Long-term quality of life and survivorship issues for prostate cancer patients

There are very few really good data available on the long-term follow-up of men diagnosed and treated for prostate cancer outside a select group of specialized prostate cancer centers (with the notable exception of the data collected as part of the CaPSURE initiative).

A new article by Darwish-Yassine et al. in the Journal of Cancer Survivorship has now added data from long-term follow-up of nearly 2,500 prostate cancer patients through a patient-centered survey of survivors in the Michigan Cancer Registry.

The patients asked to participate in this survey had all been diagnosed and received primary treatment of some type between 1985 and 2004, and were still living as of December 31, 2005. The research team sought to identify rates of side effects of treatment, to evaluate survivors’ access to preventive care services post-prostate cancer treatment, and to assess the informational needs of these survivors. The researchers also made considerable effort to assure “adequate inclusion of survivors based upon race and ethnicity, urban versus rural location, and number of years since diagnosis of prostate cancer.”

The major findings of the study are as follows:

  • The total number of evaluable responses to the survey was 2,499.
  • The average (median) time from prostate cancer diagnosis to  survey response was 9 years.
  • 80 percent of the study population was diagnosed with early stage prostate cancer.
  • 88.1 percent of the study population reported having had a follow-up PSA test since their original diagnosis.
    • Of this subset of patients, 93 percent reported having had PSA tests at least once a year since their diagnosis.
  • 82.6 percent of the study population reported that “a healthcare provider” had given them information about prostate cancer.
    • Of this subset of patients, 86.4 percent had this information provided by a urologist, 45.4 percent by a primary care physician, and 29.2 percent by an oncologist.
    • Also of this subset of patients, 59.2 percent stated that the primary source of their information was “a healthcare provider”.
  • Many survivors had reported significant problems in the 4 weeks prior to survey (but these data are not quantified in the abstract of thes paper).

The authors conclude that:

Persistent symptoms subsequent to prostate cancer treatment suggest a gap in symptom management. Future research should support long-term studies of active surveillance versus active treatment outcomes to understand the feasibility of minimizing the burden of long-term physical symptoms arising from prostate cancer treatment. Clinicians must assess post-treatment distress long after treatment has ended to identify when supportive care is needed. More informational resources should be allocated to prostate cancer survivors to ensure that they are well-educated about their prognosis.

The “New” Prostate Cancer InfoLink suspects that the full text of this paper may contain a good deal of detailed information about the long-term outcomes of these 2,500 patients, and we intend to see if we can obtain a copy of the full text of this paper for further assessment. However, we should also point out that a significant number of the men in this study have to have been diagnosed and treated in the 1985 to 1995 time frame, when the quality of both surgical and radiotherapeutic treatments for prostate cancer was lower than it is today, and so some caution is necessary in making assumptions about the applicability of data from this study to men seeking first-line treatment for prostate cancer today.

On the other hand, we do hope that patients enrolled in studies like the ProtecT study in the UK — in which the outcomes of men managed under active surveillance are being compared to those of men receiving first-line treatment with surgery or radiation therapy — will be monitored for many years to come, so that we get a clear picture of the long-term impacts of these different management strategies.

2 Responses

  1. Having watched my father suffer for years from the debilitating effects of old-fashioned radiation for prostate cancer, and having had my share of effects from surgery, radiation, and androgen deprivation, I have developed sympathy for the men treated for prostate cancer and some disrespect for physicians who fail to recognize the long-term effects of their quest to “cure cancer.”

    I am always surprised by the stoicism of the men who have survived treatment for prostate cancer. For better or worse, I do not have that virtue. Thank you for this post.

  2. I have survived Stage IV prostate cancer for 14 years … have gone from one treatment to the next trying to stay one step ahead … currently being treated with Xofigo for bone mets which developed 7 years ago.

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