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Decision time - adjuvant radiation vs wait and see - indecision seems insurmountable obstacle for me

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Posted 6/26/2013 1:01 PM (GMT 0)
Cohorts and supporters:

I posted on this topic a while back, but I'm still racked with indecision.

One change recently is my last PSA (the second since surgery) came back as <.001. Yay for that, but in some ways I actually wish it was rising so I'd have a clearer path to choose.

See stats, but basically I need to decide adjuvant radiation vs wait and see / salvage.

I'm getting conflicting opinions.

My surgeon says wait and see, but when asked for data or studies he couldn't really produce much.

My oncologists - I've talked to three. Two say adjuvant. One says either way.

Worst part is I may be somewhat unusual (like a special snowflake) in that I have only one risk factor. Positive margin. But it's huge. 1.2 cm. I've actually had several oncologists indicate pretty strongly that's sortof the biggest they've ever seen.

It's all Gleason 6 at the margin, and some say Gleason 6 can't or doesn't grow outside the prostate. That supposedly there are studies out there showing that. But try as I might I can't find that info.

The other factor I can't nail down is radiation side effects long term. I can live with bowel and other issues during and immediately after radiation.

But I can't get good data on serious bowel problems or urine issue long term. Particularly for a guy like me, that hasn't hit 50 yet.

My urinary function was fantastic a month ago. Peed like a racehorse, great control.

Weirdly since then I've developed stop and start peeing and weak flow.

Sexual function? I was partially ED before surgery, so the more research I do I think I'm never going to get sexual function back. In short more often than not before surgery I couldn't perform adequately during actual intercourse. I could get to the starting gate (so to speak), but at least half the time couldn't finish the race.

I'm actually totally cool with a penile implant down the road. What' I'm not cool with is doctors telling me to wait a year or two or three or five to make 100 percent certain I don't recover on my own.

The sexual side effects of surgery are FAR more of a problem for me than I thought they would be. I thought I would be cool with it, but I'm not. Turns out it's a much bigger part of my life than I thought.

ANY thoughts anyone has would be fantastic.

I guess the unresolved issues are how much of an improvement in odds do I get from adjuvant vs wait and see/ salvage, what are long term odds of bowel or urine issues from radiation specifically for a younger guy like me, and does radiation 'freeze' urinary function AND sexual function recovery?
Posted 6/26/2013 1:24 PM (GMT 0)
There's no way I would recommend you having radiation now with a psa of .02. You are so far under the .10 undectable mark. You are already dealing with ED issues, both before and after surgery. Radiation is not going to help that situation, but probably only make it worse.

I would wait until, and only until there is positive proof you have recurrence. You are a long way from that in my opinion. And with the positive margin aspect, for some men - it means recurrence right away, and for others, it never happens.

I see no harm in you waiting, don't treat a problem that isn't a problem at this point.

I had quick recurance after surgery, then I had quick recurrence from the radiation, and the radiation for me destroyed my life as I knew it. Rare? Perhaps, but its a risk that comes with radiation, so why put yourself out there for the risk if you don't need the treatment.

Good luck, think slowly and wisely about this very important decision.

davi
Posted 6/26/2013 1:26 PM (GMT 0)
David:

Thanks.

Actually a clarification.

I'm actually PSA <.001. I updated my profile with that new PSA but it looks like the update didn't take effect before my first posting posted.
Posted 6/26/2013 1:44 PM (GMT 0)
Happy to hear that clarification. You are as close to zero as it is possible to be. I would be even more emphatic in my answer and suggestion to you had I known that.

Radiation will be your second and final curative card if you use it, so you really want to hold until you know you need to use it. And don't subject your body to the rigors of radiation until its proven that it's needed.

david
Posted 6/26/2013 2:00 PM (GMT 0)
It appears results are better the lower the PSA when radiation is begun. However, beginning salvage at some preset level, say .4, appears to only have a small negative effect. The advantage is up to 50% will never need see a PSA rise and need salvage.

Adjuvant versus salvage radiotherapy for high-risk prostate cancer patients.
King CR., Semin Radiat Oncol. 2013 Jul;23(3):215-21.
Posted 6/26/2013 2:18 PM (GMT 0)
Aachen,

Here's an abstract for the study usually referenced:

www.ncbi.nlm.nih.gov/pubmed/22531173

It is a retrospective review of surgeries in which both prostate and lymph nodes were removed. Of interest were those very rare cases where the lymph nodes were positive for cancer while the prostate was graded GS <= 6. Those cases would be the evidence that, for those men at least, their GS6 cancer had metastasized without first progressing to a higher Gleason score. They looked at 14,123 surgeries and found 22 cases where the Gleason score was <=6 and the nodes were positive. They went back and reviewed the pathologies (data? preserved samples?) for 19 of those and in all cases where able to convince themselves that the original pathology had been wrong and none of them were simple, uncomplicated Gleason 6es.

There are a few inferences that must be drawn for this to apply to your situation but it is pretty reassuring nonetheless.

I must admit a bias here. I generally like the idea of adjuvant treatment to hit potential problems hard and early -- to try to get a good look at prostate cancer in your rear-view mirror (where things sometimes may be closer than they appear).

I say that to establish some context for the statement that, if I were you, I'd wait and see. You should let your doctors watch your PSA while you obsess for a while about recovering your sexual function.

That's what I would do.
Posted 6/26/2013 7:26 PM (GMT 0)
Aachen,

Only you can make that decision but, with your numbers I would not even consider getting zapped at this point. In fact, I am 8 years out from DaVinci and my psa was undetectable for 5 years before it started to rise slowly. Now at 0.13 and my uro is now starting to push me toward SRT. (I think he has a partnership in the rad-lab). Anyway I am now going thru the decision you are faced with. However, if I could go back, knowing that this would be my outcome -- I still wouldn't have opted for adjuvant SRT!! I have had 8 great years with no incontinence or ED issues and, until psa started to rise, prostate cancer was hardly a thought. I wouldn't trade those 8 years for the uncertainty of side effects from radiation. Even now I have a VERY slow doubling time and I am trying to stretch it out as long as I can. I'm now 65, very fit, active and with no other health issues. Even now I am still not convinced that I want to risk being nuked.

I am on a program of anit-inflamatory supplements including pomegranite, curcumin, broccoli extract, green tea etc. and eat a healthy diet. One PSA doubling calculator suggests that the tool is only valid once psa reaches 0.10. Using that and plugging in my numbers my doubling time is currently around 6 years. It may change at my next psa check but meanwhile I give some of the credit to my diet and supplementation --- something that may be of benefit to you.

Good luck with whatever you decide.

Posted 6/26/2013 7:28 PM (GMT 0)
Forgot to mention, as you will see in my signature, I had positive margins (2) as well.
Posted 6/26/2013 7:41 PM (GMT 0)
Jmon,

On your post-op pathology you were a Gleason 7 (3+4), right? I think that strengthens your statement.
Posted 6/26/2013 8:02 PM (GMT 0)
Yep, 3+4
Posted 6/26/2013 8:16 PM (GMT 0)
Four years ago I was faced with the same decision. three months post surgery I had ED and was totally incontinent with a PSA <0.04 so I decided against radiation. I took the gamble and at year 4 it looks like I won.

Some doc's kid is going to a state school instead of a fancy shmancy private school because of me. (TG, Thank's for that info.)

Jeff
Posted 6/26/2013 9:56 PM (GMT 0)
Only you can decide, and please remember that none of us here are doctors. Based on my personal experience, adjuvant wasn't widely used when I had my open RP 11 years ago. My post surgery pathology had me at Gleason 7 (3+4) and with seminal vessicle invasion, meaning I did have definite adverse signs suggesting I'd probably need further treatment at some point.

Unlike you, I didn't have to choose then between adjuvant or waiting for SRT if needed, because adjuvant radiation wasn't much used then. As it turned out, I did end up having SRT, but not until my PSA hit 0.4 about seven years after my surgery. My results so far have been excellent -- I'm now more than 3 years post-SRT and my PSA is still literally zero (0.00).

If I were in your position today I would postpone any radiation until I had at least a measurable and increasing PSA over several readings. You and your docs can debate the threshold for starting radiation. But I would be very reluctant to go ahead with it with a PSA reading .001.

There is a risk of side effects and in the case of some -- notably Purgatory -- the side effects can be extreme. In my case, the SRT resulted in rectal bleeding beginning about 8 months after treatment which continued for about a year and then gradually resolved.

Also I see you are only 47, so you should consider and discuss with your doctors the possible long-term risks of the radiation exposure inducing a cancer some years down the road, and then add that risk factor into the mix when you are weighing potential benefits vs risks.

Sorry to say, none of these decisions are crystal clear, and we each must make our own educated choices and then hope for the best.

Jim
Posted 6/26/2013 10:02 PM (GMT 0)
Bohemond:

Glad to hear of your good results. That's encouraging.

I appreciate all that have responded, and am hoping for even more feedback.

I did find this study interesting.

Early Salvage Radiation Therapy Does Not Compromise Cancer Control in Patients with pT3N0 Prostate Cancer After Radical Prostatectomy: Results of a Match-controlled Multi-institutional Analysis

http://www.europeanurology.com/article/S0302-2838(12)00532-5/pdf/Early+Salvage+Radiation+Therapy+Does+Not+Compromise+Cancer+Control+in+Patients+with+pT3N0+Prostate+Cancer+After+Radical+Prostatectomy%3A+Results+of+a+Match-controlled+Multi-institutional+Analysis

It seems to address the idea of very early salvage radiation, as opposed to just 'all salvage radiation'.

Seems to indicate that if you start radiation while the PSA is still very low ( <.3 seems to be optimal), that it's about the same as adjuvant.

Anybody have any thoughts on that specifically?
Posted 6/26/2013 10:03 PM (GMT 0)
Peter:

Thank you. Very interesting study on Gleason 6 and lymph nodes.

Can we then say the same thing would be true of Gleason 6 and spreading generally? Or is that too much to say?
Posted 6/26/2013 10:35 PM (GMT 0)
Before and after surgery and every time I had new data, I ran my numbers through the S-K nomograms.
In the beginning, post surgery and without radiation they predicted I had a 25% chance of biochemical recurrence within x years. (I forget the numbers exactly). If I had radiation within 18 weeks of surgery they predicted I would have a 20% chance of biochemical recurrence.
Given the state of my side effects (as bad as they could be) I decided that the extra 5% risk reduction was not worth the risk of being that way forever.
Run your numbers and see if you conclude the same thing.

Good luck
J
Posted 6/27/2013 12:59 AM (GMT 0)
I would recommend giving yourself a breather from all the numbers and give yourself some cancer free days.
When I had my discussion with the Princess Margaret Hospital Radiation Oncologist- he was not in favour of me doing radiation right away.
I had not reached the typical 0.20 threshold - and also he did not feel I was ready to cope with radiation therapy.
With you being in the Zero Club - PSA - <0.10 - I would take some more time .
The end result and treatment is your decision alone.
Wishing you peace and contentment.
hugs,
Bronson
Posted 6/27/2013 4:12 AM (GMT 0)
Aachen-
Does your path report tell you whether there was any G4 at the positive margin or at the bladder neck spot? If it were me, I'd have a lot more confidence to wait if I knew that there were no G4s hanging around waiting to grow.

The evidence in my file is this study that found that true GS6 was never metastatic:
Gleason 6 Prostate Cancers Diagnosed in the PSA Era Are Never Metastatic at the Time of Radical Prostatectomy

but this study found that about 10% of men who died after a diagnosis of CRPC started with GS6:(were they truly GS6?)
Evidence That Gleason Score 6 Cancer Can Evolve to Lethal Disease.

and this small study that seems to indicate that GS8s do not evolve from GS6s -- they both emerge in parallel:
The genomic relationship among matched prostate cancer foci.

but this study found that only certain G3s progress to G4:
Clonal progression of prostate cancers from Gleason grade 3 to grade 4.

I don't know if any of this helps, or if it just muddies the waters.

- Allen
Posted 6/27/2013 7:05 AM (GMT 0)

Aachen said...
Cohorts and supporters:
It's all Gleason 6 at the margin, and some say Gleason 6 can't or doesn't grow outside the prostate. That supposedly there are studies out there showing that. But try as I might I can't find that info.

The general thought is that Gleason 6 cannot survive outside of the prostate. Unlike higher Gleason grades, which can survive on the outside, many experts believe that a Gleason grade 3 (as in 3+3=6) cancer cell is completely reliant on the environment within the prostate for nourishment. That is why Gleason 6 RP patients with positive margins are thought to still be low risk.

The thought regarding G6 positive margins is that if cutting through these cells does not destroy them, their presence outside the prostate environment will destroy them.

If I recall, Johns Hopkins once did a study of 17,000 Gleason 6 (confirmed in post-op pathology) RP patients. The number of these patients whose cancer had spread was absolute ZERO.

Others may have more details on this.

Good luck in whatever you decide,
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.
Posted 6/27/2013 8:00 AM (GMT 0)
Aachen
I don't have any advice for u..but I empathize. My husband and I are faced with the same decision. Good luck:) Alison
Posted 6/27/2013 12:00 PM (GMT 0)
Alison:

Feel free to email me directly (email address deleted by mod) I'm happy to share my research and thoughts so far.

Looks like your husband and I are in a similar circumstance.

It's best to keep one's email address out of comment text. There seems to be one in your profile.

Post Edited By Moderator (PeterDisAbelard) : 6/28/2013 5:34:00 AM (GMT-6)

Posted 6/27/2013 12:03 PM (GMT 0)
Allen:

According to Jonathan Epstein at Johns Hopkins, the positive margin is all Gleason 6. The bladder neck area was involved, but they couldn't find any actual cancer in the bladder neck itself left behind. I'm not quite sure what that even means - 'involved' versus actual finding it there.

The Gleason 7 (3+4) was tertiary, and according to Epstein and another pathologist it was a very weak tertiary 7, and not in the positive margin area.
Posted 6/27/2013 12:12 PM (GMT 0)
Allen:

Those links were terrific. Thank you.

The one seems to indicate strongly that the genetic makeup of the individual is crucial.

Given that, would it make sense to have the Prolaris genetic test to determine what my genetic makeup is? I would seem to be the ideal candidate for that, but weirdly no one on these forums boards seems very excited about the genetic testing. Am I missing something?

http://prolaristest.com/information-for-physicians/prolaris-post-prostatectomy/
Posted 6/28/2013 5:19 AM (GMT 0)
I sympathize with the angst of your decision, more so, be cause it seems so much for naught. I totally hope that whatever you do works out for you. I have seen so much of this on this forum in the last year. People suffering, real suffering from numbers that 3 years ago would have been having folks popping champagne. I will never, never understand this. I wish I could, it would help with my own angst about the needlessness of it all, and plz allow me to have this opinion. How silly it all is, I just do not get it and I have tried. > .001.
Wow it does just not compute. You seem to want a guarantee , have no doubt ,zero doubt. Life isn't like that, never will be and never should be. I would say Good Luck, but you, in my opinion and do not get mad at me for stating it, seem to want to be in a position, where you need, neither hope, faith or luck. Plz take this in the spirit in which I give it. I will always support you and am showing it by this post. I will never support a decision to treat with those numbers and I am showing it by this post. some will understand my point, some will not. Please give your opinions to Achaen and not to me. Its a small point in as MrsWW says " the scheme of things " Logo
Posted 6/28/2013 5:48 AM (GMT 0)
Allison,

What is your husband's current PSA reading? Didn't see it in your stats.

david
Posted 6/28/2013 9:01 AM (GMT 0)
Aachen-

Maybe prolaris. If you can find a place that's doing the TMPRSS2:ERG fusion test on a clinical trial that might be better (and less expensive). It all sounds very borderline to me. I can see why your doctors are divided. You understand the risk -- only you can make the decision.

- Allen
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