The unmet need for prostate cancer survivorship planning


A recent article in Cancer Nursing has reminded us (once again) just how poorly we deal with the concept of survivorship planning for patients diagnosed with prostate cancer.Our attention was drawn to the article because of the opening words of its title — “Hit by waves.”

The article (by Ervik et al.) comes from a Norweigian research team, was focused on men who needed hormonal therapy for the management of their condition, but the points they make are all too well known:

  • Prostate cancer and its treatments cause physical as well as psychosocial problems.
  • The initial diagnosis often comes as a shock to the patient and his family, with different aspects of the illness being revealed over time.
  • Limited time to meet with health care providers contributes to patient’s feelings that they are left alone to deal with their condition, and have difficulty getting information and help.
  • The potential for (and actual) sexual and urinary problems are seen as a threat to the patient’s manhood.
  • Spouses commonly have to provide the closest (and perhaps the only) everyday support.
  • Many patients find themselves living in a state of “constant readiness” for the next piece of bad news, without clear guidance about where to get good help.

In their conclusions, the authors write that, “The results confirm existing knowledge of patient’s experiences in living with prostate cancer regarding the initial shock perceived by the patients, the bodily alterations, and the important role of their spouses. Nurses, as well as general practitioners, must play a more active role in follow-up to ensure that the men and their spouses receive better help and support.”

Other sectors of the cancer community have long emphasized the importance of developing long-term survivorship plans of cancer patients, which need to be built into the management process from the time of initial diagnosis, and considerable efforts have been made to ensure that this happens for diseases like breast and colon cancer. However, the same degree of survivorship polanning is rare for prostate cancer. It is high time that the prostate cancer community started to really focus on this unmet need, which is closely associated with the fact that man often are not well-informed about all of the possible consequences of the various types of even first-line treatment for their condition.

2 Responses

  1. Aloha,

    This study is sadly, so, so true in my case. Time spend with prostate cancer patients is very little compared to the daily emotional need for survival. We are dreading the wait for the next bad news in our lives. My HMO provided no support and only my constant complaining has produced some help. Medical staff do not react well to complainers. My wife is my support group. When I hurt, she hurts.

    Joe

  2. Aloha, Joe! Please recognize that we, your brothers in this dubious prostate cancer fraternity, are also part of your “support group.” Support lists like this “New” Prostate Cancer InfoLink, the several prostatepointers support lists, and the advancedprostatecancer@yahoo.com support list provide patients and their caregivers access to many other prostate cancer patients, caregivers, advocates, and mentors who are ready and willing to share experiences and offer supportive reference material to better understand our cancer and its treatment.

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