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PSA 150 - Are we looking at PC w Mets or is there a chance it’s something else?

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LadyJaneK
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Joined : Jan 2019
Posts : 64
Posted 5/10/2019 9:18 AM (GMT -7)
Good news to report today...we received an end of day call yesterday that the drain sample came back w normal creatine levels, so its looking like lymphatic drainage is the cause for the elevated amounts of fluid from the drain. So wonderful to hear & very thankful 😅. I removed both tubes yesterday evening. Everything came out fine. Soaked the first few drsgs, but its settled down by this morning. He's already regained some control of his bladder. Up to the bathroom a few times through the night so that's a good sign. The catheter was in for 3wks so it might take a bit more time to find his new normal. Not loving the need for the new underwear, but all things considered he's doing great & happy to be free of those tubes. Several more weeks of recovery, and we'll find out full pathology & 1st post-op PSA results in June to see where things go from here. One step @a time! ~LjK
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GoBucks
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Posts : 989
Posted 5/10/2019 9:41 AM (GMT -7)
Good start to the weekend!
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LadyJaneK
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Joined : Jan 2019
Posts : 64
Posted 5/10/2019 9:48 AM (GMT -7)
Yes it is 😄! Looking forward to going for a walk w him & maybe for some ice cream🍿.
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FranPro
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Posts : 109
Posted 5/10/2019 10:15 AM (GMT -7)
Great news. Nothing like getting those darn tubes out and peeing like a man again. I am just over 3 months post RALP and am 100% back to dry and peeing like I used to, except not getting up 5 times a night to go. That is the good news with my recovery, I am still working and hoping for the other function to return and living 3 months at a time. I am currently <.01 but high risk on Decipher. Celebrate with that ice cream this weekend!
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Pratoman
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Posted 5/10/2019 11:06 AM (GMT -7)
Great news Jane, sounds like your back on the “normal recovery” track
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Nytngale
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Posted 5/10/2019 7:27 PM (GMT -7)
Wonderful news, Lady Jane! Great way to start the weekend! May the progress continue unabated!
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LadyJaneK
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Posts : 64
Posted 5/26/2019 3:10 PM (GMT -7)
Hello all,

We are still waiting for true spring to show itself around here. There’s actually a possibility of frost tonight!

It’s just over 2wks since pulling my husbands catheter & drain; he’s 51/2wks post RP & 20lbs lighter. His color is coming back; he had low iron & albumin levels so we’ve supplemented to brings those back up. His Bp was low too, so very light headed at times, but it’s coming back up slowly also. He had some lymphedema in his L leg after pulling the drain but that’s resolved now as well. He’s been religiously doing his Kegel’s & getting outside for daily walks through town; mowing the lawn w the tractor & helping where he can w our kitchen updates. The surgeon started him on low dose Viagra to improve blood flow, but he’s been hesitant to start it. Still a bit sore!!

Doing really good in my opinion 😀, however, he is understandably frustrated w his significant stress incontinence that is not resolving anywhere near fast enough for him. He was not liking the feeling of the depends underwear so we added the always pads that turn liquid to gel & that’s working better for him. He can change those out easier. He has some control but not when he can’t concentrate completely or he’s up & moving more. He’s having a hard time reconciling how he will deal w things at work as a welder. Thankfully our family doctor decided going back to work @6wks was too soon, so it’s been bumped tentatively to 10wks. We see the surgeon in 10 days for path results. Praying we get good news.

We know this is a fairly normal part of his recovery but it’s still hard. Any suggestions by those who’ve been where he is (we are) would be appreciated. ~LjK.
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Saipan Paradise
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Posted 5/26/2019 4:03 PM (GMT -7)
Patience. Like your husband, I still needed pads at 6 weeks post-RP, but by 12 weeks most days I was continent enough to do without them. By six months I’d stopped using them altogether. So there’s hope he’s on course for real continence.
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GoBucks
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Posts : 989
Posted 5/27/2019 7:51 PM (GMT -7)
When I came to the end of your post LadyJaneK the first word that came to mind was "patience". Then I read down and saw Saipan beat me. My experience was the same. Time is our friend.
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InTheShop
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Joined : Jan 2012
Posts : 11468
Posted 5/27/2019 9:00 PM (GMT -7)
Hang in there - it's a long slow road.

The docs did a lot of cutting in there. Takes months for the body to heal.

Andrew
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LadyJaneK
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Joined : Jan 2019
Posts : 64
Posted 6/23/2019 11:28 AM (GMT -7)
Hello All,

My husband is officially 9wks post RP. He's doing well w his recovery but has significant stress incontinence and is finding it very difficult some days getting used to this new normal. There has been improvement, so we remain hopeful. Otherwise he's doing great, enjoying his yard & garage, going for his walks & helping where he can w our home improvements.

We have seen the surgeon & finally had a chance to look at his path results and have an official diagnosis. PCaG9(4+5) pT3bN0 (M0 acc to bone scan).

PCa identified in all lobes high volume (no surprise there!); bilateral bladder neck invasion but surgical margins are negative (they took a generous portion of his urethra acc. to the surgical report), R seminal vesicale +ve & L-ve ( abuts but did not invade), all lobar & prostatic basal margins are -ve, but 1 +ve extraprostatic margin in the R apex & several +ve intraprostatic margins of the L apex. The L nerve bundle was +ve and removed to the level of the sphincter involving fragments of prostatic tissue, 15 lymph nodes removed all -ve. I spoke to the surgeon immediately following surgery & he said they had a difficult time removing the prostate & it tore @the apex under traction & he warned me then, he thought the first PSA would give an apical margin & we would do the PSA again at 12 wks before determining further treatment. He explained @6wks sometimes the body is still getting rid of the cancer cells so its not an accurate picture.

First Post-op PSA 1.04. It's much better than 150 or 185, but we were obviously hoping for a lower number. So now the 12wk PSA will determine adjuvant & salvage strategies if necessary. Hopefully not, but we have always been aware this is a likely possibility.

Taking so much of the urethra explains the stress incontinence, he's completely dry @night & can stop & start the stream which we've been told is a good sign. Bladder retraining was advised & the doctor suggested a clamp, so the bladder has a chance to fill up & the muscle doesn't weaken. We ordered the Pacey Cuff, hopefully it's not too uncomfortable & works for him (dealing w pads @work all day will not be fun). The other clamps I looked at reminded me of something you use to close a chip bag! He can drink a lot which I've mentioned before, so backing off a bit is helping especially in the evening. They've taken him off work till mid July now to concentrate on bladder retraining & he'll go back on a GRTW (gradual return-to-work) schedule. Thankfully he has wonderful insurance, I asked the surgeon for a 6mo Rx for incontinence products & they are covering them.

Has anyone else been told this info on the PSA @6wks, told the prostate tore on the way out & could produce an inaccurate 1st post-op PSA; & has anyone tried this Pacey Cuff? Here’s a link, https://paceycuff.com/

Hope you're enjoying these first days of summer! ~LjK
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Mumbo
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Posted 6/23/2019 6:27 PM (GMT -7)
Hi LJ - Glad he is doing well. Continence is typically looked at by urologists over 12 or 24 months so at 9 weeks, it is probably a bit early to making decisions or expect too much since he otherwise has good control in many situations as you noted. It takes a while to get over the surgery effects from my experience, 6 months seems about right to me now.

To your questions as best as I can attempt to answer them from my experience to date:

The 6 week PSA seems to be a waste of time to me as the 3 mos PSA is the standard for making any decisions. Normally, the PSA should be virtually gone by 6 weeks after RP but not many people start from a PSA = 50 or higher so that might contribute to the higher value. Any prostate tissue or cancer (positive margins) left after surgery can generate residual PSA. The fact that there were “tearing” complications would lead me to believe that there may be some tissue left from that possibly. The worry would be that the PSA comes from someplace else but no way to know that for a while.

I have heard about prostates “sticking” and being difficult to separate that the surgeons comment on, same with nerve bundles. In fact, there is another thread “Get it out” Syndrome about the prostate being stuck to the rectum and the surgery stopping. I don’t think it is a good thing in general for obvious reasons.

I only used the simple clamps the RO staff gave me so I could clear my bowel without peeing before some ART treatments since you need a full bladder and reasonably clear bowel which I could not do on command. BTW, I believe that is the ultimate bladder control test after surgery. The clamp you are looking at is pretty nice compared to the Dollar store version I had. I would be concerned that he might rely on it too much as it is pretty hard to tell anything once you get used to it. If he can hold his bladder normally and fill up a 200-300 ml cup, his capacity is probably ok but not strong enough to resist the pressure increase from any stress. The clamp would be good if you had to stand at a wedding but I do not see it being a good training device from my limited use, just a solution to a problem. The urologist knows more than I do so don’t pay attention to me.

3 months post-op will be when the decisions are made based on the PSA at that time. It is only a few more weeks so hang in there and hope for the best.
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LadyJaneK
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Joined : Jan 2019
Posts : 64
Posted 6/23/2019 8:46 PM (GMT -7)
Hi Mumbo,

Thanks for responding. I was told by the surgeon prior to surgery that one of the undesirable side effects of pre-op Casodex is it can cause the dead cancer cells to become sticky, sometimes making the prostate more difficult to remove. Obviously it was working on my husbands cancer cells! As soon as I heard it tore, as much as I tried not to, I envisioned cancerous tissue being left behind. The possibility of bone mets is still in the back of my mind too. All we have is a bone scan w multiple hot spots which appear to be osteoarthritis. For now though we put it aside, live our life and remain positive; we’ll know soon enough.

Thanks for letting me know your experience w the clamp & incontinence. We’ll have to watch out for getting used to it. I guess he shouldn’t wear it any more than necessary i.e. only at work or special functions. I swear he’s going to bed earlier just to get a break from the incontinence, which I totally understand. I can see how difficult dealing w it is on him. I’m sure it will get better, but right now it’s testing his patience.
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PeterDisAbelard.
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Posts : 6346
Posted 6/23/2019 11:05 PM (GMT -7)
LjK,

At the risk of being a bit of a Debby Downer I can't help pointing out that this would be a great time to make sure you have some top notch radiation oncologists in your Rolodex. With a post-op PSA of 1.04 your surgeon is drawing two cards on an inside straight if he hopes to avoid further treatment. My PSA at seven weeks was 0.01 (no less-than sign) and that was enough for my surgeon to send me to talk to an RO in the expectation that I would probably be wanting his services. Of course my surgeon is a cautious guy and he may have been spooked by my post-op pathology report that boosted me from Gleason 7(3+4) going into surgery to Gleason 9(4+5) coming out. So your mileage may vary but it never hurts to know your options.
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halbert
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Posts : 5050
Posted 6/24/2019 5:45 AM (GMT -7)
LJK, It looks, actually, as if things are going as well as can be expected at this point. It's very encouraging that he's dry at night. The stress incontinence is a challenge, and it will get better in time. It can take a long time (months, not weeks) to stabilize.

Most docs do a 6 weeks PSA to ascertain direction, but not as a final thing. And, with the G9, it would be unusual for him to be 'once and done' at this point. That's the reality. To help you think it through, the term 'half-life' is used sometimes. PSA has a half-life of about 5 days, so if his pre-surgery PSA was 180, then in 6 weeks (40 days) he would have had up to 8 halvings: 180-90-45-22-11-6-3-1.5 (which is about where he was!). To get to non-detect, he'd have to have some more: 1.5-.75-.325-.16-.08-.04-.02 etc.

So, for now, cautious optimism is the way to be!
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Mumbo
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Posted 6/24/2019 6:10 AM (GMT -7)
LJ - As a followup to PDA’s comments, I just completed ART starting at 5 months post op due to the G9 reclassification and one small positive margin even though my 3 month PSA was <0.10. It was a tough decision but I was finally recovered pretty much from surgery and continence was not a problem so I went for it as early treatment is generally better than waiting. The URO and RO both indicated that it is best to be substantially recovered from surgery before radiation since it will not make anything better and there is the risk of additional side effects. My URO indicated that it might be prudent to wait until the ED recovers but my wife and I agreed that prompt treatment was better than waiting for something that is not all that important to us in the larger picture.

My guess is that continued ADT and ART/SRT as soon as your husband can handle it is probably the next step given that you have more adverse elements than I did regardless of next PSA value. They may want to due some high powered scans to see if they can find anything depending on next PSA prior to making treatment decisions. Sorry to not be more positive but I think you know all of this from what you have observed to date. Good luck in July.
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PeterDisAbelard.
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Posted 6/24/2019 7:49 AM (GMT -7)
Halbert,

You're sorta right but mostly wrong but you're wrong about the wrong thing so you're sorta right.

You're right that serum PSA has a half-life but your 5 days figure is off by a factor of two. The usual figure quoted is "two to three days" but the values I've seen tend to cluster around 2.5. ( For instance, see table 2 here: Clearance rates of total prostate specific antigen (PSA) after radical prostatectomy in African-Americans and Caucasians ) If we use a 2.5 day half-life then after six weeks we'd expect something like a 2-16 reduction giving an expected PSA of 0.00274.

Another reason that surgeons like to wait a bit before checking PSA values after surgery is that it is not uncommon for small amounts of prostate tissue to be left behind after surgery but detached from its blood supply. Those little bits of tissue usually die but they can linger long enough to wreak havoc with PSA half-life analyses. So you're right that six weeks is early-ish but you are wrong about why.

Thing is, with Gleason 9 disease you generally don't want to spend a lot of time sitting around hoping it will go away.
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LadyJaneK
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Posts : 64
Posted 6/24/2019 9:08 AM (GMT -7)
Thanks for the info on the PSA half life guys, I'll have to look at that. In some ways it gives me a little hope; although going into surgery, the reality was he'd likely need further treatment at some point. He's surprised them so far w such a high PSA so who knows. Maybe he'll be that 1%, wouldn't that be something! Oh how I pray for that, & guidance to help us thru this stage if that's where it takes us.

We saw his RO before surgery & discussed the potential plan post op if his PSA remained detectable. ADT (Casodex & Lupron) immediately & RT to start in Sept/19. I think that's wise based on the incontinence factor. Let things heal up in there as much as possible. If he could return to work for a bit or half time through treatment that would be good too. For him it represents some "normal". ~LjK
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Mumbo
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Posted 6/24/2019 11:06 AM (GMT -7)
PDA - I took a quick look at that small study and the one person with EPE and G9 was at a 3.95 day half life. Starting PSA’s were considerably lower also than 50 that was much higher before Casodex so I am not sure that anyone knows how to predict PSA in this specific situation. halbert’s math could be as close as anyone’s guess so a 3 mos PSA will solve that problem pretty soon.

LJ - Sounds like you may be following my schedule at 5 mos post-op. I was feeling pretty good at that point and was long past the days after catheter removal. Never had a continence problem through treatment although the bladder did remind me that something was going on down there after a few weeks with some odd feelings and a little urgency once in a while. As I stated in my thread, I am pretty impressed so far with the Varian Trilogy and similar machines that do IMRT/IGRT which means there is a daily scan of the situation and adjustment before each IMRT treatment. Seems to do a good job of avoiding the bladder and rectum areas with direct radiation which helps minimize side effects. The techs will recycle you if the bladder and rectum are not to their liking in the scans which happened a few times over 37 treatments. None of this means anything to the next person in line but thought I would share since I fared ok through the couple months of treatment but not all do if you read through my thread on Adjuvant RT Experiences.
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LadyJaneK
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Posted 6/29/2019 1:58 PM (GMT -7)
Hi Mumbo,

Didn’t have time to respond till now. Taking a much needed break from home updating and headed to the cabin for the long weekend 😀.

Yes it looks like you and my husband have similar stats. Glad to see you’ve fared ok through treatment and you didn’t suffer w incontinence. Looks like your PSA is stable. What is it now after RT, or did it stay @ <0.10 ?

My husband is seeing slow improvements w the incontinence, & the Pacey Cuff is effective so far, for an afternoon or evening. Not something you would wear for more than 6-8hrs, but gives him a bit of a break inb/w. We’ll see how he does at the cabin.

Happy Canada 🇨🇦 Day & Happy July 4th! ~LjK
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Mumbo
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Posted 6/30/2019 8:54 AM (GMT -7)
LJK - Good to hear your husband is improving and the clamp is helping. I had my 6 mos PSA during ART and it was still <0.10. another month or so until the next test.
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LadyJaneK
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Posts : 64
Posted 7/22/2019 5:24 PM (GMT -7)
Hello Everyone,

Hope you’re all enjoying the summer. We had a beautiful weekend in cottage country!

My husband is now 14 wks post RP. Doing well and feeling pretty good. Back at work on a GRTW plan. He’s down to 1-2 small pads/per day which has improved his mood considerably. Only experiencing stress incontinence during periods of more activity. Like playing ping pong w his nephew & laughing like crazy; but it’s been less even during those times. Using his Pacey Cuff for short periods in between which has helped w bladder retraining. His PSA however, has gone up 😕. It was 1.04 at 6wks and 1.47 at 12wks post RP. Obviously the cancer cells are still doing there thing somewhere. We knew the numbers before the appt w the surgeon & had our questions ready.

Our surgeon feels the increase in PSA is likely from cancer cells left in the prostate bed. All lymph nodes were negative & his bone scans show hot spots that suggest osteo vs Mets i.e. the hot spots are not in areas PCa is usually found, so the surgeon trusts the radiologists findings. My husband responded to Casodex prior to surgery bringing his PSA down from 185 to 50 very quickly. Surgery brought it down to 1.04. Without any ADT treatment it went up. So we decided to try 150 of Casodex again, hold off on the Lupron & check his PSA in 6 wks. If it’s unchanged or goes up there’s no question we have to treat aggressively w combotherapy, incl. radiation, & we have an appt booked w the radiation oncologist at the end of August; but if it reduces it considerably it will be a harder decision. Do we continue w mono therapy for a period, see if it takes care of the rest of the cancer cells & only add treatments if the PSA shows its necessary or do we treat aggressively w combo-therapy now subjecting him to all those possible side effects when it might not be necessary yet??

With a PSA of 150-185 prior to surgery & no evidence of Mets or lymph node involvement even 1.47 doesn’t seem high to us for him, but we don’t want to be naive about this decision either.

Any thoughts on this are always appreciated.

~LjK
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mattam
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Posted 7/22/2019 5:36 PM (GMT -7)
I don’t see how follow up radiation could not be in his near future, with Lupron I would think. Hopefully he doesn’t have systemic mets, but that was a high initial PSA.

Good luck!
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InTheShop
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Posted 7/22/2019 9:32 PM (GMT -7)
At his PSA and risk level, I think you'll be looking at SRT with ADT at some point. I would have expected the post surgery PSA to be lower.
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Skypilot56
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Posted 7/23/2019 4:49 AM (GMT -7)
LadyJaneK, I would think as soon as your husband feels he has incontinence control and the urologist believes he is healed up enough from the surgery then the RO will want to start radiation. I'm kinda surprised that they want to wait for 6 wks for another psa test I would think they would have you on a ADT plan already but maybe that's what they are doing with the casodex? Maybe one of the new scans if available to verify no mets as then there would be no reason to have SRT Wishing you the best in whatever treatment you guys choose! 👍 JMHO

Larry
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