, and surveillance for recurrence and specific late effects of treatment are helpful.

Adolescent and Young Adult Survivors

Adolescent and young adult (AYA) survivors, often defined as being between the ages of 15-39, have seen advancements in technology and modern medicine causing a dramatic increase in the number of AYA survivors. Prior to 1970, being diagnosed with cancer during childhood was considered a universally fatal disease. From 1995 to 2000, however, the 5-year survival rate for children diagnosed with cancer was 80%. Significant progress has been built in the last 25 years as there are now approximately 270,000 survivors of pediatric cancer in the U.S., which translates to approximately 1 in every 640 young young adults being a survivor of childhood cancer. However, as studies have shown, as patient needs increase, the likelihood of having an unmet need also increases. For the AYA population, 2 out of 3 childhood cancer survivors will develop 1 complication due to the therapy they received and 1 out of 3 will develop serious or life-threatening complications, meaning they will most likely need treatment and follow-up care.

A Unique Population

An AYA survivor, faces a variety of issues that are unique to their particular age group which differentiate their survivor population from the adult survivor population. Factors that impact educational attainment, employment, marriage and intimacy, fertility, and other life values differ in the emerging young adult compared with the older adult. Data show that AYA survivors have a much greater risk of getting a second primary malignancy as a side effect of the treatment for their original diagnosis. It is believed that AYAs have a much higher relative risk of developing a second primary cancer because the intensity of the treatment for their original diagnosis, typically including any combination of chemotherapy, surgery, and radiation, is much higher than the level of intensity given to patients over 40. Furthermore, since AYA survivors are diagnosed and treated at such a young age, their length of time being a survivor is much longer than their adult counterparts, making it more likely they will face a second primary cancer in their lifetime.

Barriers to Quality Long-Term Follow-Up Care

There is a steady decline of primary care physicians-general practitioners, general internal medicine practitioners, family physicians, physician assistants, nurse practitioners, nurses, and care coordinators-entering the medical workforce as only 8% of the nation's medical school graduates go into family medicine, making it a challenge for survivors to find quality long-term follow-up care. Childhood cancer survivors, in particular, need comprehensive long-term follow-up care to thrive. One important way this can be accomplished is through continuous follow-up care with a primary care physician that is trained to identify possible late effects from previous treatments and therapies.

The impending void of primary care physicians accentuates the importance for AYA survivors to have access to their records and medical history in order to make sure they receive a comprehensive check-up of possible late effects, from any physician they may see. The Children’s Oncology Group (COG) has designed a set of survivorship guidelines that hope to aid both health care professionals and survivors themselves, in both the intricacies and basics of long-term follow-up care. The COG has guidelines for how a patient should put together their own “treatment summary”, so they can have their treatment history with them when they visit any health care provider. The COG suggests that a survivor include the following in his/her treatment summary:

• Name of disease, date of diagnosis, stage of disease, contact information of the clinics/hospitals where you received your care
• Names and doses of the chemotherapy and radiation you have received and the area of the body that was radiated
• Names and dates of any surgeries you have had
• If you have received a transplant, the type of transplant and where it was received and whether you developed any chronic Graft-versus-Host Disease
• Names and dates of any significant complications and treatment received for those complications

With the treatment summary, experts hope that survivors will be better equipped to face the significant burden of maintaining quality follow-up care long after their original treatment. This is especially important for the AYA population, in particular, because they are typically facing major social changes regarding their relationship status, employment or education status, their insurance coverage, and even their place of residence, etc. Typically, most of these factors are pretty constant for the adult population and if they experience any changes, it would occur in one or two aspects of their life. However, with the AYA population, the period of time until they are 40 is when they are going to, for the majority of the population, undergo the most change. This reality underscores the importance of a smooth transition from child-centered to adult-focused health care services through which they are consistently managed.

Available Resources for AYA Survivors

Survivorship centers have begun to form around the country connected to major hospitals and cancer centers. These particular centers, funded by the LIVESTRONG foundation, have made tremendous strides in providing much needed care and support to the AYA population. Their stated mission is to "provide essential direct survivorship services, and increase the effectiveness of survivorship care through research, the development of new interventions and sharing of best practices". LIVESTRONG Survivorship Center of Excellence Network members are awarded, through an application process, up to $250,000 per year for five years to support programs designed to carry out this mission. Currently there are eight LIVESTRONG Survivorship Centers of Excellence including:

• Living Well After Cancer Program at the Abramson Cancer Center, University of Pennsylvania
• Lance Armstrong Foundation Adult Survivorship Clinic at the Dana-Farber Cancer Institute, Harvard University
• Survivorship Program at the Fred Hutchinson Cancer Research Center, Seattle, WA
• Memorial Sloan-Kettering Cancer Center Survivorship Program, NY
• The Ohio State University Comprehensive Cancer Center-James Cancer Hospital and Solove Research Institute
• Survivorship Program at UCLA's Jonsson Comprehensive Cancer Center
• Survivorship Program at the University of Colorado Cancer Center
• Carolina Well Survivorship Program at the University of North Carolina at Chapel Hill, Lineberger Comprehensive Cancer Center

Notable cancer survivors

See Category:Cancer survivors

See also

• Psycho-oncology

External links

• Information about survivorship at Cancer.Net by the American Society of Clinical Oncology
• National Coalition for Cancer Survivorship
• Cancer survivorship website, NHS Improvement
• Welcome to Cancerland, an essay criticizing the commercialization of survivorship by journalist and breast cancer survivor Barbara Ehrenreich
• Advice for survivors on disclosing their cancer diagnosis from Survivorship A-Z
• Words are inadequate by Dana Jennings, about the language of survivorship, victimhood, and battling cancer