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Posted 10/19/2012 5:44 AM (GMT 0)

Hi Everyone

 

I had a chat this week with a Medical Oncologist to get his opinion on my condition and seek his view on my prognosis.  I wanted an alternative view on my disease to that of my Uro.

 

The Oncologist told me that for younger men Prostate Cancer is almost a different disease than it is for older guys and thus needs to be taken a lot more seriously.  He went on to say that my prognosis was quite good; however, if I was to experience a rise in my PSA he would strongly recommend radiation therapy.  He said that although the chance of the cancer being local (i.e. in my case) was only about 40%, it did represent another chance of a “cure”.  His advice was also that there were sound arguments in delaying either hormone therapy, or chemotherapy for as long as possible, as these therapies are not curative.

 

This contrasted to the advice of my Uro, who has suggested beginning hormone therapy should my PSA begin to rise.

 

Can I get some of your views on this subject?  If you were me what would you do in the event of a rise in your PSA?  My chances are 60/40 that the cancer would be distant (and thus radiation therapy would probably be of no use), but radiation therapy is another chance of a “cure”.  Do you think (given these odds) that the adverse effects of the radiation are worth another chance of a “cure”.  Of course, I am still hopeful that my PSA will not begin to rise, or at least not for a few years, but I want to be prepared with a strategy should this occur sooner rather than later.

Posted 10/19/2012 6:57 AM (GMT 0)
Bob
You sound like you have assessed things about right.
My own case was slightly more acute as I had SVI and my PSA only went down to 0.1 after surgery.
The agreement at that stage, based on the hospital's protocol, was that I would have SRT if my PSA rose and went over 0.2.
I did not have a period of stable "zeros". Within a few months my PSA and was up to 0.4; that was a pretty fast doubling time and I was still under 50.

The docs did however say it was totally impossible to tell if the PSA was being made by one single large area of nasty cells near the prostate or by hundreds of tiny groups of cells all over my body. However, if it was just in my prostate bed, then it would respond well to the SRT.
With such a small PSA the cancerous cells producing it would not be detectable on any kind of scan. Catch-22 problem was that if we waited till they were big enough to show up on a scan, then it would probably be too late to treat it with RT.
The SRT was thus almost used as a diagnostic tool. IE If the SRT worked then it meant the cancer had been in the oprostae bed, if it didnl;t woprk then it emant the cancer had spread, and thus I was to have no HT so that it would be clear that if my PSA went down it was only due to successful SRT.
So I had SRT and my PSA went down to "zero" (currently less than 0.01).

Yes, I have been affected by the SRT side effects (wearing pads again), but I do feel cured.

But Bob, at this stage I really wouldn't dwell too much on something that may never happen. And there's a good chance that at some future date scan techniques will be more advanced so that when someone has a BCR it may be possible to locate the nasty cells accurately and thus target any treatment accurtately thereby removing the 60/40 uncertainty.

Alf
Posted 10/19/2012 11:25 AM (GMT 0)
Good story Alf, I like the idea of using SRT as a diagnostic tool, but the most important part for you Bob, is Alf's last paragraph.

Instead of seeing a Uro and MO, go talk to a bartender. No need to worry unnecessarily. wink
Posted 10/19/2012 1:29 PM (GMT 0)
I think the odds you were given, were a bit overstated by the doctor. I had a single tiny positive margin after surgery. Within 9 months of surgery, I had fully confirmed BCR. I met with 3 different Radiation Oncologists before settling in with one. The best odds I was given at the time of SRT being a cure for me, was 20%.

All three RO's admitted that its an educated guess at best, as to the remaining cancer being local or not. If it ends up not being local, as in my case, since SRT failed in less than 9 months, its a lot to put the body through for nothing. There are short term and long term side effects that are often understated by RO's.

In my case, not only did radiation not remotely helped, it was bungled, and it left me with perm. body damage, the need of a urostomy, and severe chronic pain and fatigue that I still live with 3 years later.

If you go through radiation, and they are wrong about the location, then you have just used up your last curative hope of stopping the cancer.

Hopefully, you will never need to make this decision, and I hope you don't.

David
--------------------------------------

On another part of your post, talking about the oncologist not being one to rush into HT or chemo. Almost 2 years ago here at HW, when I started talking about my MD Anderson oncologist, who only specializes in advanced prostate and advance breast cancer, didn't believe in jumping the gun with aggressive treatments, I was made fun of, ridiculed, even told I was a fool and had a death wish, and that my doctor was all wrong.

My, how times have changed. We have several members here, just in the past year, reporting back to HW, that their oncologist also don't believe in the school of early intervention. I guess someone had to be the first one. I noticed that the guys that report that strategy here, are no longer made fun of like I was.

In my case, my long term uro/surgeon, my RO, and my oncologist all share that same view. That they don't believe in the early use of HT or chemo, until there is some evidence that something harmful is going on. And they say, why take on all the risk and side effects from the treatments, before they are needed. HT is only going to work for so long anyway, so why use it up before its really needed? That has been their position.
Posted 10/19/2012 3:25 PM (GMT 0)
Ugh the million dollar question...Hubby's surgeon recommends radiation b/c of a postive margin but left it totally up to hubby..so far so good..PSA test 0...it seems to me it's a crap shoot...and the side effects are too..some have issues...some don't....not sure what hubby will do..my feelings are wait to see if he ever has a reoccurrence...I've seen lots of cases where the PCa comes back with no positive margins as well...so really...how do you make the decision? It's mind boggling when you think about it..
Posted 10/19/2012 4:14 PM (GMT 0)

I think the tertiary G5 presents much more to the issue.   I am guessing my doctors would be talking adjuvant SRT and ADT3, as they are agressive because they approach PCA as always being worse than the numbers indicate.   They are also more in favor of adjuvant treatments rather than sequentiol treatments.   This is in line with Myers and other specialists that believe that hitting the cancer from several different directions at once is more effective than sequential singular treatments reacting to PSA rises since the last singular treatment.

I suggest you think more about the problems of the tertiary G5 and what it does to the probabilities.   Then have some more detailed discussions with your docs or even seek an opinion from one of the PCA specialists we often read about.

Posted 10/19/2012 8:23 PM (GMT 0)

Ozbob said...
Hi Everyone

<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />

I had a chat this week with a Medical Oncologist to get his opinion on my condition and seek his view on my prognosis.<span style="mso-spacerun: yes"> I wanted an alternative view on my disease to that of my Uro.



The Oncologist told me that for younger men Prostate Cancer is almost a different disease than it is for older guys and thus needs to be taken a lot more seriously.<span style="mso-spacerun: yes"> He went on to say that my prognosis was quite good; however, if I was to experience a rise in my PSA he would strongly recommend radiation therapy.<span style="mso-spacerun: yes"> He said that although the chance of the cancer being local (i.e. in my case) was only about 40%, it did represent another chance of a “cure”.<span style="mso-spacerun: yes"> His advice was also that there were sound arguments in delaying either hormone therapy, or chemotherapy for as long as possible, as these therapies are not curative.



This contrasted to the advice of my Uro, who has suggested beginning hormone therapy should my PSA begin to rise.



Can I get some of your views on this subject?<span style="mso-spacerun: yes"> If you were me what would you do in the event of a rise in your PSA?<span style="mso-spacerun: yes"> My chances are 60/40 that the cancer would be distant (and thus radiation therapy would probably be of no use), but radiation therapy is another chance of a “cure”.<span style="mso-spacerun: yes"> Do you think (given these odds) that the adverse effects of the radiation are worth another chance of a “cure”.<span style="mso-spacerun: yes"> Of course, I am still hopeful that my PSA will not begin to rise, or at least not for a few years, but I want to be prepared with a strategy should this occur sooner rather than later.

My URO and my Brachy ONCO also had a difference of opinion and I'm not so sure about playing with those odds when it comes to Cancer. I posted a lot of my experiences in other threads
Posted 10/20/2012 3:37 AM (GMT 0)
You might want to check the nomogram at MSKCC. They have a calculator that estimates probability of success of radiation depending on your specific factors. You can type in various scenarios adn see how the numbers change.

One thing I noticed when playing with it is that the odds go up A LOT when looking at salvage radiation concurrent with adjuvant HT rather than salvage radiation alone. This of course makes it impossible to use the radiation as a diagnostic tool. But it is more consistent with the idea of multi-modal therapy being a better approach where curative treatment is a realistic intent.
Posted 10/20/2012 4:32 AM (GMT 0)
pro, that's a good point, but I couldn't even get 3 RO's at the same clinic to agree on that approach, they contradicted each other's opinion about using HT with SRT. Pretty bad when the professionals can't even agree. The consensus among two of them, was that they wanted to see clear results of using the radiation only, without having HT in the way to blur the line.

based on my experience, i definitely wouldn't want anyone to jump into SRT based on having a postive margin as the only factor, at least way for minimal proof of bcr. its not worth the risk, considering the low odds of success.

david
Posted 10/20/2012 5:22 AM (GMT 0)
Planning is good but don't go overboard on it now. You have a chance that it will never happen and it's likely to be a few years before you need to consider it. Given the rate of change in treatments and available drugs it's very likely that if it ever happens you'll have choices we haven't thought of now.

I say error on the side of optimism and just live and let the future take care of the future.

Right now I am going to bed and not think about this stuff any more.

oh, my other opinion is to see how fast the PSA is rising before deciding. In the event of a slow rise, I'd do something slow. In the event of a fast rise - I'd start throwing everything at it. The trick is to know when to panic and when to just get another beer.

yeah, not that helpful and I shouldn't be allowed near a keyboard this late at night...
All the best,
Andrew
Posted 10/20/2012 6:07 AM (GMT 0)
IF you need or decide on RT, you might as well add HT to it as an adjunct. It has been shown that combining RT and HT produce better results than RT alone..The HT is usually started before the radiation and continues for a year or two..
Posted 10/20/2012 7:10 AM (GMT 0)
Thanks guys for your informed comments and words of support.

Fairwind, what I think my Oncologist was trying to say was that because HT is not a curative therapy he would recommend radiation. His exact words for HT and Chemo were that "there are good arguments for keeping your powder dry". This is an Aussie expression. I'm not sure if it's used in the US.
Posted 10/20/2012 12:22 PM (GMT 0)

Fairwind said...
IF you need or decide on RT, you might as well add HT to it as an adjunct. It has been shown that combining RT and HT produce better results than RT alone..The HT is usually started before the radiation and continues for a year or two..

I agree on the combination, but the continuation for a year or two depends on the extent of the spread or the possibility. Given the SEs with the HT, why go through all that torment if it's not necessary.
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