Post Surgery (RALP) - Radiation, Hormone, and further

I am 56. I had surgery, Robotic Assisted Laparoscopic Prostatectomy (RALP), in 2009. My margins were clear/negative. They did not take any pelvic lymph nodes. The pre-surgery biopsy was 3+4. The post surgery results showed 4+3. I had zero PSA (less than 0.01) for two years. I have started to have a gradual increase in PSA, which is currently at 0.16 - this being three years after surgery.

I have met with my surgeon, and he recommended Radiation and Hormone Therapy. I had an Ultrasound (TRUS) and they were not able to see anything. I have met with the Head of the Oncology Radiation Dept. We are going to proceed with 6-8 weeks of Hormone (Casodex via pill, and Lupron via injection). This will be followed by approx 7 weeks of Radiation. We have not yet discussed the details of Radiation, apart from definitely in the Prostate Bed, and possibly in the Pelvic Lymph areas.

I had read on this forum, many weeks ago, from some guys who went through similar situation (post surgery, PSA recurrence, requiring Radiation). My initial take on what they guys had posted, I'll sum it up in my words, of what i thought i heard them say "Yep, some 20% of surgery patients have recurrence, and yep, you go on for radiation, and there are the side effects (tired, incontinence, potency, etc.). But after after about a month or so, i was mostly back to normal". That seemed to be a quick summation of what i read. Or, maybe it was what i wanted to be there, in their words.

I started to proceed into this phase (radiation, hormones) as if it was really not that big of a deal. However, in my meeting with the Oncology Radiologist, he was mentioning numbers like "50% of post surgery radiation is successful IF it is in the prostate bed". And if it is elsewhere, then the options/treatment changes. We did not really get into what the options are if the radiation is not successful. I have read about more intense, more long term Hormone treatments. )I do have Dr. Walsh's book.).

The reason for my post today is that i am somewhat scared. I am more scared than when i learned I had P/C. I am more scared now, then just before the 5-6 hours of surgery. I am more scared now, then when i learned that i might need, and then would need Radiation. Up until now, it has been (a) do the surgery and you will go on to live a normal life again. Then (b) have the radiation, and it will be behind you. I could deal with both of those. I am now wondering, what if it is NOT in the Prostate Bed, and it is in the Lymph nodes, or it is in the bones (i think they called it "other distant locations"). Am i looking at dying within 2-3 years? 3-5 years? I have heard and read horror stories of "Advanced Cancer" and specifically "Advanced Prostate Cancer", the endless pain, etc.

I thought that i was prepared for anything. I even thought that inside (in my head, heart, soul, etc.) that i was OK even if i ended up dying. My kids are out of the house. I have a retirement fun, 401k, and even have life insurance. But i now realize that i am not as ok as I thought, about the final stages. I guess i never thought it could come to any final cancer stages. Let me state that i do realize that i am not there now, i am not there yet. They hope to get it all with Radiation, and that will be the end of it.

However, i want to know about what happens if they don't get it all, or any of it, because it is elsewhere. Realistically, in a worse case scenario, am i looking at 2-3 years? 3-5 years? or what. I do realize that no one can put firm numbers in a situation like mine. And hopefully, they will get it. But if they don't what are the averages that i am looking at?

thanks.

Southern Comfort.

Thank you for the response. You are correct that i am allowing myself to get ahead of where i need to be, right now.

First, let me answer your question. They did not do a DRE, but actually one step better, a TRUS (Ultrasound up the rectum, by one of the best in the country. And while up there, he placed three Gold Seed Markers. He did not see or feel anything.

Second, let me explain a portion of why I am more concerned than i might have expected to be, at this time. It seems like much of what was "good" news is possibly turning out to be "possibly bad" news.

(a) the surgical margins were clear/negative. (i have held on to this, since the surgery as a very good thing. And, apparently it *is* a good thing, provided that you do not have recurrence. However, if you do have a recurrence, then the negative/clear margins are not necessarily good. Let explain (as it was explained to me). On the reverse, if I had positive margins, and I then had a recurrence, THEN they could conclude "ok, it is most likely in the prostate bed, because the margins were not clear, we have recurrence, and statistically that is probably WHERE it is, and HOW it got there. However, with Negative Margins AND recurrence, then it is not as likely to be in the prostate bed. (more info below related to this statement).

(b) they did not remove any Lymph nodes during surgery. (since surgery, i have considered this to be a good thing. It wasn't advanced enough for them to take the Lymph nodes. A good thing, right? However, since they did not remove the Lymph Nodes, and now that there is a recurrence, it is (at least a possibility) of where the recurrence is located. Not a good thing.

(c) pre-surgery biopsy = 3+4 (seemed much better than 4+3). Well, the post-surgery results were 4+3. They even conceded recently that if it had been 4+3 going into the surgery, then they would have been more inclined to take the Lymph nodes (at the time of the surgery).

(d) the recent TRUS (ultrasound) was negative; they didn't find anything. I went home thinking "awesome, they didn't find anything. However, if they had found something via Ultrasound, then they would have known where it was. Now, with TRUS negative, they don't know (conclusively) where it is.

All the initial positive results, seem to be negative now. (the way i view it. They did not say it the way that i am saying it. They made statements (dots). I am connecting the dots, based on what they said.

Even my surgeon, who recommended the Radiation, made some comment about me being so "young" and therefore wanting to proceed with the treatment. I wasn't sure exactly what he meant. I know wonder if he meant, because you are so young, you have that many more years, to possibly be hit with later stages of cancer. As compared to if i was "78", and it was slow growing, maybe they could conclude that by the time it was aggressive enough to really affect me, i would most likely die of something else.

OK, OK, i admit my head is spinning a bit. And my statements are not completely rational. I kind of come in and out, of feeling overwhelmed, and then 10-15 minutes later, i feel better.

I admit that i am 'using' this forum to vent my thoughts and feelings. My wife is very supportive. But you all are the only ones who REALLY undertand what i am going through, what i am feeling, etc.

thanks

Southern Comfort (by the way, i used to drink that back in college days, in the 70s),

I have not really calculated the DT (doubling time).

Per the folks at the facility where i am going, technically i have not even reached the official level for recurrence. I am currently at 0.16, and the Onc/Radiologist, as well as my Surgeon, told me that many do not consider Recurrence until 0.2 (and some wait even longer than 0.2, like 0.4). This facility is aggressive. They request that all PSA be "ultra-sensitive" PSA, whereas some places prefer the normal PSA testing. They prefer to catch any "trends" before it gets to 0.2 (or higher). I do appreciate their diligence.

As for DT, they indicated that at my level it is more difficult to compute a doubling time. They indicated that once it goes into whole numbers (1>2, 2>4, 4>8, etc) then the doubling time is more accurate.

For whatever it is worth, here are my numbers:

3/5/2012: PSA "0.16" (approx three years after surgery)
1/30/2012: PSA "0.15
10/12/2011: PSA “0.12”
7/7/2011: PSA “0.10”
1/27/2011: PSA “0.07” (approx two years after surgery)
10/11/2010: PSA “0.05”
7/14/2010: PSA “0.04”
3/26/2010: PSA “0.03” (one year after surgery)
11/12/2009: PSA “0.01”
7/27/2009: PSA “< 0.01”
4/8/2009: PSA “< 0.01”
2/24/2009: Robot Assisted Radical Prostatectomy

I just got off the phone with one of the folks from the facility. He confirmed your recommendation, no thinking in terms of number of years. He indicated that it *is* good to consider all scenarios, and to ask questions about all scenarios (good, bad, worse case), so you have some idea of what the possibilities are, and what the possible steps are. He added, that with my numbers, and my staging, that my life expectancy numbers are not any different than what would otherwise the case. However, the quality of life could be affected based on the progression (negative or positive). One worse case scenario, with bone cancer, it can be very painful, and there are treatments (hormone to slow down, radiate in specific areas to get rid of, etc. - my words, not his). Even in organs, there are steps that they can take to slow down, and/or attack the localized disease). He indicated that per my numbers, i am not even officially in the ST (Salvage Treatment group), which is officially considered 1.2 (or above). But because they are aggressive in watching and treating, and because my graph of numbers projects out to certain likely conclusions, therefore I fall into the "adjunct treatment" (similar to those with High Risk factors, even though i did not have the High Risk issues:P/C outside prostate, positive margins, etc.)

thanks again for your response.

Fiftiesmale

For what it's worth I have reached the conclusion that PSADT can be an important action timing tool. My psa trend and Gleason number are similiar to your's. My docs havn't as yet proposed additional treatment. I do recognize that there may be other factors involved. You do have the added benefit of better accuracy in your psa numbers. It seems to me you could get a pretty good PSADT from your last three numbers. I'm seeing my doc again next week and intend to discusss PSADT with him once again. I'll also post my new PSADT using the last three psa values which will be above 0.1. I'm also a young 77 which may be another reason I won't jump to additional treatment.