National Proactive Surveillance Network goes live in Baltimore and Los Angeles

As reported previously, in May 2010, the Prostate Cancer Foundation, in association with Johns Hopkins and the Cedars-Sinai Medical Center announced their intention to develop a national initiative to track the management of men with prostate cancer using active monitoring  (“active surveillance”) as opposed to invasive treatment.

The National Proactive Surveillance Network (NPSN) went live earlier today, with a web site that provides full details about this initiative, including the HIPAA-compliant myConnect system that will allow individual patients and their physicians to track data related to their care. A media release from the Prostate Cancer Foundation provides additional information about the NPSN.

At this time The “New” Prostate Cancer InfoLink has not had the opportunity to review all of the information and resources available on this web site. However, our basic understanding is that:

  • Patients should normally meet strict eligibility criteria (the Johns Hopkins criteria) for enrollment into the program; however …
  • Patients may also be enrolled into the program if
    • They have clinical stage T1c prostate cancer but do not wish to undergo active, invasive treatment (e.g., surgery or radiation therapy).
    • They have other illness sufficiently severe to preclude aggressive treatment, regardless of age, cancer stage, and grade.

We encourage all those who are interested in the potential of active monitoring (also known as “active surveillance” or “expectant management”) to explore this web site and discuss this initiative with their own physicians.

What we were not expecting, however, is that the initiative appears to be limited to patients enrolled at either Johns Hopkins Medical Center in Baltimore or the Cedars-Sinai Medical Center in Los Angeles. We had originally (and perhaps mistakenly) got the idea that it would be possible for men to enroll in this program regardless of where they lived and were being managed. Clearly most men eligible for active monitoring are not going to be able to make trips to Los Angeles or Baltimore for regular monitoring at least twice a year, and so the scope of this program is apparently going to be considerably more limited than one might have hoped. Indeed, unless it is going to be expanded to allow for enrollment through other centers, one might argue that calling this program a “national” initiative is not exactly justified. The original Johns Hopkins active monitoring initiative has enrolled just over 1,000 men since it was started in 1995, thus suggesting that the annual enrollment goals of the current two-center initiative may have to be modest.

The other factor that may be discouraging to some readers is that participation in the program will “Periodically — usually once a year until the age of 75 years” require patients to have “a surveillance prostate biopsy.” In other words, patients enrolling in the program with low-risk disease at age 60 may need to have as many as 15 annual biopsies during their participation in the program, as opposed to the possibility of less frequent biopsies and annual MRIs as a different method of monitoring for disease progression. Some men will certainly be disincented from participation in a program that requires this type of annual biopsy, and there may well be justifiable functional concerns related to having something like 180 biopsy cores taken over a 15-year period.

5 Responses

  1. I have been under active surveillance for 7 years. Would like to hear as much about this as possible.

  2. Multiparametric MRI (3 T, read by experienced radiologists) is an acceptable adjunct to repeat biopsies in many Gleason 3 + 3 pathology prostate cancers along with serial PSA results. Repeat biopsies can miss tumor cores while negative (or no increase in T2 signal findings from initial MRI) may indicate no reason for repeat biopsies. At least repeat a repeat multiparametric MRI might be able to reduce the number of repeat biopsies and can enhance sampling accuracy of future biopsies.

  3. I agree with Michael Jones. Will the urologists approve this alternative?

  4. According to the current NPSN protocol, the use of any form of MRI monitoring does not meet the NPSN standard. Whether that may be changed over time is up to the leadership of the NPSN.

  5. How I wish this had been established in 1996 when I was diagnosed and came to my own conclusion that, as Brady Urological Institute, Johns Hopkins Medicine now says:

    “It is estimated that between 30 and 50 percent of men diagnosed with prostate cancer today won’t experience any effects from the disease.”

    It seemed likely that I might be in this group, so I chose not to have early invasive treatment. … But that was a lonely path to walk.

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