Devastated by support group meeting: I'm doing everything wrong

@fritzo ,

also after the surgery those groups are very helpful. Just cause you had surgery does not mean that the problem is gone. Depending on your surgery outcome you may end up with additional radiation or ADT treatment.
Just like me. I am waiting for the official pathology results from the surgery, hopefully this week I will get the results and then the plan moving forward can be defined. I am still continuing my ADT which i started before the surgery, but it will most likely be augmented with RT.

Looking forward to hear back from you once you get back from surgery.

Stay strong and be positive!
Dinu

If you are a young man and still have need of a hard on, then you should consider Focal. About 1/2 of all RALP men end up with a limp dick. It is sad to see their posts as they talk about pumps and such. But Focal is not perfect and the PCa will probably return. But if you buy 5 years, it may be worthwhile.

@fritzo Glad to hear it! And don’t obsess over the nuts and bolts of # of ports, incisions, etc.
If you picked a really good surgeon, he does what works best for him and gives the results that work best for you.
Remember, you have CANCER. Getting it all out is paramount. I told my surgeon that he should not equivocate between trying to cure me and trying to keep my erections - there was NO contest in my mind.
Others, perhaps, focus on SE’s and they are important too, but don’t lose sight of the forest for the trees -
- when you wake up you want to hear the words “we got it all” and everything else is just gravy.
Phil

@fritzo
Hi, From the information I have read the success rates of both surgery and radiation are about the same. Both are in the mid 90% for localized process cancer. It’s more of a case by case depending on lots of factors. If you have cancer contained in the prostate and you have an experienced surgeon you should be fine. Sad to say there are no guarantees.

My view on this is a bit different.

First (as you have just found out), there are different types of “support” groups out there. Many do offer “encouragement,” and will nod “yes” and agree with everything I say. (I have not found those to be useful.)

Others provide “support” in providing the latest diagnostic and therapeutic information, for me to then digest and consider, and (perhaps) to discuss with my medical team to see if it would improve my treatment outcomes (I have found those to be very useful.)

And finally, other “support” groups have their own agenda, either to promote (or demote) a particular treatment or protocol, or simply to be critical of whatever path others have chosen. (I have not found those to be useful.)

(I regularly attend two in-person support groups, and irregularly attend five virtual suppirt groups.)

That said, if you’re already that close to getting a prostatectomy, there shouldn’t have been anything said at that Zoom meeting that you hadn’t already known about and already considered in making your treatment decision.

> you should already know all the facts about RP.

> you should already know all the facts about focal therapies.

> you should already know all the facts about (external and internal) radiation therapies.

At this point, this close to going under the knife, there should have been nothing that expert could have said that would make you conflicted or despondent because you thought you had your “…mind made up and now experts were saying that was not the right thing to do.” So, regardless of what that Focal Therapy expert said, you should have already looked into that option and known (at least most) of what he was saying.

I would simply ask you to consider whether you’re confident that the treatment choice you’ve made is the right one for you? If the answer is “yes,” then absolutely go for it. If the answer is anything other than “yes,” then you probably need to step back and think this through. (When I decided to have proton beam radiation therapy, I had spent at least a couple of years accumulating information and evaluating treatment options. When I finally made my decision, that was it. As much as anyone can be certain, I was confident that was the right choice for me,)

Even though I didn’t have focal therapy (because of the nature of my disease, I was not a candidate), I do sort of agree with his one point —> If you’re not confident with your decision, then contact your doctor and get more info…..

This is an important decision you’re making; possibly the most important decision you’ll ever make. And, you’ll have to live with this decision for the rest of your life. It’s not possible to be 100% certain, but you should be as certain on this decision as you have ever been on any decision you’ve ever made. Again, if you’re good with it, go for it.

Exactly 5 years ago today (April 19, 2021), I started my 28 sessions of proton beam radiation; I had already had my Eligard injection and the SpaceOAR Vue insertion. I was confident it was the right decision for me then; today (5 years later), I’m still convinced (and relieved?) that everything has gone as well as we had expected and planned.

Good luck as you proceed on your journey.

@ctsenior
The new one incision hole surgery is suppose to dramatically lessen the amount of nerve damage. There are lots of men who have had surgery that have recovered and have a useable member. I would not take the risk on focal therapy because long term data does not support its use. “Need for Retreatment: About 20% of men may require additional treatments (either a repeat focal session or whole-gland treatment) within 5 years. “. (From the Cleveland clinic). Surgery cure is about the 91-95% range. Sad to say there are no guarantees, but more based on a case by case by competent surgeon and oncologists.

@heavyphil Yeah, I think the horse has definitely left the barn for me concerning surgery and who will do it. At this point, I've got to shut out the what-if's and the woulda-couldas because it almost drove me crazy this week.

I still don't appreciate the "support" group session this week that turned into a you must reconsider everything, cancel surgery and see if you can possibly do focal therapy before it's too late, your'e making a mistake you'll regret. I now know the moderator is very much anti-surgery. The group coordinator is definitely anti-surgery because he is still angry about having surgery long ago and the after effects. I know these things because we talked on the phone after the session. The presentation felt very anti-RP surgery. So, a perfect storm at exactly the wrong time for me.

I've now found out that I probably was not going to be a good candidate for Focal treatment, so I can now check that off the list.

Big picture, I actually did switch course pretty dramatically over these past couple of months. At one point, I was going to do IMRT. Since my Decipher score was going to require that I be on ADT for six months, radiation was out in my mind because I want to avoid ADT as long as possible.

Why surgery? It seemed like the initial surgeon and radiation oncologist were all saying the same thing you hear on the internet as far as advice for new patients....choose the treatment where the side effects bother you the least. In that equation, radiation wins. Surgery side effects suck instantly. Radiation side effects suck later, but at least it is delayed.

I decided that is the totally wrong approach. You should choose based on what treatment gives you the best options if there is recurrence. For me, it's recurrence., recurrence, recurrence. I can hope for "cure," but my head doesn't work that way. My head says be prepared for the worst.

The local radiation oncologist recommended I read Dr. Patrick Walsh's book, "Guide to Surviving Prostate Cancer." Not too long after I finished the intro and a couple of chapters, I kept noticing that the various chapter authors were from Northwestern. I stopped and literally asked myself, "Why am I not going to Northwestern??? " which is relatively close to me)

I did lots of homework on surgical procedures and saw that the Northwestern surgeons were experts at some of the latest techniques. I picked the surgeon who probably does the most surgeries there and leads their fellowship program. So, a teaching surgeon has to stay current. I asked him lots of questions about the approach and was satisfied.

Yes, I wish I had more time to wait out the latest greatest. But, I feel like the center at Northwestern is very well regarded. My surgeon is top notch. I definitely know not to put false trust into doctors telling you everything (!), but at some point I have to put myself into their gloved hands (or perhaps just their robotic joystick controller hands).

Many thanks for all your support and great advice!!

@surftohealth88 Good note about "promoting". And even without that crass motive, we can never forget that our doctors are human, subject as professionals to the need to know "facts" and hold onto them, sometimes before they deserve the name or in the face of (at least initial) counter evidence. It's just human, especially among people who are esteemed for a particular body of knowledge. One "tell" that this is happening may be when we observe enthusiasm - an emotion - come into a doctor's recommendation. I appreciate professionals who give me objectivity and leave the emotion to me and my loved ones. We have plenty as it is.

@ctsenior Yeah, from what I hear, it's seems like it's 90 percent of RALP men end up limp. And, yes, I have been a bit obsessed about that. Thanks for the advice...good to have options for sure.

I'm 63, but I think of myself still as young. I know others look at my gray beard and probably think otherwise. I almost think Focal would be great for old men too...because if you want to kick the can down the road a bit and then do the heavy recurrence treatments, you still can.

If you're old, you probably aren't a candidate for surgery, so Focal might be great and then follow with radiation/ADT when it comes back.

Based on the info shared by @jeffmarc (thank you again!) from the UCSF Prostate conference on this Friday; UCSF finds on recurrence with focal was really staggering. "Overall focal therapy is associated with minor side effects, but high rates of recurrence both in- and out-of-field."

This bullet point from the presentation really seemed like a shocker....the UCSF Result for their first 135 HIFU patients was: "• 54% recurrence (41% in-field)."

Recurrence is higher than 50 percent, so that means you will have to follow with surgery/radiation/ADT or whatever choice you have. So, I'm guessing it does buy you time, but perhaps spread becomes worse. I don't know.

I really do appreciate that reality check. Yeah, dick at half or no mast, coming up. Sucks. But as a long-time buddy of mine told me this week who has complete ED but is cancer free after eight years , his decision was to chose life over cancer Hoping to do the same...

@brianjarvis Brian, you are 100 percent right. They should keep your comment as a permanent guide for all patients making a decision. Do all your homework and make a decision and stick with it. Super glad that your choice has gone so well. That is fantastic-congrats!

Here's my short version: I typically retain information really well. About three months ago, both my surgeon and radiation oncologist briefly mentioned that I wouldn't be a good candidate for Focal, but that portion of the conversations three months ago lasted all of 1 minute total in what has been at least four-five hours of treatment discussion sessions with my doctors (four different docs at this point).

During that support group meeting (which is typically patient support and not informational), I got caught up in their hard push on how amazing Focal was and then follow-up discussion with the moderator that I really needed to think about stopping my surgery date and explore focal more and not make a huge mistake.

I'm not normally an idiot, but feel like one this past week.