Update re husband w detectable PSA (post RALP)

Brief history:

DH had RALP in August 2014. All subsequent uPSA tests were <0.03--until June when we lost the "<"
June 2020 uPSA =0.05
July 2020 uPSA =0.06

We recently met with DH's local urologist/oncologist who said, essentially, that "it's likely disease recurrence" but, of course, he can't say one way or the other right now.

According to him, the definition of BCR is 0.2. Ideally he'd want DH to have salvage radiation before then--usually around 0.1. He said you don't want to wait too long (ie > 0.3) Doubling time will matter as it's clearly doubled in the last year but we need more data points.

He is recommending that DH test again in October and January, and meet again in January. (The January test and meeting assumes that October's test isn't too high.)

He is not recommending any scans at this time. He thinks DH's PSA is too low for anything to show up.

He is not recommending a genomic test such as Decipher because he thinks it won't really provide any additional info.

Curiously, when I mentioned PORTOS and whether we could use that test to predict radioresistance to salvage radiation, he didn't know what I was talking about. If I understood him correctly, he said that there's no way to predict radio sensitivity for prostate cancer. Is PORTOS an established thing? Maybe I didn't express myself clearly?

When we asked whether we should meet with an RO now, he didn't think there was any urgency to do that.

On the surface at least, it seems that this is now "just" a matter of waiting. OTOH, a friend thinks that waiting until October is BS. (His words.) He's urging us to get a second opinion but I'm not sure what the options would be.

As for meeting with an RO, I'd rather meet with someone now, when there's time. I really don't want to put off everything and then feel rushed if the PSA continues to rise. (And if it were me, I would want the genomic testing and possibly even a scan. I like more info.)

Any thoughts or advice?

Post Edited (Melaine) : 9/3/2020 5:14:21 PM (GMT-6)

Melaine, I don't know anything about Portos, but I personally would be looking for a RO that works or specializes in PCa so when and if the time comes you will be ready to go. Wait for the next 3 month check and then proceed from there hopefully no further treatment will be necessary. JMHO

Larry

I like the idea of doing your "due diligence" now, and getting your medical team players selected, at least.

Having an initial consultation, when the time is right, is the beginning ...

You are doing your research, you are being proactive, you are being supportive ---- you are staying RIGHT ON TOP of things --- tremendous!

Sending encouragement, support --- camaraderie abounds HERE!

CYCLONE ~~~ # Iowa State University

I am 5 year out from SRT. I had RALP in 2007. When my psa reached .06 in 2015, my urologist said time to do SRT. I met with RO and she agreed. All psa readings since SRT have been <.006.
RO said I think you are done! Good luck and God bless you and your husband.

Melaine,

I am getting in same boat as your DH. Could you help me with a couple questions about his history--it will help me. I have copy pasted some of his info from your 7/30 post, the pathology part but not Bx, to make this more helpful:

----------------------------------------------------------------------------------------------------------
Pre-op imaging: bone scan clean; MRI shows lesion as 1.1 cm in left base
Robotic RP in 2014: still 3+4=7
Moderately involved, bilaterally, 25%
-EPE; -SVI; +PNI; (intraprostatic); -Lymph node (only 1 LN tested)
Focally positive left posterior mid and superior pseudocapsular resection margin
----------------------------------------------------------------------------------------------------------

Your husband is about 56 now?

Curious about the 1 LN tested. Was that because of his low number of Bx core positive and clean bone scan prior?

The "(intraprostatic)" you show there - that's where the surgeon "nicked into" part of the prostate, and tumor happened to be there, right? That's what happened to me, too.

The "superior pseudocapsular" means the fibrous muscle surrounding prostate?

Did you get a second path done? Did it match the first pretty well?

By any chance, did the pathologist(s) grade the Gleason number right at each of those two positive margins? If so, what were the grades at those margins?

Reason I ask is to help me understand this topic of margins and because there are some recent studies out showing the margins' GG does seem to matter in BCR, freedom from progressing to systemic, and long term cancer-specific survival.

Thanks a lot.
Robert

DjinTonic said...
I believe the "intraprostatic" refers to the PNI (perineural invasion

Yeah, that could be it.

Reason I asked was Epstein specifically noted on my one margin: "Right lateral margin focally involved by prostatic adenocarcinoma, Gleason score 3 + 3 = 6, (3mm, intraprostatic incision)". So I guess it's something pathologists deem worthy to report.

So was wondering if Melaine's DH had a similar situation. He is apparently much younger than I (56? vs 71), so probably more important in his case that he get timing right on SRT, if indeed he does not plateau and decides to go for it. He has more life left to either "wait out" recurrence, etc. via "watchful waiting", for one path chosen, or deal with possible SEs for the other path (SRT), if that's chosen.

Tough choices all around.

Robert

Looks like it could be both to me. EPE vs. positive margin is easy to describe when the entire intact prostate is available. If there is any cut into the prostate, anything that happens past that point has to be inferred. It is always worse when the incision cuts through the actual lesion since the actual boundary of the “cancer” is indeterminate. This is typically referred to as positive “for cancer cells at incision” margin as I understand it.

The statement “Focally positive left posterior mid and superior pseudocapsular resection margin” seems to indicate cancer cells at surgical margin at one location so would seem to be a risk factor of cancer cells left behind. Whether this is a big deal or not is always hard to know but always better to not have that listed on report.

Hi all,

Sorry for the late reply. For some reason I did not get notifications that others had replied--and I've been away from the board. I thank you all for your replies. And for those of you who have already had SRT, I wish you continued undetectables.

We've asked DH's urologist for recommendations for an RO or two. We plan to meet and discuss options, and form a possible SRT plan if and when that time comes. DH doesn't want unnecessary RT especially with a history of ulcerative colitis.

Bobbiesan/Robert: I'm sorry you find yourself in this same boat. It's a scary place to be but it sounds like you're doing your research which is good. I've copied and pasted your questions. The answers, unfortunately, are not that straight-forward. Some others on this board have heard bits & pieces of DH's history before; sorry to be repetitive.

****

Your husband is about 56 now? Yes, he'll be 57 next month.

Curious about the 1 LN tested. Was that because of his low number of Bx core positive and clean bone scan prior?
We thought and expected the surgeon to do a lymph node dissection. It turns out that this particular surgeon only samples one lymph node per side--and it was hastily done. What he took out on the left side was only adipose tissue--no lymph tissue identified. We never asked specifics about the anticipated dissection before surgery; we learned a valuable lesson the hard way. (Update: DH reminded me that we HAD discussed LN dissection w our surgeon. He nevertheless took only one LN from each side. Also, although the pathology report says that no LN tissue could be grossly identified (on the left side), our new uro has assured us that there should indeed be LN tissue on the slides. So that’s my mistaken interpretation of the pathology report.)
(Update as of Oct. 25, 2021: Apparently my interpretation was not wrong after all. Most of DH's doctors agree that that one slide was adipose tissue only, no lymph node. It would be really great if the doctors could agree on things.)

The "(intraprostatic)" you show there - that's where the surgeon "nicked into" part of the prostate, and tumor happened to be there, right? That's what happened to me, too.
I always thought that this was referring to the PNI as Djin commented above.

The "superior pseudocapsular" means the fibrous muscle surrounding prostate?
Ah, great question. There is no true capsule as I understand it. So, yes, it refers to the fibrous muscle.

Did you get a second path done? Did it match the first pretty well?
Ah, another great question and source of great frustration. We had Epstein at Johns Hopkins give a 2nd opinion. His pathology report said that the margins are negative. That would be good news--but it's not clear that he saw all the slides.

By any chance, did the pathologist(s) grade the Gleason number right at each of those two positive margins? If so, what were the grades at those margins?
No, that was not done as far as I know. But I wish it had been. (Kind of hoping that, as Prato suggests, the RO requests the slides and we get a 3rd opinion.)

Reason I ask is to help me understand this topic of margins and because there are some recent studies out showing the margins' GG does seem to matter in BCR, freedom from progressing to systemic, and long term cancer-specific survival. I'd be very interested in seeing the studies.

****

We still don't know whether DH's margins were positive or not. His surgeon's office first said that the margins were negative; but that was contradicted by the actual pathology report. Subsequently the surgeon wrote two letters to DH's local doctor: one that said the margins were negative and one that said there were FIVE focally positive areas. When I contacted the surgeon for clarification, he never replied. (Why did he say there were five? I guess we'll never know.)

Then Epstein said the margins were negative but we're not sure he got all the slides. (His report says he reviewed 17 slides; surgical hospital had 27 slides according to their pathologist's report. Now there are 32 slides?) (A recent call to Lenox Hill pathology just added to the confusion. When I quoted their pathology report, they said they didn't see any language about a focally positive margin and that I must be talking about a different case!)

Six years ago I was deep into this research. I pestered everyone on this board about the nuances and definitions, etc., trying to make sense of the conflicting info. (At the time, we really didn't realize that the pathology report meant positive margins. Denial is a powerful thing.) Then I stopped seeking info because DH asked me to stand down. So I did, without getting all the answers. For six years it didn't seem important because the PSA tests kept coming back undetectable. And now it is important.

FWIW, DH's current urologist said that a positive margin at this point might be a helpful thing--because it might indicate that that is where the cancer is--in the prostate bed. With negative margins, you really have no idea where it is.

Also of note re the trigger for SRT, DH's PSA was really low when he was diagnosed. It was only 1.7 then, so I do worry that his kind of cancer throws off very little PSA. That might be yet another reason to have a lower SRT trigger--although DH's urologist didn't think the low PSA was relevant.

Thank for all your comments and advice. It's daunting and scary, but we'll get through it.

Post Edited (Melaine) : 10/25/2021 4:43:01 PM (GMT-6)

DH had RALP in August 2014. All subsequent uPSA tests were <0.03--until June when we lost the "<"
June 2020 uPSA =0.05
July 2020 uPSA =0.06

I would not consider it as recurrence. That is ultra sensitive PSA.
My results from same lab for past 2 years are either < 0.06 or 0.06.
My oncologist is every time saying: No worry about this results. See you in 6 months.
MK

Thanks for the links Djin and Robert. I will read them when I can--although I have to admit that every time I read about death risk it stops me cold.

MK1965: how much after your surgery did your PSA become detectable? It's very possible that your PSA is from benign prostate tissue that was left behind--especially if it is not doubling over time. DH's urologist thinks that it's unlikely to be benign tissue since nothing was detectable for almost 6 years.

****

We had a frustrating day regarding DH's treatment. I am not being overly dramatic when I say that there has been a miscommunication or mistake at almost every step of this journey and, unfortunately, it appears that the "miscommunications" continue.

We met with DH’s urologist/oncologist about 10 days ago regarding his rising PSA. At this meeting, the urologist came up with the plan that DH would test again in October and January. He didn't note any urgency about seeing an RO but also said that we could do that now, which is our preference. Five days ago DH asked the urologist for RO recommendations--and we didn't hear anything until today.

Today we see that the urologist has posted his notes from our meeting--and they are entirely different from what had been discussed. Nothing about testing again in October and January. Instead it says, among other things:

"There is a clear upward trend in Mr. ____'s PSA, and he did have positive margins at the time of prostatectomy. Generally I would suggest he go ahead with salvage radiation at this time."

WTH?!?!

DH is going to reply and point out that his summary is not at all what we had discussed. And then I think we're going to look for both an RO and a new urologist/oncologist. (This was DH's idea, and I support him.) As you can imagine, we're very frustrated and not feeling very trusting.

Thanks for letting me vent.

Post Edited (Melaine) : 8/21/2020 9:25:51 PM (GMT-6)

Hi Robert,

Thanks for the quick reply.

We are in Seattle. This urologist is with the University of Washington and Seattle Cancer Care Alliance which we believe is a leading research center. We’d like to stay with UW/SCCA—but only if we can find a good fit with another uro. Same with the RO.

To clarify about DH’s doubling time: we don’t know how quickly it’s doubling. He said that we know it doubled within the last year. A closer look at the testing dates/numbers
and I think we can conclude that it doubled sometime during the nine months between the last undetectable (<0.03) and July (=0.06). But it might be more or less quickly than that, right? We don’t really know whether the last undetectable was 0.029 or 0.007.

This uro originally said we need more data points before making a plan. Guess he changed his mind about that since now he’s saying to start SRT now.

Ah, so much for not having to rush to find an RO.

I think I may start another thread re finding a doctor. So far we seem to be pretty bad at it—and I hate these kinds of regrets. We’re both feeling a bit stunned.

FWIW , This is the study that was cited by the radiation oncologist and the width from Cleveland clinic showing that early salvage radiation is better. this is the study that was cited by the radiation oncologist and with from Cleveland clinic showing that early salvage radiation is better.It’s worth pointing out that 1, this is for men with adverse pathology and 2. in this case they are comparing what they call adjuvant radiation therapy to early salvage radiation therapy, and unlike what we think of as adjuvant radiation being performed soon after surgery, in this case it is defined as radiation given before PSA rises above .1. Early Salvage is defined as beginning between PSA of .1 and .5

https://jamanetwork.com/journals/jamaoncology/fullarticle/2670381