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Devastated by support group meeting: I'm doing everything wrong
Just absolutely devastated last night during a PC support group meeting. I thought I'd share with the support group (via zoom) that my RP surgery is in four days and was hoping I might get a few words of encouragement before the big day. Instead, this support group session was an informational meeting on Focal Therapy from an expert.
To me, what followed was 90 minutes of medical information with the slant that RP surgery is absolutely a terrible thing to do as first treatment if you can do Focal and that people should start with Focal therapy and not suffer the barbaric side effects of surgery (I'm informed, I know what they are).
I was a zoom participant and my audio was turned off and I never had the chance to say, "Hey guys, I'm doing surgery in few days and now you've got me convinced that everything I'm doing is wrong." I was despondent because I thought I had my mind made up and now experts were saying that was not the right thing to do.
It was a rough night.
Let me explain: This meeting turned out to be entirely a presentation by a director of a Focal Therapy program where they offer five different focal therapies. His program was loaded with fantastic information.
But, one of his key messages that I was taking away is that Focal Therapy for those that qualify is that you don't have to unnecessarily suffer the indignities of impotence and incontinence if you choose focal therapies...or at least much less risk. They assess your case and then pick the most appropriate focal therapy. Later, down the road, if your PSA starts going up, you still have the full option of RP. But, another key theme is that you really want to avoid RP because of the horrific side effects. So, explore this new, modern approach that is the forefront of treatment that is Focal Therapy.
At the end of the session, the moderator saw I was waving my arms (my audio was muted from the feed during the entire session) and leaned in to see that I wasn't waving goodbye...I was upset. He could kind of hear me. At first, the discussion was like if you're not 100 percent confident with your decision, then contact your doctor and get more info and if not confident, cancel the surgery....even it it's as late as rolling in the operating room.
However, he very graciously got my phone number and called me directly, which I'm super appreciative. We were able to talk more. At first, it was an assessment of whether I would be a candidate for Focal Therapy (contained to one lobe of the Prostate, no spread). So, yeah, I probably could be a candidate. But, then I think he realized that an entire session on Focal and how glorious it is with no opportunity for "support" from the group for those at a surgery turning point could have left me "conflicted' just days before my surgery.
I reached out to a PC buddy who was really helpful. He shared his journey and some of his thought. The turned out to be a real lifeline.
I'm still conflicted, but thinking I'm going forward with my surgery. Holy smokes, that was not what I needed from a "support" group days before surgery to be convinced that I'm doing the absolutely wrong thing.
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@fritzo Yeah man, that must have really knocked you for a loop…like being wheeled into the OR and seeing that your surgeon has been replaced by a guy wearing a Smithfield Ham apron…😳
Look, Focal can be good, but is it good for you? There are so many variables that can take you out of that sweet spot where it will be totally successful - as if any treatment can do that.
I would go over all your pre-op testing, biopsy, Decipher score, etc. to see if Focal might even be viable for you.
No amount of cheerleading from anyone - including us - is going to erase all doubt in your mind.
I have always said that the most important thing is to be totally on board with your choice of treatment because regret cuts deeper than any scalpel.
Phil
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8 Reactions@fritzo
“When to start pelvic work post surgery-good to know you started two months later. Wonder if it's ok to start sooner. Adding that to my questions for the doctor. ”
What my care team told me the day I had my catheter removed was, “We’ll see how it goes for the next 6-8 weeks, and if you haven’t seen any improvement by then, we’ll get you set up with a pelvic floor physical therapist.”
However, when I went back for my pathology review and surgery follow-up just three weeks after my surgery, they asked about my peeing situation, I told them, and both my doctor and the nurse said, “That’s no good, you should be seeing some kind of improvement by now,” so the nurse toddled off for about 20 minutes, then came back and said he’d found me a therapist about 35 minutes from my house, and sent in the referral for me.
I called the facility a few days later because I hadn’t heard from them, and I’m glad I did, because they were scheduling so far out, the soonest they could see me was…8 weeks after my catheter removal, but then there was a cancellation, so they got me started at 7 weeks.
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1 ReactionI chose Tulsa Pro for my 4+3 after doing a lot of research and soul searching. I ended up in the clinical study at Mayo Rochester. I liked the technology, but I also wanted the chance to potentially give back by giving guys other choices going forward. I know all the potential risks (just like all treatments have), but I was ok with that. I am 2 years in and no sign of cancer. No choice is easy and my advice to all guys is do the research, make the choice that is right for you, and never 2nd guess that choice! Easier said than done though!
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5 Reactionshttps://connect.mayoclinic.org/discussion/newer-surgery-technique/
...read this too
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1 Reaction@fritzo ,
sorry to hear about your experience. Regarding support groups I suggest you look at the AnCan.org. They have weekly meetings based on risk factors and they always give priority to new guys.
Best of luck with your treatment!
Stay strong and be positive!
Dinu
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3 ReactionsGosh that 'support group' session muddied the waters for you . Sorry to hear of that! You likely did a ton of research and we're very confident with your given situation the operation fit rather well. From my research, depending on your particular situation, no one modality is by far better than another modality. I had the operation and I don't think I would change anything about that. I was 57 so I recovered rather quickly. However, the recovery takes a month or two. May I make a suggestion? There is a group called the reluctant brotherhood. They have meetings based on your Prostate situation. They are also starting a YouTube channel and a Spotify podcast. They have people from all over the United States and Canada and sometimes even Europeans drop in. You get a full menu of speakers and different attitudes on procedures, etc. Here is their web page https://thereluctantbrotherhood.org . I am more than sure you are on the right track , for yourself . We are here to support you ! Let us know how things workout Sir !
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4 Reactions@jcf58
23 years ago I entered a clinical trial at UCLA on a personalized vaccine developed for my cancer, non-hodgkins lymphoma. It was randomized which gave me concern, and you have to go through all the tests like having surgery to pull a lymph node out for the possibility of the vaccine, giving yourself self 3 daily injections for six months after your possible vaccine shot by the doctor each month. Extra bone marrow biopsies during treatment, still getting the standard of care of 6 months of chemo before the trial. Two years I relapsed, was unblinded and found out I did get the personalized vaccine. I was back to just a standard of care monoclonal antibody infusion this time for treatment. Several more years passed and ultimately the clinical trial was determined a failure as most are, but my oncologist was and still is that I have now had a miraculous 18 year remission. He said their is no way to ever know now, but subsequently the vaccine might have had some synergy with the later monoclonal antibody. He was intrigued. Then three years the prostate got me, and I also looked again into clinical trials.
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4 Reactions@turtbean That's really fortunate they got you, but it's too bad it took so long. Glad you're doing better now. Recovery is not for whimps!
@jcf58 I think you represent what the hope is for these new treatments. So happy it's worked out. I've now learned that I am most likely not a candidate due to my tumor location. But, I'm hopeful they keep developing these treatments.
Yeah, second guessing is brutal.
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1 Reaction@thmssllvn Yeah, that looks super promising. I am going to a major center and my surgeon does an anterior fascia sparing, Fascial-preserving approach. It's multi-port, so sadly, won't have the same day escape...but it's supposed to really help with continence issues.