After 3 years at undetectable PSA values, now I find the numbers rising , so it looks like the doc will want to go the radiation therapy route soon.
I'm really concerned about 2 things: first, the side effects :incontinence (I have very little leakage now), ability to achieve an erection (I need the injections now to maintain it to function satisfactorily), will I be able to work during the treatments? How did you feel during the treatment period?
Secondly, It sounds tremendously expensive, with frequent CT scans and all. How expensive is it? (My insurance isn't the greatest). Since this is all happening at this time of year, I need to plan financially for all this to take place in the Spring.
After 3 years at undetectable PSA values, now I find the numbers rising , so it looks like the doc will want to go the radiation therapy route soon.
Hi Mewhit, it sounds like you and I have something in common. I too went 3 years after my RP before my cancer came back. Radiation was ordered for me ( well, I actually could have gone to hormone therapy, but radiation was my last chance for a cure, so I took that route. )
I'm really concerned about 2 things: first, the side effects :incontinence (I have very little leakage now), ability to achieve an erection (I need the injections now to maintain it to function satisfactorily), will I be able to work during the treatments? How did you feel during the treatment period?
As far as side effects go, I didn't experience much other than some bowel and bladder irritation that went away a couple months after my treatment was done. I'm retired so I didn't have to contend with work, but since my side effects were relatively minor, I would have been able to work without any difficulty if I was still working. I never got tired or exhausted from the treatments ( as I have heard ), so other than being a little depressed because my cancer came back, I felt fine.
Secondly, It sounds tremendously expensive, with frequent CT scans and all. How expensive is it? (My insurance isn't the greatest). Since this is all happening at this time of year, I need to plan financially for all this to take place in the Spring.
The cost wasn't a factor here in Ontario, Canada since our government insurance pays for it all. ( Nice!) I have no idea what the cost would have been if I had to pay for it out of pocket, but with all the pretreatments and the radiation itself ( 36 treatments ), I would imagine it would be quite expensive!
Thanks for your thoughts.
Take care.....Lionel
Last edited by flyfisher37; 10-02-2009 at 10:42 AM.
Reason: forgot to sign my name
Thanks for your comments Lionel, I feel a little better hearing that the radiation doesnt necessarily screw up what normality we are able to maintain after RP.
Mike
I'm responding to your first post. Facing a rising PSA after surgery has got to be unnerving, and I'm glad your mind was eased after Lionel gave some reassuring information about his experience with radiation side effects.
But some recurrences after surgery are really mild, some not requiring any major follow-up action. Could you give us the details - dates and PSA values? Also, some docs still rely on conventional PSA tests that only measure to <0.1 or so, rather than the ultrasensitive tests that are a hundred times more sensitive, measuring reliably to <0.01, so it's not clear what "undetectable" means in your case.
Quote:
Originally Posted by mewhit
After 3 years at undetectable PSA values, now I find the numbers rising , so it looks like the doc will want to go the radiation therapy route soon.
...
Johns Hopkins has done some very interesting work on classifying recurrences after surgery. Basically, they found that three main factors are highly informative about the seriousness of a recurrence. The most useful piece of information was the PSA doubling time PSADT, which they broke into four groups from worst to best (<3.0 months; 3.0-8.9 months; 9.0-14.9 months; and =or>15.0 months). The other two factors were whether the recurrence had occurred <= 3 years after surgery (not as good) or more than three years after surgery (better), with the period ending when the PSA hit or exceeded 0.2, and whether the surgical pathology Gleason Score was =>8 (not as good) or <8 (better). Those with all good characteristics had a chance of surviving prostate cancer ("prostate cancer specific survival") of 100% at the five year point and an impressive 94% at the 15 year point. In contrast, those in the worst case group had a 51% chance of survival at 5 years and a <1% chance at 15 years.
However, it is very important to note that this study's usefulness is in enabling us to gauge the seriousness of disease - not to make predictions for outcomes for patients recently treated and recurring. A key point is that Johns Hopkins was quite reluctant to use hormonal blockade therapy until very late for such recurring patients. Now we know that it it better to use it fairly early if the recurrence looks serious. Outcomes should therefore be much better.
Another fairly recently learned factor is your PSA velocity in the year before you were diagnosed, if you know it. The key question: was it rising at a rate of more than 2.0 per year, or 2.0 or lower (and the lower, the better, but with 2.0 being the key threshold). This is based on research led by renowned researcher Anthony D'Amico, MD, that was published for surgery in 2004 in the New England Journal of Medicine.
If you can't find either publication or you want further detail or explanation, I have both studies and can tell you what they say.
Also, while we are still crossing our fingers and hoping for a favorable confirming report next year, a well-regarded study of quality pomegranate juice or extract (8 oz of PomWonderful juice daily in the study) showed stunning success in slowing PSA doubling times for post-surgery prostate cancer patients. On average, their times lengthened from 15 months to more than 50 months, and a follow-up study of the same men showed an even greater lengthening (to an average of 88 months! ) for those who stayed with the program. I started a thread on that on 9/16/2009 - "Pomegranate juice/extract - great results from update of earlier study." Dr. Myers has been informally reporting similar success with recurring men in his practice, and other doctors are echoing those reports. Something like that might be all you would need.
The mild drugs finasteride or Avodart might also be all that you need for success in turning around a recurrence.
There are also other lifestyle tactics that you could use.
Mewhit,
I finished 36 rad's almost two weeks ago. I had my RP last February, and rad started mid August, (one Doc called a 'close margin' another called it a 'positive margin' in the path report, so there I went). I had some minor bladder and bowel irritaion which is easing more each day. I was also a bit tired after each Tx and in general starting about halfway through. In the other department, there wasnt much time for "improvement' but that also is getting better. I'm not in a great hurry as it'll likely be a year at least for most men. My cost? $10. Total cost? $78,000 !
Thanks for the encouraging report, Tom. I hope to be able to work all the way through the radiation if I can. I have a BCBS plan at work, don't know how it will pay yet.
Did you have to have a MRI before every treatment? Also, how long did the total daily treatment take, on average?
Jim,
Thanks for all the great information. I need to do some digging now to find the numbers for checking into this. It sounds like I might be in the center of the discussion although at this point I need to look at all the numbers again. I know that my PSA scores went from ~6 to ~10 to ~12 in the 2 years prior to the surgery, and I think my gleason score was 7, although I'm not entirely sure right now either. The 3 years post surgery PSA was undetectable using the >.1 values, not the ultrasensitive, and I was .1 at 36 months, .2 at 39 months, and .25 at 41 months. I will be getting another PSA draw this Friday, so I'll know more next week.
"how long did the total daily treatment take, on average?"
Mewhit,
My first session was with the Doc, going through the Tx and historic results, etc. The study he quoted (european long term)was if there was any involvment of the lymph nodes, seminal vesicles, high post-op PSA or any positive margins the rate of recurrence was 40% without rad vs <5% with rad. My case was only one margin ("into the orange peel but not out of it"), no other criteria, so it was a no-brainer. Hopefully it was completely unneccesary to begin with but that's not a chance I took because there is no cure if even one cell escaped the surgeon's scalpel. He also stated "in 15 years as a Radiation Oncologist he had'nt put anyone in a colostomy bag yet". That was good to hear!
Second session was 'mapping', where the Rad Tech's made a vacloc bag of my lower legs and gave me four tatoo dots (1 below, one above the former prostate area and one on each hip) to keep me in the same posion each Tx. I was in my shorts on the table, pulled down to you know where, the techs were not shy about moving me around to line up in needed, but they did place a towel over that area!
The treatment itself was anywhere from 10-20 minutes, that's with lining me up exactly based on the original MRI, then a scan, and then the zapping. They have to be within .7 mm before they can zap.
The Tx itself was seven angles: right rear quarter, right side, right front quarter, straigh on, left front quarter, left side, left rear quarter, doses seemed to be about 20 seonds each. A full bladder was required, it helps them see the scan better. Once in a while there was difficulty in lining me up so a second scan was necessary, twice IIRC. The whole schedule went by quickly it seemed, but took seven weeks, M-Friday. You will want to rest up on the weekends if you can starting about 2/3's through.
I dont miss the treatment but I do miss the RadTech girls, they were great!
I had no problems going to work, just had to make sure someone could cover my post quickly so I could hit the can, as the Doc said "always trust your bladder and rectum". I work ten days on, four days off, so I didnt get to relax every weekend, that may have contributed to the fatigue. Three weeks out now and I feel good, still some minor burning during urination which should go away soon. Overall, it was easy. Now it's time to work on the 'blood flow' department, my wife is my therapist, we'll get there eventually!
Oh, at 53, I believe I was by far the youngest patient there with the exception of two women in their 30's who were dealing with breast cancer.
Good Luck!
) for those who stayed with the program. I started a thread on that on 9/16/2009 - "Pomegranate juice/extract - great results from update of earlier study." Dr. Myers has been informally reporting similar success with recurring men in his practice, and other doctors are echoing those reports. Something like that might be all you would need.
