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-   -   How dire is this path report. Gleason 5+4 (https://www.healthboards.com/boards/cancer-prostate/1052272-how-dire-path-report-gleason-5-4-a.html)

Prostatefree 06-19-2021 06:30 AM

Re: How dire is this path report. Gleason 5+4
 
Debulking surgery is a cancer treatment strategy. Your young age, general health and natural life expectancy, local tumor extent, and the genetic aggressiveness of the cancer will be factors to consider imo.

Major life insurance companies have good monograms for calculating life expectancy. Mine came in at 88 years.

Extensive removal of lymph nodes can have side effects.

DjinTonic 06-19-2021 08:20 AM

Re: How dire is this path report. Gleason 5+4
 
I am not at all surprised that RP was advised as a primary-treatment option.

When the cancer is either prostate-confined or[i] locally[/i] advanced (as your imaging would indicate), surgery for high-grade men is done with what is termed "curative intent." It is possible that removing the prostate and a number of nodes removes all the cancer.

As I wrote above, adjuvant therapy may needed to complete your primary treatment because of an adverse finding in the path report and/or persistent PSA following surgery. If any of the removed nodes are confirmed to be positive, adjuvant therapy will likely be recommended.

There is also a decent chance that your definitive (post-op) Gleason score will be downgraded to G8 (4+5) for a number of reasons. Very briefly, (1) pattern prevalence is 3 > 4 > 5. (2) Pattern (4+5)+ is [i]much[/i] more common than (5+4). (3) About 32% of men who are G9-10 on biopsy are downgraded after the whole prostate is examined. (4) When there are two different patterns in the biopsied tissue, is basically hit-or-miss whether the predominant pattern in the small amount of biopsied tumor is the same as the predominant pattern in all the tumor prostate-wide. If spread to the lymph nodes is confirmed, however, the actual Gleason score is not that important.


Djin

IADT3since2000 06-20-2021 01:06 PM

Re: How dire is this path report. Gleason 5+4
 
Hi again John,

Let me make the case for radiation for your Gleason 9 case, hopefully truly 4+5=9, but still Gleason 9, and that is what really counts. You wrote:

[QUOTE=john_ct1;5511556]I just meet with the top Urologist at UPENN (Dr. Guzzo) for a 2nd opinion. He recommend an RP with extensive lymph node removal.[/QUOTE]

It looks like you have the kind of surgeon who would give you the best chance if you choose surgery, but it still looks to me like surgery is a really risky path for someone with your case characteristics that are already known – mainly Gleason 9 plus a positive lymph node detected by a rather insensitive test, meaning there is a good chance of smaller undetected spots that have spread. If it were me in your shoes, I would insist on one of the powerful, accurate fairly new scans to give strong assurance that extensive lymph node removal was a good bet or make clear that it was a poor bet to be avoided.

Three major problems come to mind with surgery with extensive lymph node dissection for a Gleason 9 patient:

First, while surgery does cure a small proportion of men with Gleason 9 cancer, it clearly cures fewer than with up-front radiation, and that remains true even when later salvage radiation is added to the surgery – still inferior by a hefty percentage to up-front radiation. Years ago Johns Hopkins did a study from it’s massive data base of surgery patients that included a portion of high-risk patients. Generally, most high-risk patients faced recurrences, and the Gleason 8 patients were clearly more successful than Gleason 9 patients. Take a look at the success graphs for high-risk patients at https://prostatecancerfree.org/compare-prostate-cancer-treatments-high-risk/ .So this first point is about odds, based on multiple research studies.

Second: with surgery first, there is a strong likelihood of side effects from two therapies plus from their combination. With radiation/ADT first, patients will typically have a pretty tolerable profile of side effects long-term, as is usually true also with surgery alone. However, there is a high likelihood that Gleason 9 patients who have surgery first will have some lasting side effects from surgery, some lasting side effects from radiation/ADT that is usually needed (either adjuvant or salvage) , and some that would have been minor but escalate to more bothersome because there is radiation/ADT on top of surgery.

[B][I]Third, and most important, the adjuvant or salvage radiation that such a high proportion of up-front surgery patients who have Gleason 9 cancer need is necessarily delayed by surgery due to the highly advisable recovery period before radiation! This is dangerous because of the nature of Gleason 9 cancer – for most patients, it likes to spread and does it rather quickly![/I][/B] An outcome for a patient like you will be a cure [I]IF[/I] the cancer is truly confined except for lymph nodes that are also removed. But the likelihood for Gleason 9 cases is that there will be nodes or other metastatic locations that are not removed by surgery, and during the recovery period those spots will continue to grow larger and also to seed additional metastatic spots, kind of like a dandelion seed cluster that is not removed and releases its seeds in the wind. (In contrast, this is NOT a likely scenario for lower-risk cases, such as intermediate-risk prostate cancer believed to be confined, where surgery is more likely to be curative, more on an equal footing with radiation.)

All this said, it’s your decision, of course, and some patients, like DjinTonic, do well with the surgery first (and hopefully only) approach.
[QUOTE=john_ct1;5511556]My regular Urologist discounted surgery and recommend Radiation plus ADT (actully got my 1st ATP shot on Wednesday - Firmagon).[/QUOTE]

The three points above are probably prominent in his thinking.

[QUOTE=john_ct1;5511556] The UPENN doc said surgery will give me the best flexibility going forward. [/QUOTE]

Usually surgeons mean by “flexibility” that you can still have radiation later if you need it. What they too often do not seem to say is that here is a strong likelihood Gleason 9 patients will need it, and that in the meantime – the period before follow-up radiation is feasible – a Gleason 9 cancer can spread beyond the range of pelvic radiation, and it may also have had time to progress to the “explosive” stage where there are many widely spread distant metastases, which is an extremely challenging and dangerous situation. I am not at all fond of that “flexibility” line of thought for a high-risk patient.

One final thought about extensive lymph node removal, which would be needed in your case per the UPENN urologist: edema is an unpleasant possible complication worth considering, as are several other complications. Here’s a link to an abstract of a clinical trial about this: https://pubmed.ncbi.nlm.nih.gov/12478123/ Below the abstract other pertinent papers are listed. My impression the risk, while fairly low, is still well above zero. In contrast, radiation will knock out the cancer in the nodes while preserving healthy tissue and their normal function, as I understand it as a layman.


….Jim

[SIZE="1"]- - - - - - - - - - - - - - - - - - - - - - - -
21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.[/SIZE]

DjinTonic 06-20-2021 01:56 PM

Re: How dire is this path report. Gleason 5+4
 
The graph at Jim's link

https://prostatecancerfree.org/compare-prostate-cancer-treatments-high-risk/

uses data from [b]studies that do not look at overall survival, cancer-free survival, or even metastasis-free survival[/b], but rather BCR (biochemical recurrence, a return of a rising PSA, over 0.2 for post-RP patients or 2.0 over the post-radiation nadir for post-RT patients. Leading radiologists are now saying that BCR is a poor outcome measure for RT studies. The problem for newer modalities like EBRT+brachy boost is that there aren't long-term survival stats.

[b]When I click below the high-risk graph Jim touts and hide all but RP+EBRT, I am left with a single study![/b]

Most who have BCR do no go on to clinical recurrence. Studies in the past few years have shown overall survival for RP/RP+RT is the same or better than RT for high-grade disease that is confined or locally advanced.

You will be advised to have RT after your surgery if warranted. Personally, I would worry about Gleason pattern 5 after RT. For quite a while after RT you don't what's going on because your PSA is slowly falling, whereas PSA after RP is an exquisite window on remaining PCa if you don't need RT after surgery.

The toxicities for EBRT + brachy boost are higher than EBRT alone. If you have the worst (locally advanced) cancer imaginable, I would want RP+RT rather than RT alone. If your PCa is advanced and no longer locally advanced, the discussion changes.

Djin

IADT3since2000 06-21-2021 05:35 AM

Re: How dire is this path report. Gleason 5+4
 
Good morning John and Djin,

I did not realize that the RP + EBRT data in the graph I mentioned were from just one study, as Djin pointed out in post #44. I have looked up that study.

I am rethinking the point about odds based on that study and a point Djin made months ago that you really need to add high-risk men who had RPs and did not need radiation to the success rate when you are considering RP + radiation/ADT if needed. Also, that one study was from 2012, and data at clinicaltrials.gov make clear that the radiation technology used is now quite obsolete, so results would no doubt be better today.

I'm part way through thinking this through and am looking forward to discussion, but it is clear that the odds are going to be better than the odds of success posted in that one study (Bolla, 2012).

….Jim

- - - - - - - - - - - - - - - - - - - - - - - -
21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.

john_ct1 06-21-2021 05:58 AM

Re: How dire is this path report. Gleason 5+4
 
Thanks Jim and Djin for the feedback. The science is sure not easy to decipher. I just hope I can be kept alive long enough, and with a decent QoL, for new breakthrough treatments to come along. Not necessarily a "cure" but something to keep this in remission with decent QoL.

-John

DjinTonic 06-21-2021 06:30 AM

Re: How dire is this path report. Gleason 5+4
 
John, stay positive! Have you had any imaging or other testing done since your initial MRI?

If you can create a signature it will be of immense help to all. You won't have to keep repeating information and those replying will be able to focus on the information relevant for your status, instead of trying to cover all eventualities. Have a look at other Forum brothers' signatures for example of what to include.

Thanks,

Djin

john_ct1 06-21-2021 06:47 AM

Re: How dire is this path report. Gleason 5+4
 
Good idea about the Signature. I'll work on that.
I've only had a Bone and CT Scan, no MRI. Is an MRI required prior to the RP. The urologist never mentioned it.

DjinTonic 06-21-2021 07:08 AM

Re: How dire is this path report. Gleason 5+4
 
[QUOTE=john_ct1;5511592]Good idea about the Signature. I'll work on that.
I've only had a Bone and CT Scan, no MRI. Is an MRI required prior to the RP. The urologist never mentioned it.[/QUOTE]


Not, not if a CT was done. Did the CT show any indications that cancer had spread out of the prostate?

If you have chosen surgery, it pays to be optimistic. I was lucky and you could be too. As I mentioned, if there are no adverse findings in the post-op path report that the cancer has spread out from the prostate, and your PSA is undetectable, your treatment will stop there and you'll be in the same waiting mode we are [i]all[/i] in are after any PCa treatment. We say we are recurrence-free, rather than cured, unless otherwise found. As the years go by, the chances of recurrence eventually go to almost zero.

If there is local spread, or you your post-op PSA isn't undectable, RT will complete your treatment before starting the waiting game.

Djin

john_ct1 06-21-2021 07:14 AM

Re: How dire is this path report. Gleason 5+4
 
Yes, the CT found 1 pelvic lymph node that's diseased. 3cm x 2cm, quite large. No bone mat noted via a standard bone scan. Yes, I'm assuming RT and ADT after surgery.

DjinTonic 06-21-2021 07:39 AM

Re: How dire is this path report. Gleason 5+4
 
[QUOTE=john_ct1;5511595]Yes, the CT found 1 pelvic lymph node that's diseased. 3cm x 2cm, quite large. No bone mat noted via a standard bone scan. Yes, I'm assuming RT and ADT after surgery.[/QUOTE]

Sorry, now I remember. (This is why a signature helps so much.) Was enlargement of any other nodes noted? Unfortunately, the standard bone scan can only detect mets down to a certain size and, of course, is of no help with soft tissue. That's where the new generation of scans comes in.

Even when the PCa has spread to pelvic nodes or out of the prostate locally like in seminal vesicle invasion, it is still possible that surgery removes all of one's cancer. Just be mentally prepared that you may need radiation or, possibly, RT + ADT after healing from the RP. On the other hand, if there is no adverse finding of contiguous spread, only one node is found to be positive among all those removed, and there is no persistent PSA, you'll have the best possible outcome.

Discussion of post-RP therapy needs to wait for the surgery findings. Here, too, stay optimistic.

Your PSA is relatively low, which is good. Do you have a surgery date, John?



Djin

john_ct1 06-21-2021 07:55 AM

Re: How dire is this path report. Gleason 5+4
 
Djin,
Only that 1 node was nodes as suspicious. The surgeon basically said what you've stated. He'll remove a whole bunch of lymph node along with the usual bits. He'll monitor the PSA after surgery and go from there. I guess the post-op pathology report will have a lot to say about treatment(s) required after surgery.

Interestingly my original Urologist started me on Firmagon last Wednesday (I guess he assumed I was going for RT as the primary treatment...although he know I was going for an expert 2nd opinion). The surgeon on Friday said no harm. In my mind I see the Firmagon as possibly putting the brakes on the cancer until surgery in 2 weeks.

Thanks,

-John

DjinTonic 06-21-2021 08:46 AM

Re: How dire is this path report. Gleason 5+4
 
Yes, no harm done by neoadjuvant ADT (given prior to treatment, as is usually the case when RT is the primary treatment).

Something to put on the back burner is whether a Decipher test on your RP tissue may prove useful. The Decipher score itself is for the risk of mets within 5 years, but, assuming the large node is confirmed as positive, you know already know your PCa can metastasize. However, there is an option GRID report that you can request with the Decipher results. It has 0-100 scores for a panel of RNA markers and scores for the theoretical response of your PCa to one chemo drug (docetaxel), one immunotherapy drug (dasatinib), and the response to post-op RT (a score for how long you will likely remain castration-sensitive). Unlike the Decipher score itself, the GRID report has [i]not[/i] been clinically validated and is marked For research purposes and the reports states the results shouldn't be used for clinical decisions. However, if you and your doc are on the fence about, say, saying on ADT or, instead, seeing how your PSA does without it, the GRID report might be of help. Just a thought.

Djin

john_ct1 06-21-2021 10:31 AM

Re: How dire is this path report. Gleason 5+4
 
Just spoke with my local urologist and he doesn't agree with the 2nd opinion urologist's (Top guy @ UPENN) recommendation to do a RP. He said it won't buy me much but make side effects when later combined with adjuvant RT significantly worse. My local urologist was trained by the 2nd opinion uro so my local uro said he would call him to discuss my case. If long term outcomes are similar between RP+RT+ADT and RT+ADT then I'd obviously rather skip the surgery and it's trauma.

Prostatefree 06-21-2021 11:02 AM

Re: How dire is this path report. Gleason 5+4
 
That was my thinking, but in the other direction. If I can gain a cure with surgery and skip the trauma of radiation and ADT, I will.

DjinTonic 06-21-2021 12:36 PM

Re: How dire is this path report. Gleason 5+4
 
[QUOTE=john_ct1;5511600]Just spoke with my local urologist and he doesn't agree with the 2nd opinion urologist's (Top guy @ UPENN) recommendation to do a RP. He said it won't buy me much but make side effects when later combined with adjuvant RT significantly worse. My local urologist was trained by the 2nd opinion uro so my local uro said he would call him to discuss my case. If long term outcomes are similar between RP+RT+ADT and RT+ADT then I'd obviously rather skip the surgery and it's trauma.[/QUOTE]

See what the result of their pow-wow is. One difference between treatment routes is with RT for high-Gleason men, the treatment is EBRT plus brachy boost plus 2 year minimum of ADT upfront. With surgery, it's RP upfront, with RT and/or ADT decided afterward, along with the duration of ADT, if any. A decision for RT is perfectly valid and perfectly understandable. I am not saying I think the RP route is better. Two different men with identical statuses can make different choices. Of course the choice is yours, and even if both of these docs arrive at one recommendation, your are not bound by it.

Keep us posted, please.

Djin

Insanus 06-21-2021 01:56 PM

Re: How dire is this path report. Gleason 5+4
 
John,

With your current staging, there is no way I would opt for RT treatment without Brachytherapy.

Prostatefree 06-22-2021 05:55 AM

Re: How dire is this path report. Gleason 5+4
 
[QUOTE=john_ct1;5511600]Just spoke with my local urologist and he doesn't agree with the 2nd opinion urologist's (Top guy @ UPENN) recommendation to do a RP. He said it won't buy me much but make side effects when later combined with adjuvant RT significantly worse. My local urologist was trained by the 2nd opinion uro so my local uro said he would call him to discuss my case. If long term outcomes are similar between RP+RT+ADT and RT+ADT then I'd obviously rather skip the surgery and it's trauma.[/QUOTE]

Somebody help me with this please. Is this strategy acknowledging the treatment outcomes on the cure spectrum are similar, but does not include side effect outcomes?

I can't see how two years on ADT is in anyway similar to the long or short term side effects of surgery or radiation alone.

I understand not wanting to climb the treatment ladder of surgery, radiation, and ADT if the long term outcomes will be the same. Dismissing surgery because of [I]added[/I] [I]trauma[/I] is misleading. A choice here not to have surgery is acknowledging [I]now[/I] it has an unacceptably small possibility of a cure. Do we know enough to make that call now?

Even then, the value of the pathology of the organ itself and the suspicious lymph nodes may have a role to play in charting a path forward with the radiation and ADT.

I will suggest you follow up with the 2nd opinion doctor after your doctor's call. Do not rely solely on your urologist's interpretation of his call. No judgement of your urologist. He is human and confirmation bias is powerful.

john_ct1 06-22-2021 06:25 AM

Re: How dire is this path report. Gleason 5+4
 
[QUOTE=Prostatefree;5511617]Somebody help me with this please. Is this strategy acknowledging the treatment outcomes on the cure spectrum are similar, but does not include side effect outcomes?

I can't see how two years on ADT is in anyway similar to the long or short term side effects of surgery or radiation alone.

I understand not wanting to climb the treatment ladder of surgery, radiation, and ADT if the long term outcomes will be the same. Dismissing surgery because of [I]added[/I] trauma is misleading. A choice here not to have surgery is acknowledging [I]now[/I] it has an unacceptably small possibility of a cure. Do we know enough to make that call now?

Even then, the value of the pathology of the organ itself and the suspicious lymph nodes may have a role to play in charting a path forward with the radiation and ADT.

I will suggest you follow up with the 2nd opinion doctor after your doctor's call. Something always gets lost in the translation.[/QUOTE]

Yes it's clear as mud. There's so many variables involved. How is the layman patient supposed to make an optimal informed choice when the professionals can't come to a treatment consensus? For me the formula has to also include quality of life over quantity of life. Seems like a leap of faith / gut feeling has to play a part as well. A concern with the 2nd opinion Doc is how briefly he spent time reviewing my records and asking me questions. Seemed like he almost reflexively recommend surgery but stressed that it's my call. The local doc gave me a thoughtful argument against surgery with stats to back it up.

Prostatefree 06-22-2021 06:54 AM

Re: How dire is this path report. Gleason 5+4
 
My first reaction to your profile was RT. The possibility of starting with surgery and a cure caught my ear. You have effectively discredited your second opinion as unprofessional. Will you get another?


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