Nov 17, 2009 - 10:25 pm
As previously noted, my wife and I met with my new RO today. Dr. Patrick A. Kupelian, of MD Anderson, Orlando.
What a meeting! I thoroughly enjoyed talking with this guy and came away with a very good feeling and a bunch of new and understandable information. Now a bunch of this many of you guys already know, so bear with me. This is as much for the new guys as you senior members of CSN.
Now I know from previous posts and threads that there will be exceptions taken to some of the info, but please DON'T SHOOT THE MESSENGER. I am just telling it like it is, with no embellishments.
Prior to our meeting I did a few searches on the dr and found some very interesting info. Very well respected in the RO community, an MD search found and listed 102 articles, studies and publications credited to him as author or in some other way. I was told that he would be leaving MDA for UCLA mid 2010.
When I asked him about this at the end of our meeting he said it was an opportunity that had come up suddenly and was too good to turn down. He is to be the Co-Chair of Radiation Oncology at UCLA. The guy must have something going for him.
So we talked about my PSA scores, scans, surveys and surgery. As everyone knows, following surgery you want an undetectable PSA. Mine was 0.4 at 30 days and 0.53 at about 55 days. He offered a few explanations that to me made sense.
First their may be some microscopic level of PCa activity.
Secondly, there may be some prostate organ tissue left behind that is producing PSA. This is why there are some folks that report having a .1-.2 psa that never goes up and sometimes goes down. Over time the remaining tissue may die off or maybe not.
Think about it. We all talk about margins. The prostate does not sit there with this vacuum of space around it, not does it have delineating dotted lines that read "cut here". If there is a margin it is a cut through the wall of the gland, so something has to be left behind. Now if you have a rising PSA, chances are that is not where it is coming from. But then again maybe.
I asked about the extraprostatic extension and margins and invasions and does that mean if it is PCa is it likely to be in the prostate bed. He said most likely. But at these micro-scopic levels it also could be anywhere. If the PSA tests are done from blood that is coursing through the body, it could mean that the PCa is to some degree in the blood stream as well. The blood runs through the prostate in many veins and so on, so the cancer could get out that way just as easily. This explains why the guys who have the greatest of post surgery path reports, no extension, no margin, no invasions, no anything, at some point down the road see a rise in PSA. It just means that some small amount of cells escaped into the body before the prostate was removed and it took that length of time for their little colony to grew to a point of detection.
At this point and at a such a small level it is not going to show up on any scans or surveys. But because of history and studies and so on, you radiate the prostate bed, because of the statistical likely-hood of that being where it is.
So we talked about my receiving radiation. As has been posted by others, many times there has been reference to numbers like .5 being the cutoff for SRT. BTW he explained to me the difference between Adjuvant and Salvage Radiation. Adjuvant is treatment following prostatectomy and there is NO DETECTABLE PSA. It is just a second course or additional form of treatment in an attempt to make sure we got the little bugers. If there is any detectable PSA it is therefore Salvage.
In his thinking there is no magic number for treatment with radiation. He has had success with numbers far higher and lower than .5.
We talked about side effects and so on. Most of you know them. One interesting point concerned Incontinence. He said that if you are continent, you will more likely than not remain continent. You may have a few issues like urgency, burning, etc. by these will pass. He went on to say that he will not do radiation on anyone that is not continent. If you are using multiple pads per day, he waits until you are down to 1 or none. The reasoning is that if you are Incontinent, radiation will exacerbate the situation, not help it.
I asked about the studies involving Hypofractionated IMRT. Giving the same amount of Gys in a lesser amount of time. He said that most of these were still trials, none were being done as a normal course of treatments and that all of them were being done in a Radiation First treatment regimen (no prostatectomy). So I will be getting the standard 30+ treatments at 70Gy and not the reduced 25 I was hoping for.
We also discussed Hormone Therapy. He started by saying that Surgery is curative, Radiation is curative and HT is not. It is abatement therapy, it is meant to prolong life and to allow the PCa brother to be able to live with PCa. Fairly harsh and straight forward. He went on to say that I am far too early in the process to think about HT or have to worry about decisions I might make about it in the future.
In a post the other day I told you about running Nomograms for SRT at varying levels of Gy. The higher the dose I put in, the lower the percentage I got back on progression free at 6 years. It didn't make sense and I showed them to him and asked him why.
He explained Nomograms. They are mathematical statistical analysis based on thousands of individual patient data. Those that received say 80Gy (a number I ran) were already in far worse shape than I was. The fewer number of patients with those sets of numbers skewed the data to their small subset. If they required 80Gy their results were not as good as someone's lesser aggressive cancer that only required 66 or 70Gy. The numbers can't work in a vacuum, there has to be real patients, with real outcomes, that have had their individual results put into the database.
So there is the most of it. At least what I can remember of the larger points of the discussion. I liked this guy, I felt comfortable and confident with him and I am going forward with radiation. I have an appointment Thursday for scans to begin the mapping. At the same time they will run another PSA test. It is not really to see if by some miracle my PSA has gone down, but rather to establish a baseline with his lab for consistency of further tests to be run down the road.
My guess is that I will begin treatment in a week or two, most likely the Monday after Thanksgiving.
I will of course for posterity and informational purposes for those that follow, post my daily journey down the path of SRT.
I hope you guys found this to be as interesting as I did,