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Recurrence. When is it recurrence? When do you begin treatment?

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Posted 1/22/2010 10:18 PM (GMT 0)

Hi all,

I had RRP surgery in Nov 2006. Gleason 10. Positive margins but no cancer in lymph nodes or seminal vesicles. Surgeon thought that he got it all and recommended no further treatment. I did further reseach which indicated that I was at high risk of recurrence (due to high gleason and positive margins) but that the medical community was not certain that further treatment (radiation or hormone) would prolong your life so we elected to delay treatment until/unless PSA increased.

I have had PSA test done every three months since my surgery. PSA was the lowest detecible level (0.01 or less) for 2 years and six months following surgery. Six months ago (July 2009)  PSA was 0.02. three months ago (Oct 2009), it was 0.03, this month (Jan 2010) PSA was 0.05. My dr says that he does not consider it to be a recurrence until PSA rises to 0.40 and will recommend treatment (radiaion of prostate bed first and hormone if that doesn't work) when PSA rises to 1.00.

He is a new dr for me. I go to a medical teaching hospital and previous two dr have transferred first one six months ago, second one three months ago which has been very frustrating. New dr seems OK but I have not had time yet to build rapport or trust like I had with first dr after seeing him for several years.

I would like to hear what other people have heard in response to the following:

PSA MEANIFUL: Have others heard that the PSA is not meaningful below 0.10 (or perhaps some other number)? I read that number in a John Hopkins article that I found on the internet.

RECURRENCE: I have mostly read that recurrence is defined as a PSA of 0.20. Have others heard of 0.40 (or anything else) as my dr is telling me?

TREATMENT: I have enough trouble with the side effects from the surgery, that I want to delay radiation as long as is possible (with out being foolish about it of course.) Still, waiting until PSA is 1.00 sounds a bit long to me. What have others been told about when to begin treatment? I had always assumed that if 0.20 (or 0.40 or whatever) signals recurrence, that would be when you would start treatment.

I would appreciate hearing what others have been told. If you know of any useful medical articles let me know.

Much thanks,

Ben

Posted 1/22/2010 10:39 PM (GMT 0)
I was going to post a new topic, but I think my question dovetails well on this thread.

I'm not trying to hijack this thread, just trying to add to it with my question.

 A friend of mine is worried. I think he had  a G-7 and two years ago had the robotic surgery at Ford Hospital (Dr. Stryker).

Anyway, his pathology also had positive margins. For 2 years his PSA was below 0.1.

Just recently, it was 0.1. He is pretty bummed out about this and is very anxious about his next one in 3 months. He is certain that the cancer is back.

I guess I realize that technically it will not be considered a reoccurrence until 0.2. Is that correct?

Also, what are the chances that it is back. He seems certain that it is. His wife is a more positive person and feels it is not. Well, I would probably feel like he does if it was me. I realize it is what it is and right now we don't know, but is there some probability associated  with this situation?

I'm going to try and get him to post here.

Mel

Posted 1/22/2010 10:49 PM (GMT 0)
Ben...usually the marker was above 0.2, but with the advent of ultra-low sensitivity, they are now looking at three consective rises above 0.1 to make that determination of recurrence. Having radiation as a salvage therapy in this event really doesn't make much difference in the long run if it is 0.1 or 0.5. Actually they recommend to have salvage radiation before it hits the 1.0 mark. Usually after 1.0 the effectiveness drops off considerably.

Having HT at the same time is tossed around some in the medical community and usually left for the high risk cases or fairly aggressive cancer.

I would think waiting to determine how fast the psa is rising will give you a more complete picture of what to do. Yours will be a tough call with a high gleason and so far out from surgery before a rising psa was detected. This maybe more systemic than local in which case the odds of a successful therapy with radiation would be very low.
Posted 1/22/2010 11:06 PM (GMT 0)
With a Gleason 10, it probably does mean something. What it means, I can only guess.

I have a G9, and have been waiting out the 3 month PSA's. I have decided in my own mind that when I see any kind of a trend, I am going under the radiation. It masy be too late, but I figure the odds have to be a little better if I have radiation sooner, rateher than later.

Good luck, and keep us posted on your journey.

Goodlife
Posted 1/22/2010 11:25 PM (GMT 0)
Ben - I dont know what is the specialty of the doctor(s) you are consulting, but I would consult a medical oncologist if I were in your position. I do not think that salvage radiation is the only option available to you. ADT is also an option, particularly if the disease is likely to be systemic. A medical oncologist who is very experienced working with prostate cancer (as opposed to a generalist medical oncologist) would be best able to advise you concerning these issues. The decision involves, in part, using various nomograms (and experience) to determine the likelihood that the disease is systemic (in which case salvage radiation does little if any good). Of course, if you do decide on salvage radiation, then a radiation oncologist is the doc who would do it. But I would enlist a medical oncologist to help you with the "what if anything to do" decision. I am no doctor, but waiting until psa increases to 1.0 and then starting salvage radiation seems inconsistent with prior advice I have heard and read, in comparable situations. Best wishes,
Posted 1/22/2010 11:44 PM (GMT 0)

I want to pick up on - and hopefully confirm - something LV-TX said.

Is it fair to say that other things being equal, the longer the time from surgery until biochemical recurrence (however defined), the greater the chance that the recurrence is systemic, not local?

Thanks in advance.

Zen9

Posted 1/22/2010 11:48 PM (GMT 0)
Ben, I have a couple of answers for you.   You asked for medical articles for reference; the comments I will provide here come, instead, from Dr Patrick Walsh’s book, A Guide to Surviving Prostate Cancer , 2 nd Edition.   In the chapter on “How Successful Is Treatment of Localized Prostate Cancer?” there is a section called “What should I do if my PSA comes back after surgery?” In Walsh’s view, after surgery, a PSA level of 0.2 ng/mL or higher signals a recurrence of cancer.   I have seen some other values published (0.4, specifically), but much more frequently I see the 0.2 value as commonly accepted. Regarding the question as to when to start radiation, I will quote from the book: In almost all studies of med receiving radiation therapy after a radical prostatectomy, one message stands out:   the lower the PSA level at the time of treatment, the better.   “Although no one has determined an absolute cutoff beyond which radiation does not work, most studies have shown differences in outcomes once PSA rises beyond the 1-2 ng/mL range,” [Johns Hopkins radiation oncologist Danny Y.] Song advises. Of course, radiation targets residual PC in the prostate bed.   There is a whole other discussion in the book as to whether recurring PC is “local” in the prostate bed, or from distant metastases.   Walsh quotes a Dr. Alan Partin study saying, “Men most prone to distant metastases, they found, will have one or more of these conditions:   Gleason scores of 8 or higher [you had], cancer found in their seminal vesicles and lymph nodes during surgery [you did not have], or a rise in PSA within a year after their surgery [you did not have].” Hope that this provides a little help.
Posted 1/23/2010 12:05 AM (GMT 0)
Hi Ben,

Sorry to read about your increase in PSA.
I can only tell you about my journey which started at the same time yours did. My PSA, just like yours, started to increase about 2years after my open RRP and when it reached 0.08, my Onc., Surgeon and myself decided that further action was required to combat the beast. I was told that the best chance of a positive outcome was to start SRT as soon as a recurrence is confirmed. At the start of my SRT my PSA was 0.1. The SRT was relatively uneventful with only minor rectal discomfort and some bleeding. For the the last year my PSA was at <0.04. If I was you, I would start SRT as soon as you're convinced that the cancer is back.
Hope fully this info will help you in some small way.
All the best to you.

Magaboo
Posted 1/23/2010 12:47 AM (GMT 0)
Hi Ben,
I remember the day you arrived and I have from time to time thought about you. When you used to post regularly I was still green trying to deal with my experience. So it is that I stayed active in advocacy and at HealingWell.

i do not trust what your doctors told you and I would advise to anyone who came here as Gleason 10 stage 3 to get second opinions from the original diagnosis. However, if I do recall correctly, I believe that you had your surgery at Johns Hopkins University. In which case your pathology was reviewed by Jon Epstein, probably the leading pathologist for prostate cancer. I know Pat Walsh would likely suggest staying idle until PSA hikes, and I know he is a 0.4 guy for recurrence.

That stated my research steered me towards adjuvant radiation and hormonal therapy. I started blogging after you left the first time, I recall you did return a while back. I am not sure you saw my progress so here is my website:

www.caringbridge.org/visit/tonycrispino

We have some great support still here, but the site has become a bit more populated. The opinions will vary, but all mean well...

Your old friend,

Tony
Posted 1/23/2010 12:52 AM (GMT 0)
PS:
Ben you are going to likely do well moving forward. I started leading live support groups and know many guys wearing your shoes. They have walked the walk very well. If you remember my motto, I still use it ~ stay positive. There has been progress in treating G10 guys successfully even after RP and relapse. But you need to consider all options and stay involved in each step.

Tony
Posted 1/23/2010 1:28 AM (GMT 0)
Thanks to all who have replied. I hope to hear lots more replies as information is power. A few comments,

DOCTOR: My current doctor is a urology oncologist at the major teaching hospital in my state.

SURGERY: My surgery was done at John Hopkins in Baltimore.

TC: Thanks for welcoming me back. I still log in periodically to see what is going on but I haven't posted much in the past 18 months. Good to hear from you.

Ben

Posted 1/23/2010 2:07 AM (GMT 0)
Ben, hello, you have asked some good questions, and like many things dealing with PC, the answers can vary a lot, advice even from sound doctors will vary.

On the PSA number itself, post surgery, a zero is anything below .10. Too much fuss is made about the ultra sensitive tests. The rises that may occur that mean anything, is when it starts to approach .10 and then when it goes after that.

I have completed open surgery and recently 39 treatments of SRT. With the radiation group I dealt with, the line in the sand was .50. They mutally agreed that salvage radiation was most effective before the PSA crossed the .50 line. THey also agreed that it was less effective if it crossed the 1.0 mark. Having said that, there are doctors that feel ok even at the 2.0 PSA level. Beside the raw number, the PSA velocity and doubling times is more dam**** then a lot of other factors when it comes to recurance.

My medical team considered 3 consective rises post surgery above the .10 threshold as proof of recurrance. So my submission to SRT was based primarily on that. I also was informed that the effectiveness of the SRT with my numbers and velocity issues was in the 30% range.
My one saving grace is that I did have a single positie margin, which could indicate that the remaining PC might still be in the prostate bed.

For me, the radiation was hell, and I documented it here at HW. I also had a terrible time with neck/throat radiation from 10 years ago.

My radiation oncologist did not want to mix the SRT with HT, though there are many that would disagree. The SRT is my last curative treatment, and if it fails, then I would have to consider my remaining life extending options including HT.

This next statement is purely my honest opinion from what you posted, but if you intend to go with RT or SRT, then I wouldn't wait for it to reach as high as PSA of 1.0. I would hit it hard while it has its best curative possibilities for you. I was given 72 gys over 39 sessions, which is a pretty good dose for a salvage treatment. I will know more in the next 3-6 months if it looks effective or not, the preliminary post SRT reading I got recently even disapointed my radiation oncologist.

Please keep us well posted on your situation, and your ultimate choices in what to do next. If you want to talk more in detail, I am open to email, and possibly phone conversation if you think it would help.

My best to you,

David in SC
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