New Member Looking for Advice

Tod, welcome. I was a Gleason 7 (4+3) and gathered up the same information as you regarding my options. As others will tell you. it really comes down to what YOU are more comfortable doing. The one thing I would advise it that once you make your decision don't look back. No buyer's remorse. No second guessing and playing the what if game.

For me, the prospect of side effects played very little into my decision to go with surgery because they are so individualized. Two of my distance running friends, both doctors, went through this and both told me something like "It's cancer, I want it out of there." That played into my decision.

In the end, I was downgraded to a 3+4 and got to experience the side effects. For the incontinence I had an artificial urinary sphincter installed and couldn't be happier with that. As for the ED, it was an issue before the surgery and the procedure certainly didn't improve it. A small dose of sildenafil takes care of that. I'm 3-years out and have an undetectable PSA.

YMMV.

Hi Todd,

I was 3+4, psa 6 and a significantly enlarged prostate. I visited many Doctors, joined support groups, read books, etc. I was convinced that radiation would make my existing urinary symptoms worse and chose RP with a highly experienced surgeon just over two years ago. It's worked out well; undetectible PSA's, completely dry at 2.5 months, pretty good erections with sildenafil. But, if you have a normal size prostate, I think you should strongly consider radiation with your 4+4. Radiation has improved greatly with the imaging, precision, etc. Please visit the very best Doctors you can find, even if you have to travel. You only have one chance with your initial treatment. I know, it's a balancing act; take the time to make your best decision but don't give the PCa a lot of time to possibly spread. Whatever treatment you choose, try to use the very best practitioner you can find. All the best to you.

To answer your specific questions

1) Adt side effects can be reduced with daily exercise.

2) If you are fit, and the surgeon experienced, long term incontinence is less likely. Most guys are dry within a year. Some almost immediately. The incontinence products are not horrible. I am two years out and wear a a pad a day for sneezes etc…(stress incontinence).

In any case, whether its pads or adt side effects, you have a chance to wipe it out. Its amazing what you can live with

Good luck.

Todd, welcome, sorry for your diagnosis, but its all treatable.
First to your assumptions...

Yes, surgery will tell you about margins. With radiation though, there are no margins to consider, so its a moot point. However, what you left out, is that surgery will tell you your true gleason score. about 30% of surgical pathologies show an upgrade or downgrade from the biopsy, because they look at a larger piece of the prostate.
With Surgery, its not a forgone conclusion that you would need Salvage Radiation + ADT. If you have no adverse findings on pathology, and the tumor is confined to the prostate, you could just keep an eye on PSA and if it remains undetectable, you are home free. And yes, it could be one and done, or as you say, a cure in a day. With that said, thats not always they case many guys (myself included, with favorable pathology and a g7(3+4)0 recur. With a G8 and a fair amount of cancer based on the 8 of 12 cores positive, theres a decent chance that you would need SRT+AD
As far as side effects, - short term, yes, the catheter - but i would say thats nothing more than an annoyance and shouldn't enter in your decision IMo. More important are the longer term side effects. With a good , very experienced, surgeon, continence will likely not be an issue longer term. But it does happen. Erectile Dysfunction doesn't happen to everyone, but the chance of it being an issue is higher than the incontinence issue. So ya gotta be lucky.

Re Radiation, you may have some short term side effects, but with todays technology at a center of excellence with the latest machines and software, good technicians, if you do have side effects, they may well be transitory. I am two years past salvage radiation no issues. But everyone is different.

I think the idea of EBRT+ADT+HDR , also known as Triple Play, is a good one. Our member JNF will certainly chime in on that one, as he had that treatment, with a tough case, and knock wood, it all turned out well for him. In fact he is from Georgia, so he can comment on practitioners in your state.

ADT is different for everyone, there is one member here, dont recall who, that has posted more than once that he had no material side effects, although that is unusual. Some guys have a tough time. For me, i was only on it for 6 months, it wasnt fun, but it was manageable. There is a new form of ADT, Relogolix, a daily pill which is easier than injections. And is thought to have less side effects as far as Cardiac issues go.

I think that addresses all of your specific questions. The only thing i would add, is that i agree with Djin above, it would not hurt to have a second opinion on the biopsy slides from Dr Epstein at Johns Hopkins.

Good luck, seems like you are doing a great job exploring all your options, so you will surely make the right decision for yourself.
Keep us posted

Hi @Tood n GA and welcome. You've left us guessing at some key data, so filling in some blanks the guys mention would be good. PSA, to begin. Did you have an MRI before biopsy? If it randomly hit that much cancer there might be more, sorry.

If you did have an MRI, find out if your free urethral length is above or below 10mm (3/8"): that is a cutoff for degree of continence difficulty. Average is 14mm (1/2"). Where guys get into trouble is when some gung-ho surgeon goes in without looking ahead and finds 1/4" or less. I was a long but not freaky 3/4" (19mm) and was immediately and basically completely continent. Imaging is the modern miracle. But for me the biggest driver and this cannot be bolded bold enough You Need a High-Volume Surgeon if you go that route. He or she will help ED if the nerves can be spared. Again, before choosing surgery you need an MRI to set some sort of expectation in that regard. Nerves help continence as well.

Ignore the catheter: it's really not an issue and if you do have LUTS you could kind of get used to not having them for a while!

Then: how big is your prostate? Do you have BPH? Urinary symptoms? That (and MRI evidence) is why I chose surgery.

Based on what we have, I would personally probably look long and hard at the radiation triple-play before surgery because you would have a big chance of BCR and who knows about nerves etc. But I (and perhaps you) need more info to make a true choice. Good luck.

Find yourself a Urologic Oncologist. As a G8, you need an oncologists opinion, specifically a Urologic oncologist.

From my observations on this since being diagnosed in 2012, a radiation type treatment has a higher success rate for higher risk PC, with less side effects than surgery.
The members on this site who have experienced a recurrence all seem to be the surgery guys. Radiation covering a wider area may have something to do with that. If radiation fails it’s most likely the cancer had already spread outside the prostate. Or the RO was incompetent. There is also a certain amount of luck involved.
I had several consults and the uro’s, including an oncology, uro advised me to have surgery followed by radiation. No thank you I said.
Whatever you decide, the Key is to find one who specializes in prostate cancer.

BTW, one response to your comment about ADT and ED, as I've heard a lot of guys voice this. ADT leads to a complete lack of libido, but it doesn't directly give you ED. (At least it didn't with me and I don't see why it would with others.) I could still perform, I just didn't have any desire to do so. I suppose you could say that there's no difference between those conditions on a practical level, but at least in my case I made sure that I was keeping all the equipment in good working order for when I wanted to use it in the future.

Hi Todd, I am another Todd but on the west coast. I never had an option. I wish I did. I have no experience with radiation or surgery. Gleason 8 puts you in high risk. I have been playing this game for over 15 years. All but 2 years have been on ADT. God knows how much I wish I could have been one of the cured guys. I have known many men who have surgery, recover, and never have to look back. I want to be one of those guys so dang bad but instead I get to do PSA checks, scans, and other blood work to be certain the medication is not killing my liver and kidneys. I am not complaining. My life is amazing and I am so grateful to still be here after so many years. Still, if I had a crap at being cured I would go for it. Just my 2 cents for what it is worth.

That's really, really, helpful Todd. That's a big bad mother of a prostate: you are on pretty well exactly the trajectory I was on size wise. You hear of 200-grammers but who cares: we're big enough. It also suggests you're in good hands but check the surgeon's volume (you want multiple RPs a week if you go that route).

You have a tough decision, above my pay grade given your G8, so weight this accordingly but my 2¢ would be as follows.

We both have BIG prostates. You have my exact LUTS pre-surgery: my worry was that they were unlikely to get better with radiation. And man, post-surgery, the peeing is awesome. I realise it hurt before. I asked on here about the LT prognosis of BPH post radiation and basically there is not a lot of information. You do NOT want obstructive symptoms after radiation.

I had my 19mm: big driver to surgery given the above. Make them tell you yours. On MRI I had one nerve at risk, one safe. One is enough, although not ideal. Same as you but without pre-op ED (you probably need to understand what's driving that whatever treatment you take). I rolled the dice and got 1.9.

The big difference is the G8. I reckon I am 50:50 for post-op radiation, but not too worried. MSK looks to put you higher. i.e., radiation is probably more likely to cure you ADD than surgery /ADD.

But "cure" is a dirty word on here: it's not really the aim. Really we are managing. You are managing the cancer (play with the MSK post-treatment nomograms: I have like 1% 10y PCSM) and - key point - managing LUTS.

I'll leave it there. I hope that helps but as someone says above, you need an unbiased onc to help. Keep the thread running and good luck.

Todd n GA said...
CT Abdomen scans and NM Bone Scans showed no evidence of cancer outside, but could not talk urologist into PET Scan (will try again)

When discussing make sure you specify PSMA PET.

Todd n GA said...
I have been informed that I need to begin treatment this calendar year

I agree with your docs. Clearly you have spent months gathering a ton of information but now its time to pull the trigger. Beyond a quick look at the slides, I'm not sure what JH will tell you that you already do not know. Even JH looking at the slides...it either gets a little worse (Gleason 9) or better (Gleason 7).. Even if they say 7, there was another pathologist who saw an 8, and they only sample a tiny fraction of your prostate...and with a 7, there is a 4 lurking in there. So really, what does it buy you?

Just to be clear, and not sugarcoating anything, you have a literal killer lurking inside of you, but are in a position to beat it to the draw and wipe it out.

I certainly would not wait until March 2022 to talk to one extra doctor. Start down a path, get things scheduled, and simultaneously try and get the PSMA Pet. If it does or does not alter things, you have not lost any time.

Good luck eliminating the critters.

“prominent median node that is near the bladder”
Not sure what that means but I had a weak stream, enlarged prostate, 63 grams I believe and a node or nub partially blocking the urethra and I was still a candidate for radiation.
Shrunk prostate from adt external beam then green light laser “trim “ to reduce nub prior to brachytherapy. Never thought it would be an option. Dattoli out of Sarasota. But 8 years ago so I am behind the tree as to what is available now. My older brother had 5 sessions of radiation only, I think from Zelefsky in NY.
Get the docs who specialize in Prostate cancer. It can make all the difference in the outcome
Good luck to you