The aging of the population, combined with better treatment modalities, has led to larger and larger numbers of Americans who are cancer survivors. There are now over 10,000,000 Americans living after having been diagnosed with (and in most cases treated for) cancer, and the number grows by more than a million every year. Most of these survivors live for many years. Thus, many issues of what cancer survivorship is and what life “after cancer” is like must be researched and addressed more effectively.
This research program is dedicated to better understanding of the cancer experience, from diagnosis to long-term survivorship. Issues as varied as treatment decision-making, sexuality, psychological changes, and identity are all important. It began as a questionnaire study of over 500 prostate cancer survivors from 1-8 years after diagnosis and now includes studies of younger cancer survivors of both sexes as well as being increasingly focused on trajectories of psychological growth and how those are interwoven with negative physical and psychological impacts. The results of the research are directly applicable to both the lives of cancer survivors and their families and to professionals working with and students aspiring to work with people dealing with cancer and other life-challenging illnesses.
Prostate Cancer Study
The Prostate Cancer Study was funded by the National Institute on Aging. What we found is that these men are generally doing very well psychologically; in fact, in some ways they are doing better than non-cancer populations of similar age. However, we also found negative changes and challenges, especially concerning the main side effects of prostate cancer treatment—urinary incontinence and erectile dysfunction. On the positive side, positive changes and benefits outweighed the negative for most of the men. We also found that age at diagnosis makes a large difference, with younger men more intensely affected in both positive and negative ways. Perhaps surprisingly, using coping strategies and attending support groups were by and large related to worse outcomes on psychological measures. It is likely that the need to continue to cope has its downside, but, like age, also has some positives (such as greater likelihood of making behavior changes that may result in better overall health, such as diet, exercise, and stress reduction).
Thus far, the group, spearheaded by Prof. Blank, has made 16 presentations at national conferences and has an article about the overall results in press at the journal Cancer. Other articles are being submitted.
Other aspects of research on the cancer experience fit under the umbrella of the Prostate Cancer Study, although some are not solely focused on prostate cancer. These ancillary projects include:
• Use of the Internet for Cancer Support. This set of studies looks at how prostate cancer and breast cancer Internet-based “support groups” are used. We are comparing breast cancer and prostate cancer groups and finding that there is greater variety of senders in the prostate cancer groups (more family members than just survivor himself) and more focus on more technical aspects and less on emotional in the prostate cancer groups. Thus far we have made two presentations and have an article in press at the journal, Computers in Human Behavior. Given that most persons now turn to Internet sources as soon as they have been diagnosed, it is critically important to have a better understanding of what they find when they go there and how they can use it to make decisions and to gain emotional support.
• Autobiographical Books. This facet of the research has used books written by cancer survivors to examine how they talk about matters of control and of social comparison (comparing their own condition to others’). We have made several presentations and have an article in press at Journal of Health Psychology.
• Gay men and Prostate Cancer. Most of the literature of prostate cancer quality of life and sexual impacts of treatment assume a normative model of a man with prostate cancer as an older man who is in a very long-term marital relationship with a woman. Thus, many sub-groups and their needs are ignored. This includes single heterosexual men, those in shorter-term marriages, and others. One such group is gay men. Dr. Blank has recently published a commentary in Journal of Clinical Oncology that is literally the first published article about the specific issues of gay men when dealing with prostate cancer. He and colleagues at UConn and a national team of researchers are now in the process of developing qualitative research with this difficult to research population. Besides the article in JCO this area has resulted in two national presentations, one to a scientific audience and one to a GLBT-aging audience.
• Prostate Cancer and Masculinity. The gay men research is related to a broader interest in how men with prostate cancer are affected in their sense of masculinity and their gender identity. This is particularly important, since at least half of all men treated for prostate cancer have erectile dysfunction as a result of treatment. Colleagues at UConn Family Studies and elsewhere are developing research in this area.
• Families and Partner Effects. Like some groups of prostate cancer survivors, family members have also been virtually ignored. A limited amount of evidence shows that, in fact, family members, especially spouses, may be more affected by the cancer experience than the survivor him or herself. Colleagues at UConn are teaming with Hartford Hospital researchers to develop studies of spouses/partners of survivors, focusing on both impacts of sexual function losses and broader feelings of relationship closeness.
Younger Cancer Survivors, Spirituality, and Growth
In collaboration with Prof. Crystal Park in the Department of Psychology, Dr. Blank and students are also researching younger cancer survivors. This research is funded by the Lance Armstrong Foundation. We have 250 survivors who were diagnosed between the ages of 18 and 50 approximately 1-3 years after diagnosis; we are currently obtaining a second wave of data one year later from these participants. The focus of this research is on the interplay of spirituality, sense of growth, health behavior change, and psychological outcomes. We have also identified both gender and age differences. Thus far, the preliminary data indicate significant changes in all these areas and interesting relationships of spirituality (but generally not religiosity) to coping and to outcomes. This group has so far presented or is scheduled to present six national presentations; articles are in process.