Long Strange Journey

[Guitarwolf]

I was diagnosed with Prostate cancer in July 2020. PSA of 35 and Gleason score of 8. Second opinion from Johns Hopkins indicated a g score of 6. My local utility's pathologist agreed after reexamination. How can my PS A be a 35 and my Gleason be 6? Just finished 5 1/2 weeks of external radiation and continue to receive 2 years of 4 month Lupron shots.

[LearnAll]

You may have prostate infection/inflammation. Do Not buy the b*crap of prostate cancer until and unless it is firmly established that you do not have prostatitis. You might require months of antibiotic treatment with meds like doxycycline, ciproflox, etc. Please find a good doctor who knows how to treat prostatitis and save yourself from hasty wrong diagnosis of prostate cancer which can push you into very harmful treatments like ADT etc. Gleason 6 does not spread...you have enough time..so relax and try to find what is causing rise in PSA (other than PCa) Dont forget,,,these are shops which would like to sell as many treatments as you want to buy due to your irrational fear of impending death. PCa makes good business. Monitoring PSA every 2 to 3 weeks is necessary to see trend while on antibiotics.

I would like to share my Gleason experience. My local hospital pathologist gave Gleason Grade 3+4=7. I sent slides to a very well known center of excellence. It came out as 4+5=9 ,

Then, I sent the same slides overseas to an independent pathologist , it again was 3+4=7 and then, it was reconfirmed by my local pathologist as 3+4=7

In the past, lots of men lost their prostate to surgery on suspicion of prostate cancer. There is even a book about this named "the prostate snatchers"

Note: Not a prescription. .just an opinion from me)

[Guitarwolf in reply to LearnAll]

Thank you Learnall. Johns Hopkins definitely ID cancer. Although G score 6. My oncologist and Urologist state that the PSA of 35 was concerning enough to treat with radiation and ADT. Just finished Radiation. This course of treatment was also recommended by JH as well.

[Magnus1964]

Your Gleason score doesn't change. Radiation can cause irritations that can increase your PSA.

[Tall_Allen]

Several possible reasons:1) The biopsy cores missed the higher grade cancer

2) Your bone scan/CT wasn't sensitive enough

3) High PSA caused by prostatitis - sometimes the pathologist notes acute or chronic inflammation. Often there is a PSA see-saw pattern.

[Guitarwolf in reply to Tall_Allen]

Yeah. My radio oncologist did say that the biopsy may have missed something. Although I had 6 of 12 cores positive but a clean Axumin pet scan. Kind of confusing.

[Tall_Allen in reply to Guitarwolf]

Axumin can't detect tumors smaller than about 4 mm.

[maley2711 in reply to Tall_Allen]

Ga-PSMA scan?

[Tall_Allen in reply to maley2711]

Maybe, but same size limit of detection. PSMA PETs are able to detect more metastases at a lower PSA.

[maley2711 in reply to Tall_Allen]

Allen...thanks for confirming....somewhere in this forum or another I've seen a chart comparing PSA ranges, detection rates, etc for different imaging modalities....maybe you posted?

[Tall_Allen in reply to maley2711]

At the end:prostatecancer.news/2016/12...

[maley2711 in reply to Tall_Allen]

prostatecancer.news/2016/12....

page does not exist? Thanks for the lead though. Is it working in your browser?

[maley2711 in reply to Tall_Allen]

Sorry Allen..tried again, and this time...success. Thanks MUCHO !

[maley2711 in reply to Tall_Allen]

Axumin superior to prostate MRI???

[dhccpa in reply to maley2711]

Good question.

[Schwah in reply to Guitarwolf]

That’s what happened to me. I did a 14 needle random biopsy and one of the cores came back at a Gleason 3/4 equals seven. I sent it to Epstein at John Hopkins who said it was not even cancer but rather pre-cancerous. Later, I did an MRI guided three needle biopsy. All three came back Gleason eight, Confirmed as 8 by Epstein. Zero for 14 verses three for three. Was yours a random biopsy or an MRI guided biopsy? Schwah

[maley2711 in reply to Schwah]

This is exactly why the standard random biopsy is old school, and all the data suggest that men are best served by 1st having an mRI, and if a concerninglesion is found, then a combo targeted plus standard biopsy in one session......one and done. Latest AUA guidance suggests that protocol, and many other countries have moved in that direction, I guess our insurers are influencing things here?

[Guitarwolf in reply to Schwah]

TRUS biopsy

[Guitarwolf in reply to Schwah]

It was a trans rectal ultra sound biopsy. 12 cores taken 6 positve G score 8 JOHNS Hopkins down grade to a 6. 4

[noahware]

The good news is that a true G-6 is highly unlikely to be lethal. The bad news is that a single biopsy might not get a sample of the worst cancer, and the actual Gleason score is indeed higher. (But I do not recommend removing your prostate to find out for sure!)

The high PSA score is indeed a concern and suggests higher grade cancer MIGHT be present, but did the docs confirm that you did not have a seriously inflamed/enlarged prostate, as LearnAll wondered? Any symptoms? Also curious if you had prior PSA testing before that 35 number, and what those readings were.

My PSA rise of 20 to about 30 in less than a year (with G 3+4) made mets seem likely, and bone scan confirmed they were there. No symptoms, no enlarged prostate.

[Guitarwolf]

My family physician was one of those that did not believe that PS A screenings were valuable. I requested as PS A TEST for several years and he talked me out of it each time. The 35 number was the result of my first ever screening. Other than slight enlargement, I had no other signs of problems during DRE's.

[drmoose]

In any case seems you made your choice - the radiation is done, so your prostate is "fried". Key for the future imho is the ADT / Lupron. If you really had only Gleason 6, and no signs of mets, you could (arguably) shorten the ADT. But that is for sure a non-trivial decision and requires consulting with the experts. But get second - or third or fourth - opinions.

You could do a more sensitive test for mets with a PSMA PET-CT (I believe it is better than the Axumin scan?) but can still miss small mets. Available in Europe, and limited availability in the U.S. currently.

And I guess your PSA development over the coming months will be critical, as you respond to the RT. If the PSA nadir is not good enough, it raises suspicion of missed PCa or mets.

Did you start the Lupron before the RT? it is often started 2 months before RT to increase the effects. Ask your doc when he expects to be able to meaure your PSA nadir....

[maley2711 in reply to drmoose]

Does ADT before radiation impact the effectiveness of ADT down the road.....when sometime after initial ADT and radiation, there is a rising PSA and ADT would typically be advised?

[RonnyBaby in reply to maley2711]

ADT has a time based relationship (cause / effect) that cna have long(er) terms effects.

The number of year isn't etched in stone, but 'continuous' use affects the body's ability of ever getting a 'full' recovery (ability to make testosterone). That number is often quoted as 2+ years - and it depends on your age and a few other factors.

LESS than 2 years and you 'should' be able to recover your 'T'.

There is also the concept of cycling on ADT - intermittent use - but that depends on thr staging.

As an example, I had about 16 months of ADT and the maximum radiation to the prostate and a lesser amount to the pelvic region (Node positive at Dx and a G9)

Today, after a 2 1/2 year ADT vacation,I am fully back to 'normal', although I have had a BCR and will resume treatment (probably ADT - hopefully cycling again) after my PSMA/PET scan is done in a few months.

In the meantime, there is no panic. My PSA is 'probably' around 6, based on recent trends and a time line projection.

I will probably get closer to '10' before I resume treatment.

From Dx to re-treatment - about 4 years .....

[Guitarwolf in reply to drmoose]

Thank you Drmoose. 1st Lupron shot was 1 month before RT

[Guitarwolf in reply to Guitarwolf]

Correction: 1st Lipton shot was 8/17 ST started 10/5

[dac500]

I was diagnosed in 2011 with Gleason 3 + 3 with PSA of 3.4. I had brachytherapy, which should have eliminated my low grade low volume cancer. But my can cancer came back with a vengeance. I had extra-capsular recurrence in 2016 and abdominal and pelvic lymph node metastasis (PET/CT scan, about 10 nodes, one node biopsied positive) It appears that the first biopsy missed a higher grade cancer that was not killed by the seeds.

My personal opinion is that you should have a MRI guided biopsy.

[drmoose in reply to dac500]

I agree. My current "favorite" approach is to

1) track PSA, earlier rather than later depending on family history

2) any concerns (rising PSA, DRE, etc.) do a GOOD 3T mp-MRI, get PIRADS score (v2.1)

3) If PIRADS score and imaging is concerning, several options

- get a PSMA PET-CT

-get an MRI-guided biopsy with Gleason scoring from local pathologist and second opinion from Johns Hopkins (or equivalent).

Then you have a basis to start to figure this all out.

Issues are: PSMA PET-CT may be difficult to arrange, same for MRI-guided biopsy (there may be good arguments that an ultrasound-guided MRI is okay).

And in the end, you still may not have full clarity. But better (imho) than a random biopsy and Gleason scoring from one pathologist.

I personally wish I had done a 3T mp-MRI earlier (but it has also been readily available only for the last few years or so). If no findings, it provides a baseline for the future and is a reasonable investment. Relative low-cost lower-risk investment to minimize the chances of requiring an RT or RP.

And these diagnostic will (probably and hopefully) be rapidly improved or replaced with better alternatives in the next 5-10 years.

A "good" mp-MRI means finding a radiologist who has read >200 pelvic MRIs for PCa (500 better) and does at least 2-3 per week, and has a relatively new 3T machine, with relatively updated software. Even better if they are willing to review the images with you personally for 30 minutes t help with your understanding (I am still searching for this optimum radiologist particularly around Zurich, so if anyone has hints to the best MRI centers for PCa please post).

[j-o-h-n]

Greetings G W, Between strumming your guitar in church would you:

Please tell us your bio. Age? Location? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!

All info is voluntary, but it helps us help you and helps us too. If you do respond copy and paste it in your home page for your use and for other members’ reference.

P.S. I know why you play the guitar in church... this way you're busy when they come around with the collection plate. GMTA

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/23/2020 12:30 PM EST