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After RP Surgery Persistent PSA 4.0 but Negative Margins and Clean Scans

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Posted 10/22/2018 8:25 PM (GMT 0)
Hi,
Sort of new here, but putting this out for input or ideas. Here's my situation - Diagnosed in July with PSA 10.7, Gleason Score 4+3, clean bone, CT, and PSMA/PET scans, and completed RALP RP at Stanford in August. Post-pathology was clean too - negative margins on 15 lymph nodes and seminal vessels. I'm healthy, fit, and no symptoms.

Big shock was 4.0 PSA at first test at 6 weeks and then again at 4.5 at 10 weeks. Really alarmed, depressed, and and trying to get my head around it. I understand it is likely micro-metastatic cancer and ADT is likely up next.

Anyone else have similar experience? Hoping to get second opinion from UCSF and learn if any trials are available. Stanford will conduct additional scan/test to try and locate the cancer and trying to get a team to help me understand all treatment options. Thanks in advance for any input.
Posted 10/22/2018 8:49 PM (GMT 0)
Wow, that’s a tough one. With a post RALP PSA of 4.5, I’d imagine that one of the advanced scans (PSMA) has a decent chance of picking up wherever it’s coming from. I think you have to just wait for the additional scans,for more info. It sure sounds like as you said, ADT is I’m your future. Others, more knowledgeable than me, will be along soon with comments, so stay tuned. Good luck, try to stay positive, lots can be done to control this.
Posted 10/22/2018 8:55 PM (GMT 0)
What was your surgeon’s explanation? We’re you referred to a medical oncologist?
Posted 10/22/2018 9:41 PM (GMT 0)
Talk to UCSF. Something just doesn't add up here. If you had scans before surgery that showed nothing, you'd expect to have better PSA now.

Unless the surgeon missed something or have been cursed, the explanation isn't obvious. A second medical opinion is in order.

Andrew
Posted 10/22/2018 10:21 PM (GMT 0)
Thanks for the comments. Haven’t met with other doctors yet, just the surgical oncologist who was really surprised by the results.

Setting up a meeting soon to get better info from additional oncologists. As noted, given nothing was visible on any of the scans and no margins the high PSA was so unexpected.

Will share updates. ...
Posted 10/22/2018 10:30 PM (GMT 0)
Did you check to make sure he really removed your entire prostate? That is very high given your circumstance. I would get a scan to see what is going on.
Posted 10/23/2018 10:42 AM (GMT 0)
I understand how worry you can be. It is a strange case. Some tests are sensitive to other substances. Have you repeated your test at another laboratory?. Have you been in contact with poultrary or other animals? You may have HAMA (human anti-mouse antibodies) contamined blood.
Posted 10/23/2018 1:05 PM (GMT 0)
Your surgeon most probably missed something. You need a 2nd opinion and a CT PET scan soon.

Good luck!
Posted 10/23/2018 1:36 PM (GMT 0)
I think its unlikely the PSA tests are wrong. Some of the scans are not that helpful.
Questions:
Is there a better imaging test like PET of the prostate bed?
Would radiation of the prostate bed be a benefit?
There is a similar thread running here now. Good luck.

Post Edited (RobertC) : 10/23/2018 7:39:34 AM (GMT-6)

Posted 10/23/2018 3:47 PM (GMT 0)
My PC story after RP is similar to yours. As in my signature, RP, 4/13, PSA=7.6. After surgery, PSA=2.31. No other drugs or procedures, just AS for 5.3 years. 12/15 psa=8.71. Uro ready to start ADT. PSA started dropping. 9/16, PSA=1.14 and it has been around that number until the last test which was 6/18, PSA=1.17. Joined a clinical trial that included a PSMA PET scan 8/18(18F-DCFPyl). 2 lymph nodes positive, this after 5.3 years of AS. URO/surgeon said lymph nodes too difficult and small to remove, recommended RT with 2 years ADT. Started Casodex(3 weeks) 9/18 and ADT(6months, my decision ), a week later. 6 weeks of RT to start 11/18.

The usual treatment after RP is RT and HT making sure that you get all of the cancer that was missed in the surgery. In my case, I am glad that I never followed this path as I have had a completely normal, extremely active life style for over 5 years after RP. The only reason that I am being treated with ADT and RT is because of the advances in the PSMA PET scans that can detect much smaller lesions than the conventional BS and CT scans or I would still be on AS until my PSA numbers started to rise which I guess we will never know. My RO thinks that by radiating the prostate bed and zapping the 2 positive lymph nodes, most of the PC that has been identified, will be eliminated.

My opinion is before going directly to HT and or RT, see if you can find out by an up to date PSMA Pet scan if the high PSA numbers are from lesions or like in my case, from PC cells that eventually died for one reason or another(immune system?) and made my PSA numbers drop so dramatically. This is my theory because none of the experts have an explanation for why my PSA numbers have gone up and down so rapidly.

As many posters to this forum have said, everyone 's situation regarding PC can be very different, thus the treatment can also be very different.

Dave
Posted 10/23/2018 4:38 PM (GMT 0)
RobertC

C11-Choline PET scan -- pretty good
Axumin PET Scan -- better
18F-DCFPyL PET -- BEST but only in trials, check with NIH
Posted 10/23/2018 4:47 PM (GMT 0)
I also had persistent PSA after prostate was removed.

Had 68 Gallium pet scan at ucsf that found uptake in regional lymph nodes.

I would, if I were you, have one of the newer scans, 68 Gallium or other, before SRT or HMT.

If scan finds uptake in regional area you have a chance for cure. If outside regional area radiation would be useless.

Bobby Mac
Posted 10/23/2018 10:02 PM (GMT 0)
So sorry to hear your news. I had a PSA of around 12 and did the RRP and after about 7 weeks I had a PSA of 9.41. Doc said he was shocked because he knows he got it all. Did another PSA test and it went to 9.61. Scans showed nothing. I was on ADT for over two years and as of 9 months ago have been off Lupron because my osteopenia was getting so bad, I have been and still am at an undetectable level for PSA. I am in a sort of remission and it could go a while. Keep the faith and be prepared for the ADT trip. It has its drawbacks but beats the alternative. Good luck!!!
Posted 10/24/2018 5:18 PM (GMT 0)
Thanks everyone for the encouragement and insights. I'm intensely gathering information now, and as you all know its a lot to absorb. I'm waiting to hear back from the team at Stanford, but have heard back from UCSF suggesting the Axumin PET Scan. Recognizing now that the most important first step is trying to see if the cancer can be located to determine the treatment options.

Ironic, but I'm hoping the doctor missed some and that a scan will identify the cancer near the prostate. Will continue to share updates. Thanks again.
Posted 10/24/2018 9:21 PM (GMT 0)

PGduane said...
Thanks everyone for the encouragement and insights. I'm intensely gathering information now, and as you all know its a lot to absorb.

Ironic, but I'm hoping the doctor missed some and that a scan will identify the cancer near the prostate.

It is ironic that the best situation is to locate a tumor the surgeon missed, and get it radiated. That’s exactly what has happened to me. Best of luck to you!
Posted 10/25/2018 11:32 AM (GMT 0)
PCDuane.... I came out of surgery also detectable but not with a number like you have, As Gary said hope it's just a spot they missed, interesting that your post ops report was clean. Hope you are able to get one of the new scans and find the source of this PCA that is giving you the high reading. From my experience I would think some kind of ADT will be in your future. Wishing you the best!

Larry
Posted 11/2/2018 2:53 PM (GMT 0)
Hi All, As an update I am meeting with the extra team (medical and radiation oncologists) at Stanford next week. Another round of scans are planned, and then I have second opinion meetings set with UCSF (and maybe MD Anderson) as needed.

I also met with with my general practitioner who gave me some hope. Although he isn't an expert in PCa, he thinks the probability is high that the da vinci RALP left some prostate tissue behind, thus the the relatively small drop in PSA (10.7 to 4.0) and relatively high post-surgery PSA (4). Given the clean bone, CT, and PET scans before the surgery and the clean pathology (negative margins 0/15 lymph nodes) I'm sure hoping this is the case. One other thing supporting this view is that my surgery was complicated and took nearly twice as long as planned (the surgeon said I had scar tissue and things weren't "where they were expected").

I suppose that I'll know soon enough if my PSA remains stable around 4, or if the post-surgery scans see something over the coming weeks. If some prostate tissue was left behind, I hope surgery or radiation can finish the job. Of course, I don't want to get my hopes up too high, since the alternative of micrometastatic PCa remains very possible too, and the pathology report doesn't indicate they didn't get the whole prostate. I guess another explanation is that some lymph nodes or surrounding areas have PCa and were just not part of the 15 that were removed and clean.

Anyone hear of RALP where a good amount of prostate tissue was missed, or persistent high PSA post-surgery from failure to remove all prostate tissue?

Thanks all.
Posted 11/2/2018 3:22 PM (GMT 0)

PGduane said...

Anyone hear of RALP where a good amount of prostate tissue was missed, or persistent high PSA post-surgery from failure to remove all prostate tissue?

Thanks all.

YES...see my signature.

You have an impressive team lined up! I looked at all my options, many of which were 'off the reservation', and settled for SRT. So far, so good.
Posted 11/2/2018 4:55 PM (GMT 0)
Get that team working for you. Hopefully the scans will show where the problem is.

Andrew
Posted 11/9/2018 8:54 PM (GMT 0)
Hi All,
Wanted to share an update as we're finally learning some new things.

I met with the Stanford team and had my first post-surgery scan, the Axumin CT. Results are not final, but radiologist identified uptake at a lymph node by the sacrum. She said it is close to the prostate bed, but technically not part of it. I guess it was missed on the original pre-op CT scans. A new PSA test was again 4.5, so we're thankful it was flat to 3 weeks ago. I have an MRI Wednesday and MO/RO recommending RT + ADT soon.

I don't know if all 4.5 of the PSA is coming from this one lymph node, but we hope so. RT seems confident that targeting this node (and surrounding ones) could still be very effective along with ADT.

Still, I'm wondering why this was all missed on my original scans (including PSMA/PET) -- and then my pathology was negative negative margins yet the cancer popped up a little bit away from the prostate bed.

Crazy, eh?
Posted 11/9/2018 9:23 PM (GMT 0)
Unusual case. Thanks for sharing, and good luck!
Posted 11/9/2018 9:32 PM (GMT 0)
Well, it's worth a try.

Here's hoping that works.
Posted 11/10/2018 11:01 PM (GMT 0)
Thanks InTheShop. I received a helpful call from my team last night. Upon second review of the pre-surgery trial galladium PSMA/PET MRI they did see some uptake in a pelvic lymph node(s), confirming this week's Axumin CT scan. I guess that since the PSMA/PET was a trial it might not have been too rigorously reviewed prior to my RALP.

Anyway, my surgeon doesn't think he can get to these lymph nodes via surgery, so the recommendations remain for RT+ ADT. He also thinks it is worth a shot since they haven't found any sign of cancer elsewhere. At the same time he's a bit skeptical the RT will get it all since my post-surgery PSA is so high (4.5), despite the negative margin pathology.

Anyone know if just 1 or 2 lymph nodes can throw off that high of a PSA?

I have a second opinion appointment at UCSF in 3 weeks, so hoping to have their input on this before starting RT. Thanks again, all.
Posted 11/10/2018 11:58 PM (GMT 0)
4.5 PSA is a significant tumor load. Of course you don’t know if it is in one spot or all spread out. Clearly ADT for anything systemic and RT in a Hail Mary if it is still local. Do both and time will tell. Are they radiating the pelvic nodes?
Posted 11/11/2018 1:22 AM (GMT 0)
Hi JNF - yes, the plan is to radiate the pelvic lymph nodes since it is the only area of cancer detected in the PET/PSMA and Auximin scans. Hoping it’s all coming from this one spot, but like you say only time will tell.
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