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Posted 6/19/2008 10:29 AM (GMT 0)
I ask this not to be told what I should do, but rather, because I value the opinion of all on this forum, what you all would do in my place. Pathology following my robotic prostatectomy in August 2007 was Gleason 4+4=8, tumour both sides, perineural invasion, tumour involved with the vascular spaces within the gland, no seminal vesicle involvement and the one node removed was clear. There was a small focus of extraprostatic extension and tumour was close in two other spots but these were not regarded as a definite positive margins. Surgical resection margin was clear. PSA to date has been undetectable (last <.001). My (highly regarded?) surgeon has never mentioned the possibility of follow up treatment (I last saw him in February)........I guess he feels that undetectable is good enough. But after much research and with the information gleaned on this forum I am feeling a little disquiet. This resulted in me today having a consultation with a medical oncologist to discuss the possibility of adjuvent ADT and/or radiation of the prostate bed in the area of the possible extention. Although he said nothing (as is their wont) I sensed he was a little surprised that this discussion had not come up with my surgeon as he felt that any adjuvent therapy would have been best carried out from about November (3 months after surgery). He is willing if I desire, to commence ADT, (he favours aggressive treatment) but wants me to get the opinion of a radiation oncologist as to whether radiating first at this stage would be beneficial. I am aware of the side effects of both treatments but it is my gut feeling to be aggressive with follow up treatment and go with radiation followed by 12-18 months of ADT. Needless to say I am now extremely P.O. with my surgeon and no longer have confidence in him. Given that if both are willing to commence adjuvent treatment (of course they will suggest the final course of action would rest with me) what course of action would you all adopt?
Bill :-)
Posted 6/19/2008 11:11 AM (GMT 0)
Hi Billy Mac,

From what I have read on this forum and what research I have done regarding your particular case, no positive margin, no seminal vesicle invasion, nodes negative and an undetectable PSA I would wait until my psa started to rise before taking any further action. Surgeons will operate, oncologists will radiate, but is it really necessary.....thats the question. You would probably get more piece of mind if you went ahead with the radiation, however you would risk more ED issues and Continence issues. This disease is a crap shoot, and most all of the decisions are left up to you to decide your course of treatment. This is just MY opinion, I'm sure you will received many different responses from all ends of the treatment spectrum....good luck in your search. JWB
Posted 6/19/2008 11:41 AM (GMT 0)
I agree with that assessment.

Bill, your numbers are very similar to mine except that I didn't have the small focal extension. My surgeon has not suggested any further treatment for me. I have considered it but decided against it. Why do more damage to my body to defend against something that may never happen?

So I would (and am) waiting for the PSA to rise. Then and only then would I undertake extra treatment.
Posted 6/19/2008 1:11 PM (GMT 0)
BillyMac - we, too, were in the same boat. We were dealing with an upgraded pathology report and a 30%-50% chance of return "with possible bladder neck involvement/cell leakage into fatty tissue." However, the fact that the first post-surgery PSA is undetectable is a biggie in deciding on further treatment. Our surgeon, we know, was guiding us along the right path in recommending no further treatment. At 3 months post-surgery, your body is still healing. Would you have really wanted to pack in radiation on top of that if you didn't have to? We've told others many times - IF that first PSA had been anything but, we would have taken aggressive action.

With that said, here we are almost 2 years out of surgery and we are all clean. Our percentages for recurrence have gone down drastically - and soon, we'll be in the same category as an "all clear."

That doesn't mean you won't worry - we still do, but it's without the added burden of dealing with radiation - at least for the present.
Posted 6/19/2008 2:37 PM (GMT 0)
BillyMac,

I had radiation treatments after RPP because my urologist strongly recommended that I see a radiologist and an oncologist because of my positive margin. But in all my research it seems the jury is still out as to the timing of adjuvent therapy some doctors saying the sooner the better and others saying wait for a rise in PSA. It would appear your doctor is in the latter camp. I did regress as far as incontinence, I still put a pad on when I leave the house for any length of time. ED seems to have just reached a plateau at about a 50% erection without meds or pumps.

As you can see in my signature I didn't have radiation treatments until 5 1/2 months after my surgery. What effect that has on any chance of recurrence, only time will tell. As JWB said, this disease is a crap shoot and I believe all these different treatments we're receiving are also.

It seems you're on the right track seeing an oncologist and radiologist and I'm sure the course of action that feels right for you will materialize.

Ken
Posted 6/19/2008 3:29 PM (GMT 0)

Hey Bill! Is there anyway you could call the lab and find out what your exact PSA is?  I agree with the above posts, unless your PSA, while still "undetectable" has gone up.  For example, if your PSA was .03 and is now .06, I would do the radiation. 

My father had negative margins, except for one focally positive.  "Focally" defined as touching but not going through.  So, the million dollar question is how could he have a positive lymph node (which was a pin drop size positive) without having a margin that was clearly positive.  Anyways, because of the positive lymph node, even though he had a post op PSA of .07 and then at around 8 weeks .05 we decided to do the radiation.  Obviously, no guarantees, but after seeing the study that was posted yesterday in here, I am so grateful that he did the radiation.  Still, no guarantees, but we obviously want the best odds.  So, with all that being said, if it were me, :-)  I would see if I could get a specific PSA reading.  If your PSA is .001, I would wait, but if it has risen but not reached "detectable" I would fire the torpedoes.  

Side effects are serious.  My father tolerated radiation very well, however, he HATES HT and is counting the days until he can stop.  He is only a couple months out of IMRT and he looks great and is physically like a horse. :)  It's a heavy decision, but this is obviously a good place to kick around ideas.  Good luck in your decision making process.  We obviously have your back regardless of what decision you make.  tongue

Posted 6/19/2008 11:20 PM (GMT 0)
Bill-

Here's one vote for being as aggressive as possible. The SEs of radiation are minimal, and the SEs of HT, often, but not always, can be a pain. Metastatic PC is no fun at all.

It's obvious you're more informed than your doctors and you should be running the show. And don't ever hesitate to "fire" a doctor in whom you've lost confidence.

(BTW - I haven't seen/heard the word "wont" in a long time - way to go!)

-Les
Posted 6/20/2008 3:49 AM (GMT 0)

Hi Bill

Your decision is a tough one which only you can make based on the best medical advice you can receive.  Coincidentally, I just made a posting today relating to a study undertaken by Johns Hopkins re: "Radiation Therapy Prolongs Life in Men With Recurrent Prostate Cancer".  It can be found on this thread:  https://www.healingwell.com/community/default.aspx?f=35&p=3&m=753719

It doesn't answer your question because you don't not know at this juncture if you have recurring cancer or will get it, based on your recent PSA tests. However, there seems to be no question that radiation treatment of the prostate bed after prostate surgery (earlier rather than later) can be very beneficial if there is any question of recurring PCa (which usually means that the PSA is on the rise at unacceptable levels over a period of several months).  The thing that bothers me about HT or ADT is that it slows down the cancer, but does not eradicate it.  It also has some negative side effects which reduce the quality of one's life.  If you do decide to opt for radiation treatment, I don't know why it would have to be supplemented by HT either before or after such treatment, in your present situation.  I think it was a very smart move  for you to consult with a medical oncologist who hopefully lends objectivity in situations like yours.  Radiation treatment today doesn't have the feared reputation it had several years ago.  It is much more sophisticated today with greatly reduced chances of negative side effects down the road. 

Best of luck to you in your decision.

Dave

Posted 6/20/2008 4:25 AM (GMT 0)

Billy Mac,

We're very similar in the overall situation, with you having a higher gleason score and I had a positive margin.  I also had a small post-surgical PSA reading after 6 months, of .08, still undetectable according to some.  I decided on adjuant HT and radiation because of the positive margins and slight rise in PSA.  My surgeon and oncologist encouraged this, as per a couple of recent studies.  HOWEVER, you don't have positive margins and your PSA continues to be <.01.  While I haven't had any real noticable side effects of the radiation, as my surgeon mentioned, it probably destroyed any of the nerves he spared in surgery.  Also, hormone therapy can have it's own set of nuances, like just sweating for no good reason at times.  I keep active, and haven't noticed any severe fatigue.  We're all not doctors, and whatever decision you make must be yours, but with your numbers, perhaps the dreaded "watchful waiting" is the best bet.  Good luck with whatever you choose.

Posted 6/20/2008 6:13 AM (GMT 0)
Personally, if I were in a similar situaton, I would do nothing unless there was  a PSA rise.

Posted 6/20/2008 11:56 AM (GMT 0)
my gleason was upgraded to gleason 8 after surgery. i did not have positive margins but was wondering if i should do radiation. etc. because of the high grade gleason. i have an appt with my surgeon today for the 6 month check up and had planned on asking him what the next course of action is. for me, i believe i will wait if/when psa begins to rise. one thing for sure, we have to do our homework to stay informed....
Posted 6/20/2008 1:20 PM (GMT 0)
Many thanks to all for your thoughts. They are much appreciated. It really is a tough decision. My last PSA as I said was completely undetectable at less than .001 at 9 months out, although at these low levels obviously there would be some margin of error. I have a follow up appointment with a radiological oncologist in about 6 weeks and it will be interesting to hear his opinion. I do not understand why my surgeon did not even raise the question of follow up radiation, even if only to discount the necessity of it. Despite his excellent reputation with the knife I would describe his office staff as fairly disorganized.............I received instructions on Kegel exercises and surgery preparation 4 days before my op and then only because I asked "is there something I should be doing in the lead-up". Later, rather than them being offered, I had to ask for a copy my surgical pathology results and then only received half of the report.............it is just as well I remembered what we discussed during the post surgery consultation and realized it was incomplete....... I knew what missing items to ask for. It is galling that at such a stressful time there is such inattention to a patients needs. Or perhaps that's it.............they have patients not people. Anyway I digress .... it is the future that is important not the past. Thanks again for the input.
Bill
Posted 6/20/2008 1:42 PM (GMT 0)
I have similar concerns with this.

I got upgraded to a 7 from a 6 and one positive margin after DaVinci.  My six week undectable PSA was huge according to the Urologist and Oncologist.  Both the Surgeon and Oncologist state that I have a 86% chance of no reoccurence at this point.  Oncologist states because I am so young he wants better odds than 86% with this.  He stated that He, the Surgeon and the Radiation Oncologist will meet at the 3 month mark and see how my PSA is doing and likely recomend to Radiate the site.  He wants me to heal at least 3 months and have good continence before starting.

Frank

Posted 6/20/2008 11:55 PM (GMT 0)

This is my understanding of how radiation and ADT kills/or suppresses cancer cells -- someone please correct me if I am wrong:

Radiation. Radiation kills cells while they are in the process of dividing. It catches them at their most vulnerable -- with their pants down so to speak. Cancer cells divide a lot more frequently than normal cells, so a course of radiation treatment will proportionately kill a lot more cancer cells than normal cells -- and hopefully all of the cancer cells at the site being radiated. It won't kill cancer cells outside the site being radiated.

ADT (hormone). ADT treatment does not kill cancer cells, but it slows down the rate at which prostate cells divide. Both cancerous and non-cancerous are affected simply because cells continue to die off naturally, but are not replaced to nearly the usual extent. For this reason, ADT can reduce the size of both the prostate and any tumors, but will not reduce either to zero.

A low and not-rising PSA indicates at worst, inactive cancer cells, and maybe none at all. Radiation will have no effect on non-existent cancer cells (obviously!) and it will affect inactive cancer cells only to the same extent as normal cells. ADT will cause some cancer cells to die off without being replaced, but not all of them.

So my conclusion is that for inactive cancer cells, radiation and/or ADT will not do any good. Because of the side effects of those treatments, we are better waiting until clear evidence of active cancer cells -- rising PSA.  And if there are indeed no cancer cells, or they remain inactive,  we will never get that rising PSA, and will have avoided useless and harmful treatment.

Just my opinion of course.

Posted 6/21/2008 12:10 AM (GMT 0)
All

I undestand that some proton facilities are giving surgery patients salvage radiation with protons so that might be something you might research if the need arises.

RIchard yeah tongue yeah

Posted 6/21/2008 4:42 AM (GMT 0)

Piano,

Very interesting thanks for adding this

Frank

Posted 6/21/2008 4:54 AM (GMT 0)

Hi Billymac,

The decisions are yours and only yours.  You were right is seeking an oncologist.  Not just for the possible positive margin, but because you have a high risk Gleason.  But it is contraversial at best what to do next.  And it won't make a bad surgeon or a good oncologist to suggest anything they could.  That said, I believe and have subscribed to aggressive treatment even though I have never seen a rise in PSA.  I am not certain the suggestion that you see the radiation oncologist first is correct.  In fact, what I have read, if you decide on HT, do it a month ahead of any radiation.  but again, very contraversial.  And your surgeon should have said so.  And your oncologist, and your radiation oncologist.  This I know for sure. 

You need to feel comfortable with this.  You need to make this call.  It isn't easy.

Tony

Posted 6/21/2008 5:14 AM (GMT 0)
Piano,
I think I have to respond with what I have learned.

Radiation will attack both cancer cells and non-cancerous cells equally. This is the ying and the yang of using radiation. In choosing radiation, the Hope is that radiating an area where suspected residual cancer may still exist, the remaining cancer will be eliminated, while also hitting a tolerable amount of healthy tissue. You are correct in stating that this is a local treatment. But there is no different effect on cancerous cells or non-cancerous cells.  So targeting is critical.  In the case of using radiation as a primary treatment, the rules don't change.  Except that targeting the primary cancer area in intensified. (thus 45 treeatments instead of the 38 I endured post-op).

On HT. HT DOES kill cancer cells by depriving them of testosterone and dihydrotestosterone. While this may slow disease, it won't completely stop it as prostate cancer cells can generate their own androgens. Eventually, if they still exist, they can survive without androgens (hormone Refractory). But there are those hoping that HT will prevent relapse (i.e. me).

Of course I've had a great deal of time to study these treatments, as I used both, there still remains a great deal of contraversy in the stage and Gleason being discussed.

Tony
Posted 6/21/2008 7:22 AM (GMT 0)
Thanks TC, That was one thing the medical oncologist said............it is a very controversial area..........wait and see or pre-emptive strike. The consultation with the radiation oncologist is to get his feeling about radiation following surgery without an increase in PSA at this time. I lean toward an aggressive approach but I will make the final decision when I have had the next consultation. I am curious as to your reasons for doing HT before radiation as the medical oncologist stated that he would not necessarily proceed with HT if I chose precautionary radiation. Then again I may have misunderstood and he meant not to undertake HT post radiation. I shall clarify that with him later.
Bill
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