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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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@turtbean Good luck and either way, they are going to make you feel better. Hang in there!
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1 ReactionWhen my urologist explained the post procedural external drains, extended foley catheter and fairly high incidence of impotence and incontinence...I opted for IMRT, HDR and six months of ADT.
My research suggests surgery and radiation treatment regimens have very similar outcomes. I think Dr Scholz feels that few of us should opt for surgery as radiation has gotten so much better over time.
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2 Reactions@fritzo I had my Radical in 1989. I am still alive 35 years later. I have a penal implant and no incontinence. 3 of my friends chose the radiation and they are dead. 10 others chose radical and are doing fine. get all the rehab therapy and Live! You will always get all the negative stuff.
Good Luck.
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6 Reactions@rpogatchnik1590 Wow, you are my hero. So sorry for the loss of those three friends. It just tells you choices are tough. Rehab therapy-ok, totally signing up. Thank you!!
@capatov Radiation has dramatically changed over the years. My daughter is a family practice doctor and she sees lots of people that had radiation a long time ago and the side effects from the less targeted approaches. The new approaches are so much better.
@fritzo I have a friend that received radiation therapy about 25 years ago for rectal cancer. While she is alive and fairly well, she does have recurrent stomach and intestinal issues from certain foods. These bouts often lay her up in bed for over a day at a time.
Today, men with PC can get a pre-treatment implantable gel that provides space between the prostate and vital bowel and bladder organs. I believe the leading gels are BariGel and SpaceOAR
I got SpaceOAR before my radiation treatments began and have not had any side effects to date
@capatov "the post procedural external drains, extended foley catheter and fairly high incidence of impotence and incontinence"
In my opinion, the first two are the same for everyone with a competent surgeon. In my case, they were a minor annoyance that did not interfere with my daily activities during the brief period I wore them. I don't understand the aversion.
In my opinion, the last two are highly variable for each person. In my case, I elected impotence (nerve-sparing) surgery beforehand, & was not incontinent afterwards. But as I said, this part varies between persons, & I highly understand the aversion.
@fritzo I messaged you the link.
@jeffmarc I do drop in on AnCan meetings once in a while - usually it’s the veterans meeting or the one for recurrent (or advanced) prostate cancer.
Since I currently have no evidence of disease, I only hang around long enough to hear about modern treatments. Once the discussions get too lengthy, I drop off.
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