High Gleason, Low PSA

[mysticmini]

Just starting on this journey. Had TURP surgery in October for what was thought to be BPH, since PSA was only 1.0. Biopsy from TURP: Prostatic adenocarcinoma, Gleason score 4+5=9 (Grade Group 5), involving approximately 90% of submitted tissue. Focal mucinous features. Perineural invasion identified in this case. Intraductal carcinoma of the prostate identified. Had PSMA scan done at looks like it has spread to several lymph nodes in the pelvic region (but not to any organs/bones) Can anyone offer any experience or advice on best treatment options? None have been started yet. Also ATM gene found during genetic testing.

[Hidden]

Might be useful to set up an appointment with a really good Medical Oncologist. They may know a little more about intraductal, which is controversial and some pathologist don't put it on the report. To my knowledge, is not a separate variant of cancer, but just means it billows up through the ducts and therefore seems to spread more easily. Some have postulated that hormone therapy is not as good for it as chemo, but the MO would be more helpful at that. If you have the rare variant of mucinous, and not any of the others, I think (note I say "think" since I really do not know that much, just look at a lot of studies)think that would be a net positive, since it seems to have a better overall survival of any variant of PCa. It's the top green line in the graph on my icon

But it is really important to get set up with a good MO to set a course on your treatment.

Graph

[climb4blue in reply to Hidden]

Would you please post the link or DOI to the study associated with this kaplan meier curve hazard graph for overall survival for prostate cancer type?

[Hidden in reply to climb4blue]

i think i purchased it somewhere. Seems to have originated at Moffitt Cancer Center. You should be able to google:

Rare Histological Variants of Prostate Adenocarcinoma: A

National Cancer Database Analysis

Chandler Bronkema, Sohrab Arora, Akshay Sood, Deepansh Dalela, Jacob Keeley, Alex Borchert,

Lee Baumgarten, Craig G. Rogers, James O. Peabody, Mani Menon and Firas Abdollah

[climb4blue in reply to Hidden]

Thank you for your help. I was able to locate the retrospective study. Regards

[Echotango51]

Find a MO that deals only in PC, if you can.

[DMohr011]

Welcome to the club Mysticmini! The club no one wants to be a member of. What a kick in the balls this is, but you are not alone.

Sounds like we share similar traits with low PSA and a ductal type. I too thought my pissing problem was all about BPH. Well, surprise!

My doctor didn't fully realize the aggressive nature of my cancer. If your plumbing gets clogged again, i do not recommend a second TURP (self cath instead). They need to get on an aggressive treatment plan asap. TURP will delay radiation for 6 months. In my case, the cancer spread before they were to radiate. It wasn't suppose to, but that is the aggressive part we are dealing with. ADT ( zytiga + lupron ) was suppose to keep the cancer in check, but it failed for me in June and spread to a muscle, getting everyone's attention.

When this spread, they stopped the Zytiga and began Keytruda along with proton beam radiation in July - September was the original plan to radiate.

With your genetic results, Keytruda may be an option for you? Radiate or operate, do you have an option?

Going forward I am on a 6 week Keytruda treatment and Lupron shots/6 months. That is the plan for 2022. My last CT scan showed undetectable. A PSMA scan will be done next time.

Thats my experience anyway.

Dave

[mysticmini in reply to DMohr011]

Thanks Dave for the reply. Great to hear last CT scan showed undetectable! How have the side effects been with the various treatments? (other than the TURP, know all about that!)

[DMohr011 in reply to mysticmini]

The radiation side effects were not fun, pretty shitty, literally. Had to keep real close to the toilet. They slowly went away. Today, almost 6 months later, the radiation is still the gift that keeps giving, but not near as frequent. But they really had to zero in on my rectum, as the bitch tumor was attached to it. Lupron sucks. Keytruda, nothing major to report except thyroid adjustments.

[mysticmini in reply to DMohr011]

Was chemo an option for you?

[DMohr011 in reply to mysticmini]

No sir, just the Keytruda, and that was only b/c of my genetics. Lynch syndrome was my gift from mom. My PC is from that broken gene. Not from diet or lack of, not from environment, not from stress, not from too many exrays.

The only reason I say this, seems many do the blame game. Including my wife, she tries to blame my kayak fishing habit.!

Cheers!

[treedown in reply to DMohr011]

Really ? What's the logic behind your kayak fishing causing your cancer?

[DMohr011 in reply to treedown]

Too much sitting on my ass! That summer when symptoms first occurred we were camping for 6 weeks on a lake in Colorado. I fished it 1 or 2 times a day. She tried to correlate the two!

[treedown in reply to DMohr011]

I thought that about my work sitting at a desk as well, but seems less likely the more I learn. I ran all kinds of things like this through my head at first and even had feelings of guilt that I was the cause, for a very short time. I do believe our decisions play a role in how we age but I think cancer is a role of the dice thing. Everything that I considered a bad thing at the time is done by millions who do not get cancer. Just my opinion.

[Tommyemily in reply to DMohr011]

Sounds fishy !!

[Tall_Allen]

Intraductal (IDC-P) responds to treatments, but requires more intensive treatment. In your case, that would mean whole pelvic radiation with a brachytherapy boost to the prostate and 2 years of intensive hormone therapy including ADT and an advanced hormonal agent. There is a clinical trial that will restart soon that seems ideal:

clinicaltrials.gov/ct2/show...

Hopefully, that will be curative. You may want to extend the time after you start ADT but before you start radiation, to give tissues more time to heal.

I assume the ATM mutation is only on one gene, not two, otherwise you could not have radiation.

[mysticmini in reply to Tall_Allen]

Thanks Allen. Wondering what your thoughts are on chemo early on in treatment for highly aggressive cancer?

[Tall_Allen in reply to mysticmini]

It doesn't seem to have much effect if there are no distant metastases. But IDK haw IDC-P responds to it.

[TylexGP]

My PCA is similar to yours G9, Intraductal, with SVI and suspected EPE and a suspect Node and for good measure BRCA2 positive. PSA was 10.15 at the time of starting treatment. I started ADT with Firmagon + Abiraterone /Prednisone followed by every 3 month Lupron shots with Abiraterone /Prednisone. After aprox 12 weeks of ADT I underwent HDR Brachy therapy followed a month later by EBRT (25 treatments). Prior to HDR Brachytherapy PSA went from 10.15 to 0.35. Currently aprox 3 months out from EBRT and PSA continues to slowly decrease and as of two weeks ago was 0.11 ng/ml. Your mileage may vary, but just my experience to date. Do you research and make the best decision for you and don't look back. I wish you well and feel to reachout if you have additional questions regarding my treatment.

[pilot52]

Greetings , 5 years ago I was in the same boat. First great move to get a PSMA test. Second you may want to consider early intervention with Lu-177. I have a lot of experience with this and there may be certain centers that will administer this to you....Tagawa at Weill Cornell had a clinical trial set up for just this sitrep. Also I think now MD Anderson and UT Southwestern in Dallas. Maybe many more...easy stuff, I had to go to India...feel free to msg me and I will give you my number..to much to type...PSMA will be so instrumental in this as I had wide metastasis , bone ,nodes ect....now in great shape...Blue Skies,

[Cooolone]

The IDC-p part of PCa diagnosis is controversial... It was in my original biopsy/diagnosis and even though I'm a patient at the #2 PCa hospital here in the U.S. and with an EXCELLENT MO, when I brought it to the conversation, multiple times, it really wasn't a center of the focus or even dwelled upon!

Bottom line is all features, especially those considered adverse, are considered and put into the pot making your soup! There's not really one above others that anyone would allow to standout and change things. In your example, if they had focused entirely just on the PSA, it wouldn't be good?! Right!

The reason why IDC-p is controversial is that there haven't been many dedicated studies associated with it alone! But retrospectively, they have pulled those patients with it and their data out of other studies and noted they suffered more negatively as compared to others in the same protocols. But this is problematic as it cherry picks data from a study that was focusing on something else. So take that where it is coming from. As a consequence though, there is no direct therapy aligned with or just because IDC-p. You treat the greater of the whole, which is all the features together.

Getting to a Major Cancer Center and one of Excellence, will offer the best chance for curative therapy, the best access to cutting edge diagnosis, treatment, testing and care. This along with access to possible trials, etc. Don't skimp and travel if you must! They actually did a study which showed those Oncologist with the most experience had patient that enjoyed the better results and satisfaction from therapy. Meaning, those with the most experience WIN! Local facilities, no offense, can't compete (IMO). As noted, with the lymphatic system involved, I can only see Radiation and Hormonal therapy being used in a curative attempt as first line therapy.

Best Regards

[j-o-h-n]

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j-o-h-n Wednesday 12/22/2021 7:34 PM EST

[j-o-h-n]

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