Breast Cancer Lighthouse is designed to provide information to women (and their families) who have been diagnosed as having breast cancer. The CD presents the information in two ways: from the point of view of the diagnosis and its treatment options, and from the point of view of survivors. Each diagnosis presents excerpts from the survivors’ stories at each step through treatment. Additionally, each survivor’s story is presented as an uninterrupted monologue in her own voice. The viewer creates a unique path to navigate through the wealth of information presented; and graphics allow convenient jumps throughout. Minimum system requirements include (for Windows users) a 486‐33 MHZ processor, 8 MB RAM, 80 MB hard disk, VGA display, sound card and mouse. In addition, the program also requires installation of QuickTime for Windows (ver. 2.1 is included), which requires 6 MB of disk space.
Installation on my system was a bit confusing, as the program indicated that QuickTime was not installed, even though it was, despite which it ran nicely! (Technical support, reasonably available by phone once I learned whom to contact, said that this problem was uncommon.) After solving the initial puzzle, all was smooth sailing.
The lighthouse is a good metaphor. As a woman interested in this topic both professionally (as a medical physicist) and personally (as a breast cancer survivor), illumination of possible ways to navigate the potentially treacherous journey is a fine concept. The graphics are reasonably clear, and the sound is usually understandable. I had a bit of uncertainty at the beginning about the selection of islands for my journey, but the choices were obvious from the graphics. Topics were presented in an organized manner and were well‐illustrated.
I initially chose the path of medical information. For each diagnosis (degree of cancer invasiveness), typical treatment options were presented, with both narration and text. I appreciated this redundancy: it is suitable for different preferences and is friendlier for visually or auditorially impaired users. After these options, excerpts from the survivors’ narrations were included as choices. These excerpts, of necessity taken out of context, were of varied sound quality (loudness, clarity), and sometimes the context of the speaker was not obvious to the listener. This problem disappeared in listening to the whole story in the other path.
After exhausting all the diagnostic/treatment paths, I then listened to the survivors. Fourteen women presented their stories; and some of their partners or spouses provided additional information. (No transcripts were included.) These women were of varied ethnicities, socioeconomic classifications and educational backgrounds; and I was more attuned to some of their voices and choices of language than others. This feature indicates that there are choices for families of many backgrounds. However, with 14 women, there are not many choices of stories, if the user is looking for women with particular diagnoses and treatments in addition to particular backgrounds. And a man with a breast cancer diagnosis does not have a role model here.
As a medical scientist, my review of the content is exacting. The majority of the information presented is useful, appropriate and timely. Still, although the introduction clearly states that every woman must choose her own path, the narrative as well as survivors’ stories sometimes indicate certain information to be the complete story, when the information presented is not quite so for everybody, everywhere. I believe that this issue relates to differences in procedures and policies among hospitals and regions of the country and the world. For example, it is stated that one must have recurrent disease in order to be eligible for a bone marrow transplant, which was not the protocol for me. And, unfortunately, not all facilities provide daily emotional support. All technical terms appear to be defined ‐ although, depending on the path selected, the definition may not be with the first use. Certain diagnostic tools are not included ‐ for example, stereotactic biopsy, common in many centers. And sometimes the information is out of date: a federal requirement for facilities offering mammography to be certified mitigates the need for American College of Radiology accreditation as a requirement.
As a breast cancer survivor, my review is more benevolent. Here, I have the opportunity to attend breast cancer support groups. As the CD indicates, each of us has a unique experience, and hearing it stated in personal voice is important to fellow travelers. The CD does not substitute for a support group, in that it does not allow for the user’s story to be heard and validated, which, I believe, is important to survival. But it certainly is better than not having a group at all.
The initial shock of cancer diagnosis and needing to decide what path to select while in that state is obviously difficult. Available options for information include some excellent books, authored by physicians, survivors, or physician‐survivors; and informative pamphlets from the National Cancer Institute and the American Cancer Society; as well as individuals talking to each other, maybe in support groups. In my case, even though I was reasonably informed at the time of diagnosis, I still had difficulty in my choice ‐ and I found it difficult to focus on written material at that time. This CD provides a useful, affordable option, as long as the user remembers that qualifications apply to her unique situation ‐ and provided she has the hardware. I also recommend that libraries and local American Cancer Society offices provide this CD and necessary hardware at their facilities for women and their families.
