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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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Not easy, but once you’ve reached your decision go forward and don’t look back. I had a similar situation when I was undergoing major staging surgery for lymphoma many years ago, and a person who was a long term survivor of my type of lymphoma told me “ I decided not to have that surgery.” It was two days before the operation. I panicked and almost backed out, but ultimately decided to have the surgery. It really alarmed me, and today they no longer perform that surgery for that cancer, so I feel your pain. In the end I am glad I had the surgery. Don’t look back! Good luck.
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4 ReactionsFritzo : ))) ! How are you doing 💗 ? I hope you are well and cozy and getting ready for discharge home this afternoon 🍀😊
Thinking of you and still sending vibes !!! : ))))
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2 ReactionsReading earlier posts about how hard it is to choose a treatment really drove home how unusual my prostate-cancer experience has been.
Things happened so fast for me in 2021 that we had to start with emergency debulking surgery for the lesion on my spine before we even knew what kind of cancer it was. Then we had to do the post-op radiation to my spine within in 4 weeks of the surgery.
Meanwhile, as soon as the biopsy result came back (2 days after the surgery), they started making arrangements for me to go on Firmagon and Erleada, because my cancer had been so aggressive and moved so quickly that they were worried about more lesions popping up. Meanwhile, I was paralysed in a hospital bed and fighting weeks of serious post-surgical complications.
The only real choices I made at the start was when I first met the oncologists and told them I wanted to fight as hard as possible, and when I agreed to join the IRONMAN study. Later, I said I did want to do radiation to my prostate as well, and it happened 6 months after the debulking surgery.
So I never really had the chance to join a forum like this or search the web for symptoms and treatments. They just kept wheeling me in a stretcher to different tests and appointments (sometimes several in a day).
Everything I learned about my treatment — that it was still new/cutting-edge in 2021, that it was based on just-published findings from the TITAN and STAMPEDE trials, that oncology was just _starting_ to recognise "oligometastatic" as a distinct category, that I was getting then-emergent treatments like "doublet therapy," "metastasis-directed therapy," "primary-directed therapy," etc — I found out after the fact.
I'm just happy I was sent to a major cancer research centre (I didn't even choose that — they bundled me into a decommissioned ambulance used for patient transport and drove me across town; it was all a race against time).
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8 Reactions@northoftheborder That's a heck of a story AND it has a happy ending. So glad for you!
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3 Reactions@surftohealth88 Hi everyone, I'm post surgery and doing OK. Dealing with a lot of abdomen pain and rolling bladder cramps coming in hard and fast, so I've totally been off the grid.
The good news is the surgery went incredibly well, my care teams has been so kind and I'm so humbled by everyone who has reached out-including my family here.
Surgeon said surgery was nerve sparing on both sides, cancer was contained within the prostate and they left the lymph nodes because he saw nothing concerning. There center at Northwestern is really an amazing setup.
I know abdomen/cramp pain is variable for patients (other fellow I passed in the hall did't suffer from much), but it's getting slowly better.
I'll share more hopefully tomorrow.
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20 Reactions@northoftheborder
North - it is so terrible what you had to endure 😔😢 and you came out victorious and strong and your spirit soars high regardless of all adversities. 🌟
You are perpetual inspiration to all of us here 💗 !!!
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6 Reactions@fritzo
Yeayyyyy !!! : )))) I am so happy for you 🙌 ! Every new day you will feel exponentially better 😃. Belly cramping will get better fast - gas is just moving from abdominal area into the guts and trying to escape, try to walk as often as you can, it helps a lot with gas dissipating and also "passing" - don't hold it in due to shyness since it is important to release it. Super fantastic news about cancer being contained and sparing both sets of nerves too ! Now you can finally relax and concentrate on your rest and healing : ))) !
Wishing you super fast recovery and zero pain tomorrow. 💗
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5 Reactions@surftohealth88 What she said - walking is the best for a speedy recovery!
Phil
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1 Reaction@heavyphil
Definitely be up, if you are able to step outside for the walking with your companion, the fresh air is great. Before you know it, you will be saying goodbye to your companion.
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2 Reactions@fritzo - excellent news, thanks for the update!
With nerve-sparing on both sides, that should help with not just the ED, but the incontinence recovery as well. Hopefully, you have a shorter recovery time for both of those.
Expect your belly to be a bit distended for several days, as it takes a while for all the stuff they pumped in there to work its way out.
Also, get ready for your scrotum to swell up to the size of the Goodyear blimp…that’ll go down with time as well, but it can be pretty alarming in the moment.
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