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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
My husband did not have any swelling anywhere - as all things PC it is very individual.
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3 Reactions@surftohealth88
Yep, that’s been my experience so far (very limited, admittedly).
I’ve been posting on a non-PCa forum about everything I’m going through, because there are several men on it in various stages of BHP & PCa, so there’s a lot of interest.
I gave an accounting of my catheter removal, which was so painless I could have easily fallen asleep…had it lasted more than 30 seconds, and I immediately had several people disagree with me, saying theirs was excruciating.
With the soreness and swelling - I was very sore the first day home (I was in the hospital overnight), but it wasn’t my incisions, it was more of an internal soreness, sort of like I’d gone crazy with a gym workout after being a couch potato my whole life…just a very sore abdomen and just up above my groin.
It subsided pretty quickly, no oxy necessary, but it took a few weeks before my tummy went from swelled and distended to its usual middle-aged slight paunch.
Everyone’s different. I barely felt capable walking at the hospital, and the next day wasn’t much better, but by the second day home, I was slow, but I could manage quite easily. Every day was a little bit better. By the time I went back up for my catheter removal eight days later, I was moving fairly easily, but still had some tenderness, especially in my perineum. I think I sat on a cushion in the car for a solid two months (those VW seats are stiff!).
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6 Reactions@fritzo
I had my surgery 16 years ago, It was robotic, but who knows what’s changed since then?
Had no gas at all after surgery and had no swelling of my testicles. I guess what I’m getting at is it may or may not happen.
I’m wondering if they’re using different Techniques now that cause that gas problem.
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2 Reactions@jeffmarc Funny thing, my son-in-law had robotic laproscopic surgery two months ago for a hiatal hernia. So, I knew exactly what to expect from that type of surgical procedure-lots of gas and other types of pain. They inflate your belly with carbon dioxide gas so they can see what they are doing inside. The good news is that they are not cutting you wide open, which takes longer to revoer from. The bad news is the gas pain, but it supposed to resolve within 3 to 5 days as the gas is absorbed by the body.
I'm doing much better. But initially, my belly was really huge (distended), I was super burpy and I definitely had one of the other side effects of the procedure, where the CO2 gas in your stomach area expresses itself to your nerves as shoulder pain. It was horrible, but I definitely felt it.
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1 Reaction@readandlearn My pain threshold normally is incredibly high. I roll through stuff without letting on much. But from these forums, I know that everyone is incredibly variable with their symptoms post surgery.
I'm super glad to be much better today. I've only taken a few Tylenol/Ibuprophen on a 1/2 dose rotation, mostly at my wife's insistence.
I have heard that guys with six-pack abs suffer a lot more pain. I don't have six pack abs by a long shot, but I do core workout exercises every day....so maybe that was a factor?
Either way, 12 hours after surgery when all the surgery pain meds and a dose of Oxycotin wore off (recommended by the night nurse), I was hurting bad. My son (a rehab doc), recommended that I take a 1/2 dose of oxy for my 3 hour trip home because he could see my pain level.
Luck of the draw I guess.
@turtbean Well, more parting gifts from surgery to come 🙂
Probably more terrifying if you don't know it's coming. Thanks for the heads up!
@heavyphil You are so correct....I was going full steam up to about 2 p.m. today and then completely ran out of gas. Just woke up from a long nap. It was kind of fun during the stretch to see all that I could do today that was impossible yesterday.....but guess I got a ways to go.
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2 Reactions@surftohealth88 Glad for that! Here's hoping
@klein505 Thanks @klein505! You all helped me get to this point!
@fitzhealthacct2025 It definitely is the hardest thing to do. Yeah, no looking back...won't do us any good anyway. Thanks for that!