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8 Weeks Post Surgery - Today I Met My New Radiation Oncologist

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

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,

Sonny

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I too had another appointment with Mike Koch at Indiana university School of Medicine for yet another oppinion. I liked him and what he had to say. BTW he doesn't like the Partin Tables because they are skewed in a negative way for the patient and it was interesting that he had dinner with Mr. Partin on Monday night this week. With my gleason of 3+3=6 and even with the palable nodgle he felt he would spare both nerves...He said if you take away just one of the two nerves there is only a 25% you would not be impotent. He did not recomend the endorectol with coil as it would not really tell much...He would not take any Lympnods unless there was reason to do so when in surgery...all based on my gleason of 6. If I had more agressive cancer he would then opt to be more agressive on everything...including trying to take up to 20 nodes per side going wider and taking nerve bundles. He has done about 800 robotic procedures. He said he was doing the supra pubic catheter but got too many complaints about pain from patients and went back to catheter, 14 French size. The one part I did not like was that residents in his program would be doing some of the surgery...He said he would not let them do anything that would compromise the outcome of my results. I just have a problem with that although...his stats are quite good....indicating all cases that have similar stats as mine he would be closer to 97% free 5 and 10 years down the road than 95% which is for even more advanced gleasons 4+3 and 3+4. He indicated about 2/3rds of all gleasons rise one tick with the post op path and only about 25% go lower with the post op path.

Did you ever get the email I sent?

Oh also, I asked him if he would have it done in town who would he choose...said my other two guys intervied Hollensbe and Scott - if he would travel would have Twari do it over Mani Menon. Dr. Koch is currently interviewing a guy from Twari's lab who was also at Mani Menon previously and he said he would choose Twari over Mani. This is all just jabber to me as I am not willing to travel...additionally he thought Twari would only take cash and not go through insurance...but wasn't certain about that.

I really wanted to hear your comments via email that you have for me. My email is randy_in_indy@sbcglobal.net.

Good luck with both your's and Lynn's Rad treatments!

Randy

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Good luck Sonny,
Let's hope the rad gets the little sods left behind

Mike

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Sonny,
thank you for posting your discussion with the Doctor. It gives valuable information to others that may face radiation in the future.

Larry in TN

NM
Posts: 214
Joined: Jul 2009

Thanks for posting.like Larry said we who have had the surgery recently really dont know if we will eventually travel down the same road as you are.

It really helps to have this information and hopefully will never need it but if I do its nice to go in informed.

Again and as always prayers to you and yours and wishing you good luck in these procedures.....

Nick

KMFRY50
Posts: 3
Joined: Nov 2009

Sonny, Thanks for the information ,
I just got home for seeing my doctor my; 5 month PSA was .2 up from the PSA <.1 at the 3 month mark.
I elected to do a course of what I thought was adjuvant radiation based on studies that I read ; I have gone thur all the testing/mapping procedures and I am scheduled to start my treatments Monday the 30th,(7 weeks , 5 times a week ) FOX CHASE CANCER CENTER-PHILA
However I guess after reading your posts I guess now I am having salvge radiation, I don,t think it changes the treament much.
My doctor offered the same reasons that you posted for having PSA after radical prostrate surgery
To be honest with you I am scared of the not knowing what the future holds , but I guess thats true of alot of the people on this site. We deal with it the best we can
I will be thinking of you because it appears we will be having the same tratment at the same time.
I wish you best of luck
Mike

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

Sonny,

As someone who is brand new to this whole thing and thirsting for as much informations as I can find, thank you for posting this information. I wish you and your wife all the best. My thoughts and prayers are with you.

Joe

William Parkinson
Posts: 60
Joined: Oct 2009

You posted this the very day I was under the knife so it was not until now that I got the chance to read it. I wanted to mention two things. First, Dr. Kupelian is one of the most repected and published RO that I know of. I have read many clinical papers that he co-authored with other researchers. You are in very good hands indeed. Also, as I reviewed this stuff one thing became clear and it was good news. Having salvage RT has the same morbidity profile as it would as if you had never had the prostatectomy to begin with. Roughly speaking, the rates of bladder neck stricture, rectal trauma, and so on, are the same as if this was your first-line treatment choice. This was just one of the compelling reasons, in my mind at least, to go with surgery first, given that salvage prostatectomy is frought with numerous pitfalls and usually an unacceptable level of higher grade morbidities. In the hands of some seasoned surgeons, like Eastham at Memorial Sloan-Kettering, the rates come down a bit, but my God, they are still quite high. So I, for one, am quite hopeful for a successful outcome here. Good luck and keep all of us posted.
Cheers
Bill

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