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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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Unethical, most likely. Upsetting, definitely. Quick recap and closer.
Just so that I can put a close to this stupid and painful chapter from my very intense crisis of confidence in choosing surgery. This crisis in confidence was induced by a support group moderator and presentation that instead of being a 50/50 split on information and support, this one was 90 minutes of presentation on why Focal therapy is so exciting and so much better than surgery because it offers equal success.
That was followed with a direct conversation at the tail end as they closed the meeting as I desperately told them that I was now very conflicted. The support group nurse moderator advised I need to reconsider my surgery decision because of my new doubts induced by the support group presentation and the fact that Focal therapy is so much better (less side effects and actually presented as being equally as effective as surgery). I do admit, I was conflicted in a big way after the session.
The nurse moderator said that if I wasn’t 100 percent confident about surgery than I needed to cancel surgery, even up to the point I was rolling into the operating room. I get that. You need to be confident in your choice.
After discussing the incident with my son, who is a doctor who treats medically complex patients at one of the finest rehab hospitals in the world, he said he felt the behavior of the support group nurse moderator was incredibly unethical. To advocate for one treatment over another without having my pathology wasn’t good, let alone the fact that it wasn’t presented in an appropriate medical setting…there was more.
I seemed like the standard decision approach is to present treatment options and let the patient decide. It’s the patient’s decision. Yes, doctors should advise on what they think your various treatment options are best options for your pathology. But, I’m not sure support group moderators should assume that role.
Mind you, I had attended one other session with this group. I liked all the fellows in the group. I could see good things happen. After I introduced myself, the nurse moderator on learning that I was 3+4 instantly said I should consider active surveillance. I was a bit taken back because I had already been told by two surgeons and a radiation oncologist that I was not a candidate for AS based on my pathology. Several support group members jumped in later to say that, no, I was making the right decision. It seemed like they were saying, don’t listen to the moderator.
The second meeting four days before surgery, I just hoped to get a little pick-me-up from the members, “Hey, you got this. You’ll do great.” That didn’t happen at all.
After the meeting, I reached out to all of you and some PC buddies. That was incredibly helpful in ways that I can’t even begin to put into words.
As it turns out, my doctors advised against Focal treatment. But, I’m hopeful that Focal treatment continue to be developed and a strong option. To me, it looked like most Focal therapies have way too high a recurrence rate and many are not covered by insurance because they are considered experimental. But, I hope work continues and it becomes a really strong option for lots of patients.
Spoiler alert: I got the surgery. I’m 100 percent convinced it was the right choice for me. But, dang, I could have done without putting through an additional wringer during this time of turmoil. Yowza.
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6 ReactionsUmmm...does the scrotum swell up right away or later? It's not super huge right now, which I was happy about, but maybe that's to come.
Yeah, the belly pain was intense for me. As the gas boating pain area started to go get less, the abdomen pain jsut felt that much worse which was really intense yesterday. Then, the rolling bladder spasms were coming hard and fast. I could barely stand up straight when I tried walking because of that pain.
The good news is that it is getting better today and the spasms seem to be subsiding. Thankful for that for sure.
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2 Reactions@wheel1 Home now after an incredible bumpy car ride home. I felt every bump with jolts of pain. But, feeling better now.
Yesterday, the only way I could get out of my recliner was to slide off on to the floor and then work my up from my knees. Today, I succesfully was able to stand up out or the recliner, but it did stress the abdomen, so I may just keep to the slide to the floor routine.
Working on doing more walking and drinking-getting there.
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2 Reactions@heavyphil Didn't do great walking yesterday-but better today. I actually did pretty good walking the night of surgery, but I think as they weaned me off the oxy, the pain showed up in full force. Just took one tylenol this morning so far, so that is progress too.
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1 Reaction@fritzo
What I don't understand, is why I had none of these issues (at age 76). I don't doubt your report at all. I literally had no discomfort, let alone any pain for my robot-assisted laparoscopic radical prostatectomy. I was told that my abdomen was inflated to create working room, & that I should expect it to go down in a couple days, which it did, but there was no discomfort. There was no pain or discomfort when removing my abdominal tube or urine catheter a week later.
Similarly, 20 months later I had a hernia repair done robotically (different doctor, different medical facility) in a same-day operation & release, & the doctor gave me a prescription for oxycodone. I declined it, but he insisted, as he didn't want me to get home & then need it, so I filled the prescription. Never needed it. No pain, no discomfort.
It's not like I'm some superman invulnerable to pain. Nor am I some athlete; I'm quite sedentary. I find routine dental cleaning visits painful. I take aspirin if I have a headache (about once every 3 months), or a Tylenol for a muscle ache (about every 3 months).
My prostatectomy surgeon was doing about 115 operations a year); I don't know about my hernia surgeon. In the latter operation, the surgeon in his notes described the procedure as difficult due to the preceding prostatectomy.
???
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1 ReactionSwollen scrotum - I had to actually go back and check where I’d posted about it on another (non-Pca) forum, and I had my surgery on the 7th, and they really swelled up around the 10th, reaching peak inflation on the 11th or 12th, before getting back to the expected size (but with more dangling) a few days later.
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1 Reaction@surftohealth88 Woot! I know I'm incredibly lucky to have it discovered relatively early.
Walking the loop in my house and filling up the leg beg-my mission for the next good while.
Not easier, but it's getting easier (especially compared to yesterday-that was rough)
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2 Reactions@northoftheborder What a roller coaster ride...you definitely are a warrior. Thank goodness that ambulance took you where it did. Looks like it was meant to be.
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2 Reactions@klein505 Yes and yes! So many emotions going on right now-but I so appreciate you all. Thanks so much Mrs K!
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1 Reaction@fritzo Slow and steady, Fritzo, you just had major surgery…don’t try to rush the process - just help it along with normal daily activity and if you just wanna lie down that’s OK too.
Phil
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4 Reactions