National Cancer Institute
Cancer Survivorship Research - Cancer Control and Population Sciences

Cancer Survivorship: Pathways to Health After Treatment - June 16-18, 2004

Cancer Survivorship: Pathways to Health After Treatment:
Survivor-Researcher Mentor Program

Cancer Survivorship: Pathways to Health After Treatment: Survivor-Researcher Mentor Program

Late Effects After Cancer

“Cancer Survivorship, Pathways to Health After Treatment: Late Psychosocial Effects of Cancer, Treatment and Interventions to Address them” a personal reflection by Jack David Marcus

Board Member & Advocate, US TOO New York Prostate Cancer
Support & Educational Group
www.ustoonewyork.org

The views and opinions expressed do not necessarily state or reflect those of the United States Government and they may not be used for advertising or product endorsement purposes.
I am on an all too familiar personal and first name basis with cancer. I strongly believe that I am currently cancer free, however there is not a day that goes by that I don’t think about my own cancer story and/or those of others with various cancers. This essay is based upon my experiences as a: multiple cancer survivor; caregiver for my two best friends; urban public hospital social worker and administrator; running a small home-IV-therapy company; cancer patient advocate and board member of US TOO New York Prostate Cancer Survivor’s Support Group; and an NCI CARRA cancer patient advocate.

Cancer fighters/survivors like any other population or grouping, don’t all feel and react the same way. However, the common denominator of our nearly ten million survivors (some 3.5% of United States population), perhaps most of who were confronted with potentially life threatening diseases, does place us into a rather unique category.

In addition to the usual and customary peaks and valleys of life, cancer fighters/survivors face a variety of unique and potentially cataclysmic psychosocial events. These immediate and late term psychosocial events occur more often than not in our cancer treatment, healing, and physical and spiritual recovery.

Therefore, I consider psychosocial manifestations a very real, adverse side effect of the cancer fighter/survivor care continuum process which must be identified, addressed and resolved as much as any other significant adverse side effect of cancer treatment.

Some of these psychosocial events may surface at or about the time of the cancer diagnosis; some effects may only manifest or become evident later on. Most cancer fighters/survivors' lives, psychosocially, will be forever altered and often radically changed subsequent to cancer diagnosis, initiation of and cessation of treatment, recovery, healing, and through to the balance of their lives.

It is crucial for the entire health care treatment and support team to be ready to observe, process, and treat cancer fighters/survivors multiple complicated feelings. These feelings may include: crushing and near paralyzing anxiety, uncertainty, frustration, depression, sadness, decision making including choice of treatment, anger and fears about efficacy and side effects of treatment, concern about the health care treatment team, anxiety and stress about interpersonal and sexual relationships, fatigue, sleep deprivation, altered body image, guilt, concern about the health and wellbeing of family members and care givers, spiritual and faith challenges, economic and employment challenges, under-health-insured, no health insurance, logistical nightmares as to getting to and from treatment, childcare, consequential addictive disorders such as obesity, smoking, and alcohol, fears about recurrence and second cancers, fearful when active treatment is completed, anxiety about physical and emotional pain, survival, and ultimate post-treatment quality-of-life.

Thus, the health care treatment team, cancer fighters/ survivors and caregivers/supporters need to acknowledge and recognize that psychosocial effects are more common than not, at all stages in the diagnosis, treatment, recovery, healing and cure continuum. I advocate that all members of the health care delivery team receive ongoing psychosocial training and in-service education. It is essential that multiple psychosocial services be discussed and offered in a psychologically sensitive manner. Cancer fighters/survivors should be encouraged to accept their new panoply of feelings and to minimize worrying that they are “losing it” because of their emerging feelings associated with their cancer status.

At the same time as the cancer diagnosis is being communicated to cancer fighters/survivors, clinicians should express that some possible psychosocial events, to a greater or lesser degree, may occur as a side effect and consequence of cancer. The physician, social worker and mental health staff can play a critical role at this early as well as all stages of cancer care. Mental health workers should be available for individual consultation as well as to run groups.

Clinicians should monitor the level of stress and depression that cancer fighters/survivors are experiencing and be ready and willing to make expeditious referrals and treatment plans. Hopefully they will recognize, prevent and interrupt adverse psychosocial effects.

Clinicians should provide cancer specific support group information to cancer fighters/survivors. Cancer fighters/survivors should be encouraged to think about participating in them, from the moment of diagnosis and before treatment begins, as well as during and post treatment. There are various mentor and peer support models that may be helpful.

Cancer fighters/survivors should be educated about Internet resources from the National Cancer Institute and large national cancer-specific organizations. With as much reliable information as possible, cancer survivors may be able to further empower themselves, function proactively, and strengthen their self-care; and hopefully minimize adverse psychosocial effects latter on in the cancer cure continuum.

Complementary approaches and stress management tools, techniques and education early on should be provided to cancer fighters/survivors. The use of these resources may help to calm both the body and the mind and thus may be able to help lessen both acute and later term adverse psychosocial effects. These adjunctive methods to mainstream care may include: expressive movement; dance therapy; visual imaging; yoga; music and sound therapy; biofeedback; physical fitness; relaxation, touch and massage therapies; nutrition; acupuncture; and mindful meditation. Faith based programs, healing circles and services and spiritual enlightenment experiences should also be offered.

We must research the impact of sudden illness life-style changes, employment, sedentary activities,; energy imbalances, and the possibility of psychosocial disorders occurring at the time of and subsequent to the cancer diagnosis being made. We need to research and develop psychosocial needs profiles, advance psychosocial screening technologies and behavioral risk factors models, and behavioral modifications in order to help cancer fighters/survivors address, deal with, and resolve their cancer related psychosocial trauma.

Last Updated: June 29, 2012

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