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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
Think you are with a good team too regarding their approach
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1 Reaction@fritzo
He beat the ball
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1 Reaction@wheel1 YES!! Great point 🙂
@brianjarvis
You should check out ancan.org advanced prostate cancer meetings. First and third Mondays of every month at 5 PM Pacific time second and fourth Tuesdays at 3 PM Pacific time. You can go to the website and watch one of them to see what’s going on. They’re not Affiliated with any medical institution. They’ve been giving advice to people for about 15 years on what to do, how to get treated. They have meetings for low and intermediate as well as Active. surveillance and Many other meetings, including those in the military, who need help getting treatment and they have even started to cover other diseases. They have meetings for though was under 60 with cancer and meetings called speaking freely, where people can talk about everything but treatment, Emotional issues.
When new people come to the meetings? They are helped First. They go over their cases and give advice about treatment. There’s usually at least three doctors in the meetings, when they are giving advice they can call on them for medical recommendations.
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3 Reactions@brianjarvis
This is SO helpful!
On that first one, is that one you can message me? Didn't see the link. I like the idea of speaking more freely.
Pizza and a meeting - love that. Do confess, during my now tragic/not-so-tragic recent meeting, I did noosh on pizza during the zoom. It had been a long work day. My bad.
Yeah, finding forums/groups is super challenging. Seems like you have different needs at different times. My next need will be post surgical recovery and the first year adventure.
I am so THANKFUL for this Mayo Connect forum. So much better than a few others that I have joined.
@ctsenior Yeah, I had a friend describe his experience as female menopause symptoms all compressed into one month. Definitely avoiding that unless I have to really go there.
@jcf58 Yeah, the MRI guided targeting seems incredibly important. Wish the technology wasn't so expensive with MRI, but that approach looks like a no-brainer approach for better targeting.
You made an amazing choice...congrats that you could go that route.
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1 Reaction@fritzo ADT for 6 months was quite easy for me. The SBRT was actually worse.
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1 Reaction@jeffmarc Holy smokes-wish I had found them sooner....but I know it will be helpful on the other side of surgery too. What a great organization -that setup sounds amazing.
Suppose I could hop on Monday night (night before surgery). Thanks for this great explainer-I'm in!
@fritzo
Get to the meeting 10 minutes before it starts. That way you’ll be the first person they talk to. They open the meeting at least 10 minutes early and people get their spot based on when they got there. New people are always first, however.
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