For survivors generally, changes in physical appearance and body image are major issues that can create difficulties in dating and having intimate relationships, and they are felt all the more keenly by this younger population. The impact of treatment on the young adult survivor’s ability to have children is particularly important not only in terms of how it affects the survivor’s self-image, but also as a relationship issue: how to tell a prospective mate and how this may affect the relationship with a significant other. Being different and fearing rejection, the young adult survivor is left with a sense of hesitancy about the future.
Besides the effect on social relationships, time taken away by treatment for cancer also can alter the work and career trajectories of young adults. Even when there are no cognitive effects or other disabilities that may have disrupted their education or learning skills, or no apparent after-effects from their cancer, their relatively limited work experience puts them at further disadvantage when looking for a new job. Those who are already employed may experience the previously described “job lock,” remaining in an undesired or unsuitable position because of the risk of losing their health benefits. This contributes to the young adult survivor’s relative lack of experience, as it discourages him or her from trying out different jobs, which normally allows one to add depth to a resume.
Maureen is 39 years old, diagnosed with Stage III ovarian cancer after becoming pregnant. Successfully treated with chemotherapy and surgical debulking, she is NED (no evidence of disease) status and caring for her daughter, who is now 4 years old. After her treatment, her employer was initially supportive, but she was fired with 2 weeks’ pay when assigned a new supervisor. Her mother-in-law suffered a stroke 2 years ago, and she has had to play an instrumental role in helping her at home as she undergoes her rehabilitation. She worries that the stress of all her responsibilities will undermine her ability to remain cancer-free, but she and her husband have little time to talk about other things besides staying financially afloat on his one paycheck, let alone re-establishing the physical intimacy of their relationship prior to her diagnosis.
Forty percent of all cancers are diagnosed in people aged 30 to 59 years. In contrast to the paucity of data on young adults, survivorship research on adults from the age of 40 to 64 years made up 70% of the entire National Institutes of Health (NIH) survivorship research portfolio in FY 2002. The data for this group, largely from women with a history of breast cancer, serve as the basis for our understanding of the psychosocial issues for survivors across the life span, particularly in regard to financial and insurance issues, as well as body image and relationship issues.
Perhaps because this research focuses on women, there is the additional life-stage issue of being a member of the “sandwich generation” who, as in the case of Maureen, are caring not only for their own children but also an aging parent (either their own or their spouse’s). Just as is the case of women struggling to maintain their expected roles at home, working women with health problems (in the 55- to 64-year-old age group) have also been found to be at higher risk of losing employment-based insurance and being unable to obtain other coverage (especially given that they are too young to qualify for Medicare).
Middle adulthood has traditionally been seen as the “prime” years of adulthood. Developmentally, it is a time when one is juggling multiple adult roles (spouse, parent, employee, workplace manager, etc.) and responsibilities, particularly those involving supporting a family. A cancer diagnosis at this time challenges one’s ability to effectively multitask, which can undermine one’s self image as an adult in society, in the present and as projected for the future.
Other Adult Survivors
Ben is a 79-year-old man who lives with his wife in Florida; his prostate cancer was first diagnosed 7 years ago, at which time he underwent a prostatectomy. Although his subsequent incontinence gradually improved, he still has erectile dysfunction. He continues to drive himself to his routine follow-up appointments despite his deteriorating eyesight. Recently, his PSA (prostate-specific antigen) levels have been rising and he has been asked to come back to the medical center for more diagnostic tests. He is worried about the costs associated with these tests, and wonders about his ability to physically tolerate the treatment that will be needed if his cancer has returned. He does not share his concerns with his wife, who is coping with heart problems; nor does he share them with his adult children, because he feels they are busy with their own lives and in any event would not be in a position to provide much instrumental help, as they live out of state.
The majority of cancer survivors alive today—in fact, 61% of all cancer survivors—are more than 65 years of age. Yet older adults are another group for which research has not been commensurate with their statistical importance. Ageism accounts for some of this neglect, but there are other issues such as comorbid conditions which complicate treatment and inhibit research efforts with this population by excluding older adults from participating in clinical trials. Comorbidities also “obscure symptoms of recurrence or late effects of treatment” which may cause both patients and health care personnel “to attribute symptoms to an age-related condition,” delaying proper diagnosis and timely medical care.
Although most survivors diagnosed at 65 years of age or older will have the option of Medicare as a basic form of health insurance, for those forced into early retirement and to depend on a reduced, fixed income there are concerns about out-of-pocket costs associated with reduced coverage, increased premiums, and higher copayments. There is an increased likelihood of this latter survivor group delaying or entirely foregoing care they cannot afford.
Another practical issue that looms large for older survivors is lack of social support. Many are isolated, socially because they have outlived their significant others and peers, and geographically, either because their family and friends live far away, or they do not have the transportation resources to stay in regular contact with them. When there are family members who could help, they are often encumbered by their own home responsibilities (in the case of adult children, as per the description of the “sandwich generation” previously), and/or their own health issues (in the case of the spouse/partner of the same age cohort). Transportation to follow-up treatment can thus pose a “significant logistic and financial burden on those who have lost their physical and/or financial independence.”