Second opinion shows perineural invasion

I added this info to my last thread—sorry for being redundant. Just hoping to hear from people about PNI and Gleason 3+4. We are apparently leaving behind our hopes for active surveillance.

4 cores now show 3+4=7 with PNI in 2 of then. Gleason 4 accounted for 5% and 10%. Of those cores, but cores showed 60-90% G3+3=6.

So now we are looking at brachytherapy, but still have to meet with the oncologist after the MRI (which could show extension, right?).

Any thoughts on PNI and brachytherapy would be appreciated. Thank you!

Epstein advocates a system that puts the biopsy scores in five risk categories. Based on what your diagnosis, you should be a 2. His thinking (I believe) was that Gleason 6 sounds more dangerous than it is and that a "1" is more indicative of its actual risk.

Here's some info on it: http://pathology.jhu.edu/ProstateCancer/NewGradingSystem.cfm

Allen—we decided to consult with medical oncologist at the urging of PC survivors and due to what we read online. My understanding is that they can provide an unbiased opinion about treatment options and active surveillance. Before meeting with him, we were told by a urologist that immediate removal of the prostate was the only option he could recommend (when we were still 3+3=6). My husband was also lured in by proton people and laser people, both of whom said their way was good fit.

It’s hard to know who it’s safe to listen to.

It was also the oncologist that recommended Epstein second opinion and 3T MRI, plus Oncotype testing, to help narrow down treatment options. If we had listened to the other doctors, they would have sold us treatment without any further testing. The oncologist also right away gave us two names of radiation doctors that he said would both do an excellent job with brachytherapy. Those referrals are worth a lot to us, in a marketplace where you feel like you can’t trust anybody.

Our oncologist invited us to a conference happening right after the diagnosis, and we learned a lot about imaging, treatment options and advanced PC. Plus, we met a number of nice people affected by prostate cancer and we felt a lot less scared afterwards.

So now I’m confused even more by your statement about medical oncologists. You are obviously very knowledgeable and invested in helping people, so now I’m second guessing. We are trying to do everything we can to make the most informed decisions.

We have Kaiser, so everything we are doing is out of pocket. Because we didn’t book a prostatectomy yet. But we weren’t at all comfortable with their urologists or their limited treatment options. Their refusal to let us know about all the available options and diagnostic follow up seems like negligence to me.

Our medical oncologist felt like our only hope for good care. Why is it bad idea? I value your opinion.

StrayI understand where TA is coming from...I think...his advice on the different medicos is very clear...and actually not a stretch to say it is protocol advice...basically..it's uros are sufficient for biopsy advice and performing such...once done ...and you know what you are dealing with...see RO for information on radiation treatmen...A surgeon for surgical removal and a mo for advanced mettastic disease...you could combine RO and Mo in this case...If there is no sign of advanced cancer... talk to RO and/or surgeon and then decide...what you want to do...in any case never talk to surgeon about radiation...or vice a versa...obviously there are exception to this protocol...having said this...you raise an interesting point....that... is what if a have a MO who you trust has no skin in the game...and will make an unbiased recommendation...Actually if you were really lucky you could find a uro who could do that...a ro who could do that and a surgeon who could do that...this is where protocol comes in...it is easier to use protocol for medico...internet...advisors { what ever the expertise ...real or imagined }... or what ever than dealing with each on an individual...this is not unreasonable... it would be unreasonable...to think they could...I only use TA as an example based on your mentioning of how his expertise...is giving you second thoughts to your approach...We are all human and do what we can to help each other...but when one person is singled out as the "ONE" it is not healthy for anyone....It is not TA's fault that he has been chosen...it is "natural" but not healthfor individuals to use any individual as the answer to all their prayers...I say this with respect to TA's knowledge...dedication...and reputation...he is a godsend to folks who don't know...but it ends there...you have found an MO...who like many MO's...and uro's Ro's and surgeons...will give you unbiased advice on who to see...but it stops there...I agree with TA the experts in their field have no business giving advice to on the the others experts "kuleana" hawaian for responsibility.. I trust TA will g treat this analysis in the spirit in which it is given...I think there is real merit in my words...and hope any blow back is minimal...in laymans language what I'm saying...is see thru pride stings and hurt and don't pick the pepper out of the fly poop... Answer this honestly...if TA had not said it the way he did...would you be wondering whether you made a mistake using an MO and who you trusted to in truth give you an in biased opinion...not on your treatment but on the medicos who do treat......Remember loyalty to your sense of truth trumps any loyalty to any individual...no matter the relationship...tribal loyalty has no place in medical decision/s I use the term tribal in a colloquial manner...not down and dirty...good luck logo

Ok, totally different viewpoint. I get it. I hear what you’re saying.

We came away from our first appointment with the urologist scared to death. You should have heard what he had to say about how bad my husband’s case was. But biopsy only showed Gleason 6. PSA was slightly over 5. No positive DRE. So once we did our research, we were like what the heck!! We were so angry that active surveillance wasn’t at least mentioned, given the lab info they had.

So the medical oncologist was great because he was open to AS. That’s the whole reason he asked us to get testing, so that we could all decide with that info if we felt comfortable not treating—and only if they didn’t upgrade his Dx.

Now that we know more, maybe your advice to not get the other testing is a good idea (though brachytherapy doctor told us today that he’d use the MRI himself for treatment). We’ll have to keep checking everything out. I value all the opinions here and am appreciative of the time it takes to respond to people who need help. I’ve learned so much already.

Logoslidat thank you. Hope I didn’t offend anyone. I really do take in everyone’s experiences as I read them and respect everyone for having their opinions. Tall Allen is one crazy smart guy from the looks of his research and depth of knowledge. So I’m listening.

I could be wrong, but I’m pretty sure AS goes out the window, now that there’s perineural invasion. ?? We talk to our doctor next week. Looking forward to his opinion too.

Take care!

PNI is diagnostic on biopsy in that it could...not that it will create a positive margin...since it is only surgery where you get a full look and pathology on the prostate gland...I had containment with in the prostate complete... it was nowhere even near the protective capsule...Oh and I had EXTENSIVE PNI... Yes TA is gift to the forum much more knowledgable than I especially when you get to advance casncer...I know I thing or 2 about Pca and can do give advice where I am comforterable...I know my strengths and I know my weakness...I also have a knack for reading and parsing words where...if not parsed can alter communication of what is trying to be communicated...I like to thing I can give hope to every persone with this disease...be cause it is there...even when some may not think so...I may be the one who should fear I may have offended TA...with even a hint of possible dis against dat...but so it goes...We are all adults here helping folks with a common disease regards

stray I would not be concerned with PNI...it is very low on the worry meter

Stray...Possibly one of the hardest decisions with this disease is selecting among all the different treatment options. I'm certainly not an expert and I don't believe the experts can tell you what the best option is for your situation. That is your call. For certain I'm glad I found this forum and the information that led us to our (wife included) decision. Even with the small amount of PCA I had my Urologist was ready to set up open RP on the same day he reviewed my biopsy results. He's an expert and yet that would have been one of the worst choices I could have made. Each treatment option has advantages and disadvantages and there is no clear cut choice for everyone. For me it came down to AI with annual biopsies verses one of the radiation options. The risk of repeated biopsies for me was significant since I've had three total joint replacements and a blood infection would be far worse than PCA. I elected SBRT even though I had to go out of network. In the end I saved my Insurance more than 10 grand since 5 SBRT treatments was significantly cheaper than 42 IGRT treatments. If you have concerns about PNI the more sophisticated radiation options can treat the margins around the prostate. If your PCA has already moved out of the Prostate surgery is unlikely to cure it. Since I had no urinary issues prior to treatment the only advantage I saw for surgery was having an actual pathology. The incontinence and ED risk associated with surgery made my decision easy. Good luck and keep us posted.

I wanted to address why an MRI is not in your best interest at this time. Every doctor will have his own imaging requirements. For any kind of external beam therapy, fiducials are necessary, and the plan imaging should be done with the fiducials in place. Some surgeons like imaging to help them understand individual anatomy (only a conventional MRI or CT would be necessary for this) to help plan their attack, others find it unnecessary. LDR brachytherapists don't implant fiducials, so any recent MRI will do. You are always better off letting the treating doctor dictate what further diagnostics/imaging he needs.

I'll ignore the comments referencing logo - since I have him on ignore, I have no idea what he said and don't care to know. I don't speak Gibberish, only English.

I want you to understand that my opinion about too many cooks spoiling the soup is based on actual real world experience from men in my PC support groups and visits to doctors. I'll illustrate with a few cases:

1. Patient with intermediate risk PC sent to a brachytherapist only by his MO. No discussion of surgery, SBRT, HDR-BT. The same MO never refers men to SBRT, but only to the more expensive IMRT. When that IMRT RO of his retired and turned the practice over to the brachytherapist, the MO stopped referring for any external beam at all.

2. Patient with low risk PC sent for a bone scan by his MO. Bone scan revealed many spots. Patient took tranquilizers and couldn't sleep while all were investigated. None were due to cancer, of course.

3. Patient with a single 6-core biopsy, 3 positive cores, 2 of the 3 were GS 3+4. Patient was told by his MO that AS would be safe with only mpMRI and CDUS. Two years later, he still has not had a confirmatory biopsy. (this is very risky, imho).

4. Patient with high-risk PC (one core w/ GS9) was told by his MO not to participate in the high-risk trial of SBRT. Patient ignored that advice, luckily, had no side effects of treatment and his PSA is undetectable 2 years later.

5. Patient with recurrent PC after prostatectomy was referred to a brachytherapy RO by the MO who always refers to him. The RO told him his slowly rising PSA (now over 0.3) did not need treatment, and to come back after his PSADT accelerates.

6. One patient was told to wait until his post-RP PSA rose over 2.0 and then go for a C-11 Choline PET scan in Arizona. And this was recently, after Axumin became widely available in this area, and PSMA-based PET scan became available experimentally.

7.One patient, who failed salvage radiation, was sent to Arizona for that PET scan. It showed multiple mets to the abdomen and ribs. When an SBRT RO told the patient that radiation was not only futile but could be dangerous, the MO found an RO willing to do it anyway. The patient had new mets appear almost immediately afterwards.

8. One MO actually wrote a book about how surgery should not be used for localized PC - talk about biases!

I won't say who the MO is, but I suggest caution in using a doctor who is not qualified to make treatment calls.

You can't reliably get that info from an MRI. That's what it means when I wrote that MRis are unreliable for staging. Staging means where the cancer is located - T2 (within the prostate), T3 (growing out of the prostate), etc. MRI is able to detect extraprostatic extension in only about 50-60% of patients who have it. It is not much better than a coin toss for that purpose. I understand you are paying out of pocket for it, and it's expensive.

(What mpMRIs are very good for is finding where to biopsy for relatively large bits of high grade cancer, rather than staging.)

As for SBRT vs HDR-BT... I spent a lot of time trying to decide between them. Living in LA made the choice harder because I could get HDR-BT monotherapy from one of the ROs who first used it back in 1996 (Jeff Demanes), and I could get SBRT from the original pioneer of it for prostate cancer back in 2003. Both are the top practitioners in their specialty. SBRT was radiobiologically modeled on HDR-BT, so the plans, the effectiveness, and the side effect profiles are nearly the same. I was especially drawn to them because potency preservation is so good with both. I could have tossed a coin and been happy either way. I finally decided for SBRT on cost and convenience - about a third of he cost, and laying on a bench 5 times for 5-10 minutes just seemed easier than 2 overnight hospital stays with anesthesia.

Ok great—thank you! Will discuss all of this with my husband. Grateful for the input.