Active Surveillance Protocol

Based on my repeat biopsy, I have 1 or 2 cores that are Gleason 6 (3+3) less than 5% of the tissue. I hope to have Dr. Epstein's "second opinion" report by the end of the week. Assuming that Dr. Epstein confirms the Gleason (3+3), I will try active surveillance. The reason I say try is because, I need to override the psychological stress of knowing that I have low-grade cancer that is not going away. I will try meditation and thanks to "Tall Allen" Mindfulness Based Stress Reduction.

In a brief conversation with my urologist, he said his AS protocol is to repeat the PSA every 6 months and repeat the biopsy yearly. I can't have an MRI because of my defibrillator. I know that color doppler ultrasound is a diagnostic tool, however, I would have to travel to California for that. I am also aware that Transperinial Mapping Biopsy is also an option, however, I understand that's done under general anesthesia and I'm not too excited about having my prostate "cut" that many times.

I know that John Hopkins has a very structured AS program and I believe Sloan Kettering does as well. What additional tests would be done in a structured AS program besides repeat PSA tests and biopsy's? What is the advantage of being in a structured program? Finally, is there a certain percentage increase in PSA or PSA velocity that would require a change in the AS protocol?

Thanks for your help.

Mitch

Mitch,
JH is a good AS program from what I've heard. You should check them out.

Most times I hear the biopsy is every two years. Your defibrillator complicates the scans, as you know.

PSA velocity is less interesting these days as studies are showing it isn't that useful as a predictor.

Sadly I don't know much specific info on AS other than I wanted to do that but my risk profile suggested treatment was a better option.

The AS crew must be taking the day off. Hopefully they'll be around tomorrow with better answers.

Andrew

Tall Allen said...
Most programs have moved off of annual biopsies - it's mostly done very conditionally.

They can do the saturation biopsy with just a spinal block.

The advantage of a structured program is that you are a patient under ongoing care. When guys try to do it on their own, they don't have the same commitment to it from themselves or their doctors. Results from doing it on one's own aren't as good. Why would you not do it with a program?

As for the elements, PSAs can be semiannual or quarterly. Some do DREs, some don't. PSA kinetics are not a good indicator that it's time to seek treatment, although it can indicate a biopsy. The first f/u biopsy should be a thorough one. Depending on what that shows, the next biopsies may be TRUS, image-targeted or saturation. I like PHI better than PSA. I also think Proscar or Avodart may be a good idea. These are all elements to talk to your AS doctor about. Klotz now advocates not getting treatment until the Gleason score reaches 4+3, if it ever does. 55% have been on it 20 years or more so far in Canada.

- Allen

As far as a commitment, if I can handle it psychologically, I will certainly be committed to the AS program and I believe my doctor will be equally committed. With regard to participating in a structured program, I may consider it if I believe the level of care would be better than the care I'm getting from my doctor. Depending on the results from Dr. Epstein and my subsequent meeting with my doctor, I will decide if I want to have an AS consult with the doctor(s) at Sloan. I will certainly discuss this with my doctor. By the way, Dr. Reuter commented that today, the treatment of "atypical and suspicious" is likely not to differ from the treatment for Gleason 6 - at least at his institution.

Mitch says his doctor's AS protocol is continued PSA every 6 months and yearly biopsy. Why is that not a "structured" protocol? What exactly is considered to be "self-AS" in the cited studies?

Yeah, I see IF it is left entirely up to the patient and they need a staff to "keep after" a patient. To me, someone diagnosed with PCa, no matter how minor would not have to be reminded for heaven's sake . I would assume as well that the MD would look at records with oversight. A gross assumption? apparently for some MDs. The problem with your recommendation is there are guys who are going to assume they need to go 200, 300,500 miles to find a place with an "institutional protocol" to be truly on top of it, in which case compliance may be a problem or even embarking on the AS route. I agree, though, that it should not be left up to the patient unless they have their own protocol that they dictate to the MD to follow. :)

"would not have to be reminded for heaven's sake " - Yet that is not how it works in real life. Remember, that the PSAs can be done anywhere, and that imaginary patient of yours would have to travel for his mpMRI of other sophisticated biopsy anyway. I agree with Prat - we forget what we would rather not remember, but we also "write off" that there's really a problem after a few years of no evidence of progression. Often (30% of the time) there's no disease found on subsequent biopsies.And that rises to about 50% among those taking Avodart,. After a few years of nothing it becomes much easier to ignore.

- Allen

Thank you for your input. I've decided to go to Memorial Sloan Kettering Cancer Center for my future care. They are a major cancer center that has the best oncology doctors, nurses, social workers all under one roof. After I receive Dr. Epstein's second/third pathology opinion, I will send them copies of my medical history and confirm my appointment.

Mitch