For young survivors who do retain their fertility, there will be other issues to confront: “We found out that I am pregnant. I want this baby. I don't want to have to give it up to take chemo if I have a recurrence. I want it so badly that I fear this is when the bad test results [indicating recurrence] will come.” The physiological aspects of survivorship weigh heavily on young survivors' ability to allow themselves to contemplate, to plan, or even to hope for their future.
Among the physical after-effects, fatigue is nearly universal and can be particularly distressing.[8–10] “When people look at me they see a young woman who should be bursting with energy. Being so weak is the hardest thing. Everyone in the group could relate.” Many young adults are not aware of fatigue as a potential consequence of treatment and may misinterpret this post-treatment symptom as a sign of failure to recover or as a recurrence: “It was reassuring to hear people talk about fatigue. I'm unnerved by how tired I still am even now, almost 2 years later.”
They may interpret this physiological symptom from a psychological standpoint as a lack of motivation or depression. Further, many hold themselves responsible for it, adding guilt and frustration to their healing process: “I don't know why I can't seem to get myself going; there must be something wrong with me.” Most are relieved to learn that fatigue is a common problem and that there are techniques for coping.
Most young survivors have not previously dealt with serious health challenges. Nor have they focused in any significant way on general health maintenance. Cancer is a crash course. They assume responsibility for managing complicated post-treatment medical care with little or no preparation, background, or experience. They find themselves facing an unexpected learning curve at a time when they need to focus on the developmental tasks of young adulthood—identity building, family separation, social networking, establishing intimate relationships, career development, and education.
Thus, the ending of treatment and/or changes in follow-up schedules can become particularly difficult transitional periods, fraught with new concerns and insecurities: “Similar to the anxiety involved in ending treatment is the anxiety involved in reducing the frequency of follow-up appointments and scans. Sometimes I don't want to go, [but] sometimes I feel as though I'm only okay when I have a report stating as much.” Many young adult survivors are unprepared, and often unwilling, to grapple with the complexity and time involved in mastering information related to the varied late-effects of treatment. As a result, they are vulnerable to poor or inconsistent follow-up care.[12,13]