newly here, newly diagnosed, with velocity

Hi all -- as I've awaited more info from my MRI & Biopsy I've been lurking & reading and am grateful to have found this place and all the generously shared thoughts & information -- so I signed up.
I'm turning 65 on Saturday, my PSA went from 2.8 in Sept 2021 to 4.8 in Feb. '23. 2nd blood draw to confirm this shot up to 6, four weeks later.

I had a MRI on 4/3 & Transperineal biopsy 4/4 at Mayo Clinic Rochester, where I had oropharyngeal cancer excised in 2010 (all clear on that front.)

MRI says PIRADS 4, volume 28cc, PSA density 0.21
Lesion #1: 1.3 x 0.7 x 1.2 cm, 0.47cc
Left lateral at base, peripheral zone
T2WI score 4
Capsule: intact
Neurovascular bundle invasion: absent
Seminal vesicals invasion: absent
Other organ invation: absent
Lymph nodes: negative
Bones: negative

Biopsy
The right side had only one finding of note:
Right posterior lateral apex, needle core biopsy: High grade prostatic intraepithelial neoplasia

On the left side I had one G6 and three Grade Group 2 (Gleason Score 3+4=7). The latter all indicated that "Perineural invasion is present."

With my exponential PSA velocity, my history (oral cancer was very fast moving) and family history -- dad had prostatectomy in his mid-50's, mom had multiple cases of fast growing melanoma -- my primary concern is that my PCa is not "indolent". I'm meeting with the Mayo urologist / surgeon for the first time on Friday; still trying to find a radiation oncologist either in LA or at Mayo who can see me pronto -- soonest I've been able to get any appointment is three weeks out.

Secondary concern (after stayin' alive) is keepin' my dingus as fully operational as possible. My wife & I had a long slow descent into asexuality before the pandemic, but then I stopped my constant work-related travel & we spent a lot of quality time together. We discovered Viagra and re-discovered our love life, and have been rompin' like when we first met, back in our 20s. We really don't want that to go away again, at least not permanently.

Any thoughts appreciated!

Welcome Nels - Now is the time to settle down for the longer haul. The first couple of months are the toughest and there is no reason to be in a super hurry as prostate cancer is generally not in a hurry. Plenty of time to see doctors you need to see.

Your PSA can also be increased by other factors like what you did in the days right before the test. Your prostate density is a little high but the size is estimated from scans so not a real number (denominator) and can be significantly different if removed.

The concern about the cancer not being “indolent” is hard to estimate unless the pathology notes something different than the garden variety PCa. The only testing I can think of is a genomic analysis like Decipher that characterizes the “risk” of a cancer sample from the biopsy.

The concern about your new love life aided by Viagra is tough with prostate treatment as all treatments can have negative effects and the fact that you may be starting with a ED deficit makes it more likely you may have more after treatment. Have you had any urinary issues?

I think Dr. Tollefson is the well known surgical guy at Mayo-Rochester if that helps any. Most urologist surgeons will promote their specialty and the radiation oncologist(s) will promote their specialty(s). Have to see all of them to get the full picture of what may be best for you and your concerns.

Hi nels and Welcome!

"The latter all indicated that "Perineural invasion is present."

MRIs do not always give a true picture of local growth beyond the prostate. You may want to discuss the PNI finding with your docs. Most studies concluded that when PNI is seen at biopsy (rather than only after surgery), it increases the risk of there being adverse findings.

In addition to getting a 2nd pathology opinion on your biopsy before treatment, I would discuss having a Decipher test done (either after surgery if you choose RP, or before RT if your choose radiotherapy).

All the best,

Djin

Happy Birthday and welcome to Medicare. Choose your coverage options wisely given this new situation. PCa was also a birthday present for me with my dx coming just a week after I turned 60.

You have plenty of time to research and get a sufficient number of expert assessments. When diagnosed I saw three high volume surgeons, two different radiation oncologists and a medical oncologist that did a lot of PCa work before I made my well informed and measured decisions about treatment. In all it took just a few weeks to accomplish and was the absolute best thing I could have done. More than 12 years later I remain cancer free and free of any negative treatment induced side effects, all the important plumbing works very well.

Best wishes.

Nels, welcome.
You should absolutely positively send your slides to Johns Hopkins. Your Doctors office will likely know the logistics of this and at least when i did so, they sent the actual slides, maybe its digital now, but mine was only 8 yers ag0.. You may get an upgrade to a higher gleason score (hopeuflly not) or you may get a downgrade like i did. And either way it could change your choice of treatment.

I would also strongly recommend the Decipher test. Sometimes there is discordance between the Decipher result and the gleason score/grade group.

BTW If your Urologists office or his pathologist doesnt have the ability to send the slides to Johns Hopkins, here is a link for the form that you would submit to JH so they can request the slides for you.

https://pathology.jhu.edu/patient-care/second-opinions/send

Good luck and please do keep us posted

Nels. Also consider UCLA as they are a premier radiotherapy center. They will include High Dose Rate Brachytherapy which was pioneered by their emeritus head Dr Jeffrey Demanes, the pioneer developer of HDRBT. It is a preferred method of brachytherapy. Learn more at Demanes’ website www.cetmc.com.

I successfully used HDRBT after considering it and permanent seeds. HDRBT is technologically superior and was the choice of renowned tech pioneer Andy Grove when he successfully treated his PCa.

Hi guys
I appreciate everyone's comments & recommendations here. Circling back now after several consults: 2 uro surgeons & 2 radiation oncologists, at Cedars Sinai in LA and Mayo Clinic in Rochester.

And I've requested my biopsy slides be sent to Johns Hopkins for the "second assessment".

I've got one more surgeon to speak with at Mayo, week after next, but so far I've got quite the spectrum of suggested treatment options:

Surgeon @ Cedars suggested RALP or HIFU as primary treatment but casually tossed out that my risk of recurrence from either was 30-40%, in which case we'd do salvage RT.

RO there lobbied for 5 fractions of SBRT, or possibly HDR brachytherapy. Neither mentioned or recommended concurrent ADT / hormone treatments.

Uro / Surgeon I met at Mayo was sharp but pretty young -- only been a full fledged member of the team there for ~6 months. He was very clear that he felt focal therapy (e.g. HIFU) was not appropriate for my circumstances. Late in our discussion I asked him how many RALP procedures he'd done, and he smiled warmly and said "That's a great question. Hundreds." So of course I asked a follow-on: if you were to need a prostatectomy, who would you want to do it? Without hesitation he said, "Igor Frank." So naturally I asked for an introduction, which he's graciously arranged.

The RO I met with at Mayo is an eminent guy, been active there both in clinical & research for decades. He recommended Proton Beam RT, 3800 cGy in 5 treatments, and offered some statistics & studies that made it impossible to NOT want to do concurrent hormone treatment-- essentially showing that my risk of DM or recurrence would be cut in half by adding the ADT. He suggested short term / four-month duration leuprolide + 90-day bicalutamide.

The proton beam + ADT seems an excellent & thorough option but I'm still on the fence 50-50 on RALP vs. RT. I'm scheduled to speak with Dr. Frank @ Mayo, week after next -- he has been doing single-port "Retzius sparing" RALP which, if he indicates it's appropriate for me, would likely tilt me towards surgery as the SE are so much less severe.

Based on these inputs, only decision I've made so far is that I'll be doing my treatment at the Mayo.

As always I look forward to hearing from you guys who've been there, done that. I'm physically healthy, active & pretty fit (20+ yrs martial arts & I regularly ride a unicycle, among other exercise activities) so I think I'll tolerate & recover well from either treatment. My primary concern for SE is of course I'd prefer to avoid long term incontinence. Close second is that my wife & I would like to retain / resume our newly re-ignited love life that after my treatment, with the full expectation that we'll need to up my dose for the added ED challenges...

& yeah, whichever treatment I go with, I'll be off that uni for a while...

Nels

Post Edited (nels) : 5/10/2023 4:08:14 PM (GMT-8)

The surgery vs. radiation decision can be tough. I was very interested in proton beam technology but it was not proving out to be more effective than standard IMRT radiation and there were insurance issues. This was based on the usual 40+ treatments for both methods in 2018. I was also interested in surgery as it made the most sense to me. The offer to do proton beam in 5 treatments like SBRT is pretty neat and I would seriously consider it now. Seems to be a very good option with the precision of proton beam method. The short term ADT seems to be a good idea and most men seem to make it through the short term ADT fairly well so no long term effects would be expected.

Since you have had ED issues already, surgery would probably have adverse effects that no surgeon could solve. Surgery is no walk in the park so you have to plan on recovery taking a few months to get back to where you were before surgery, not sure about the unicycle though. Proton beam would be easier and wrapped up within a couple of weeks as outlined. Pick one and full speed ahead.

Ha, yep @centralPAdude, the unicycle is rather unique in its groin / saddle interface... but they've really improved the seat designs since I first started riding 50+ years ago. I generally only ride about a 3-4 mile stretch on a smooth bike path, which in addition to the wacky balancing act is a pretty awesome core & leg workout. I don't partake in the sport of "MUNI", or "mountain unicycling" where you'll find maniacs bouncing down single track on knobby-tired unis equipped with a disc brake. This is where you really find the people with groins of steel.

I've been looking into MRI-guided IMRT & MRI-linac. Seems like it's right up there with Proton beam as a next-gen RT treatment protocol.

@60Michael & @Mumbo, Thanks for support & input on RT options.

What appeals about the Proton treatment is the highly focused precision -- and that they also do real-time imaging for guidance. They'll place four carbon fiducials in the prostate as well as tattoo me for laser targets. My understanding is that the Proton energy is only released at the targeted distance / nodal point, so there's a significant reduction in collateral toxicity compared to x-ray energy. TBH the scariest part of that treatment option for me is the adjuvant ADT. I tend to run cool in my mood & energy, so further dialing down my "vim" and libido sounds like several months in a grim place. Thankfully my wife is a naturally ebullient person, and she's on board for keeping my mopey side at bay.

She's just turned 63 and bought her very first set of (pink suede) roller-skates just 2 years back, so we're the two old goofballs out there on the bike path: she skates, I'm on the 29" uni. In addition to the added ED component of surgery, having long months "out of the saddle" & away from our "play time" will be a factor in deciding which treatment approach I'll take on...

Hello again. I received my results from 2nd opinion @ Johns Hopkins; sorry the pasted text reads oddly / tiny:

GU PATHOLOGY CONSULTATION SERVICE Jonathan .I Epstein, M.D., Director.
Andres Matoso, M.D.
Tamara Lotan, M.D.
Ezra Baraban, M.D.

Diagnosis

1 Prostate (Needle Core Biopsy, SR-23-9384, 4/4/2023):

G. Benign prostatic tissue.
H. Benign prostatic tissue.
I. Small focus of prostatic adenocarcinoma, Gleason score 3+4=7 (Grade Group 2), involving less than 5% of one (1) core.
NOTE: The cancer is too small to accurately assign a percent of pattern 4.

J. Prostatic adenocarcinoma, Gleason score 3+4=7(Grade Group 2),irivolving 10% of one (1) core, 10% Gleason pattern 4
K. Prostatic adenocarcinoma, Gleason score 3+3=6(Grade Group 1), involving 10% of one (1) core.
L. Benign prostatic tissue.
M. Prostatic adenocarcinoma, Gleason score 3+4=7(Grade Group 2), involving three (3) cores (80%, 70%, discontinuously involving 20% of one core), 20% Gleason pattern 4.
The pattern 4 in this case lacks large cribriform morphology. Perineural invasion identified in this case.
__________________________________________________________________

This is almost identical / slightly less bad than my original report -- they indicate perineural invasion present in only one sample, whereas the first report indicated PNI in 2 samples.

In other news I had a video conference last week with another surgeon @Mayo Rochester: Igor Frank MD. This is my 3rd surgeon & I met with RO MDs at both Cedars & Mayo.

On further consideration of the RT options I'm not comfortable leaving a cooked ball of scar tissue in there -- the risk of recurrence is not close enough to zero for the idea of salvage surgery on a leathery wodge. Whether it's only one core or two with the PNI I'm a bit spooked that there's any at all. So I'm now inclined to go with surgery, and Dr. Frank indicated he'd do a single-port, pre-peritoneal "hood technique" which I believe is akin to the Retzius-sparing approach.

I like what I read about this approach for retaining / recovering continence & erectile function.

I'm a reasonably fit 65 y.o. and I'd rather have the big invasive intervention now, which I slowly recover from (hopefully with a skilled surgeon I'll get right back to baseline) as opposed to the more moderate up-front SE suite from Proton beam RT with its (possible? / likely?) slow onset of worsening continence & ED issues... And the capper is -- if I need salvage surgery after RT, it seems likely I'd be likely to have much more negative SE impact.

I'd appreciate any thoughts / advice. And I'd also like a primer on how to assemble my stats into a signature!

thanks,

nels

Post Edited (nels) : 5/29/2023 4:47:24 PM (GMT-8)

Heya centralPAdude thanks for the support. I accidently posted that before I finished with my update -- and I was trying to figure out how the text shifted to microprint, with no luck... So I edited / completed it after you replied!

Hi Larry thanks for the message. Yes your numbers are similar to mine, and your story is helpful for keeping my perspective & managing expectations. I am trying to be realistic about the recovery process -- I'm a bit older than you and don't expect to bounce back like a teenager. I'm pretty sure I'll go with the surgery. I'm lucky to have the options I have, and this all came exactly as I turned 65 so -- shout-out to Medicare. Mayo Clinic accepts it, and my $100 / month plan G supplement takes up the slack.

BTW I am a fervent all-season griller, cooking on a ceramic / charcoal BBQ. Just had wild mallard risotto tonight, from birds I grilled over mesquite (sear) & hickory (smolder.) What's your BBQ thing?

nels

Nels, I had RALP in February of 2015, with diagnosis and decision in December and January.
Pre-op, I made sure I was eating a healthy diet, I had 15-20 pounds on more than ideal, but they proved to be stubborn. I obtained a treadmill and walked on it for 20 minutes or more a day.

The goal is to walk and get your core as strong as you can, because that is where the invasion is coming.

You can read my 'diary' of sorts in the link in my signature file.

I was fortunate in my situation, I had a great outcome. I leaked a bit for several weeks, but moved on to thin shields by week 3, as I recall. I also had a spontaneous erection during the night about 3 weeks post surgery, and everything has been fine since.

All that being said, the recuperation and recovery process is incredibly individual. What I can say is that the surgery took a lot out of me. It was probably 5 or 6 months post surgery before I really felt good, where i was getting enough sleep, I felt strong and able to do pretty much everything I had done before.

I note that about 4 months after surgery, I took a trip that involved some time for travel, and I fell asleep while driving and had a bad wreck. I attribute at least some of the cause of that to the surgical recovery--I wasn't nearly as recovered as I thought I was.

I guess what I'm saying is that the combination of being the age we are, and the stress that surgery puts on us, means that it takes a while. Don't be surprised if afternoon naps become a thing for a while. That something that sounds simple like mowing the lawn exhausts you. That the prospect of climbing a single flight of stairs sounds too tiring.

Get yourself fit, eat healthy, and get ready. After, get out of the chair, even while you have the catheter in, and walk around the house at least every hour or two. It's OK to sleep in the chair--it might be more comfortable than a bed. Walk, walk, walk some more. But, don't be surprised if a few laps around the house lead to a nap.

You've made your decision, now get ready, and then get past it.