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Pre-surgery Predictions: Anxiety mounting before surgery

Posted by ridersup @ridersup, Jun 19 7:05pm

The doctors have used MRIs, biopsies and pet scans to determine that either radiation therapy or surgery is warranted and a positive outcome is “likely”.
I’ve chosen the robotic surgery. My fear is that we’ll find out after the surgery that things are out of hand. Do I just go with “likely” and suck it up until after surgery? It’s in 10 days. The anxiety is running like a finely tuned engine. Also, any info on NYC based groups would be appreciated. Someplace to talk face to face with those that have gone through this.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

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ridersup | @ridersup | Jun 21 5:47pm
In reply to @fritzo "I had surgery two months ago. I was actually locked in completely on surgery as the..." + (show)
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I had surgery two months ago. I was actually locked in completely on surgery as the best option for my situation (3+4=7, contained on imaging, somewhat aggressive profile with Decipher score of .61) I chose surgery because I felt it gave me the best treatment options if I had recurrence.

Short version: everything went very well. But, there were bumps in the road during my decision process.

Four days before surgery, in an online support group meeting, the moderator (who provides medical care in hospital settings) and a focal center doctor did a 90 minute presentation explaining that focal therapies are where everyone should start (small caveat of if you qualify) because surgery is so terrible. It was literally 90 minutes of focal therapy great, surgery bad. At the end, the moderator told me that I need to reach out to my surgeon and cancel if I had doubts, even cancelling up to the point of being rolled into the operating room. (he knew nothing of my imaging). I didn't have doubts until they told me for 90 minutes that surgery is bad and Focal is good. It shook me up. I then had to do a bunch more homework to realize many things;
• Many insurance policies do not cover focal therapies because several are still considered experimental.
• The recurrence rates after focal treatment is really high (so it's sort of kicking the can down the road approach)
• And finally, my cancer location made me not a good candidate for focal.

Which is not to say that there aren't tons of people who get focal therapy and have great success. It just wasn't right for me and I didn't like the recurrence numbers. Focal might be right for you. It just wasn't an option for me.

After that, I was locked back in on surgery 100 percent. Yes, recovery takes time and managing the side effects takes time. In my case, my surgeon said that my post surgical pathology report was "as good as it gets." I was very fortunate and this isn't the say yours will be the same. But, surgery was the right choice for me.

If you don't have spread past the prostate, I've heard people describe surgery as the choice of doing the surgery, getting through recovery and then living your life. But, everyone is completely different. Their pathology, their numbers and how their body responds.

So, I don't know your medical pathology, so I really can't advise what is right for you. All I can do is share my decision process.

Whatever you decide, you just have to own it and move forward. Hang tight-you got this.

(side note: when I told my son, who is a rehab doctor about the support group moderator and what he did , my son said that their behavior might not qualify as malpractice, but definitely was unethical to advocate medical treatment without knowing my pathology and medical situation.)

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@fritzo
Thank you for your story. I’ve been repeating “own it” in my head since reading this yesterday because it has great value to me. I’ve got great support at home but there’s nothing like hearing from those that have lived it.

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tattodice | @tattodice | Jun 21 5:51pm

You will be on the other side soon! Sharing your experience and strength as one who lived it. Praying for you.

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rlpostrp | @rlpostrp | Jun 21 9:37pm

Don't worry about that which you have no control over. Guys enter surgery with a Gleason Score of 7, 8, or 9. A Gleason 9 patient can come out clean with the cancer still contained within the prostate capsule (no Extraprostatic Extension), which means no surgical margins, or other horrible pathology. But...a guy like me with a Gleason 3+4=7 with only 10% of the cells being level "4", ended up with Extraprostatic Extension, Surgical margins, and left seminal vesicle invasion. So, b bottom line is: you just don't know. If God is in your life - or even if he is not yet - pray. To once again quote what I have quoted before from the 1984 movie "A Passage to India" says: "You can do what you want, but the outcome will be the same." Meaning more simply: "what will be, will be." You can drive yourself crazy with "what if's" that will worry you to the bone. Try not to. You have no control, so you just need to pray and hope for the best, and expect the best, then deal with any discrepancies. Good luck to you.

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fritzo | @fritzo | Jun 22 7:51pm
In reply to @ridersup "@fritzo Thank you for your story. I’ve been repeating “own it” in my head since reading..." + (show)
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@fritzo
Thank you for your story. I’ve been repeating “own it” in my head since reading this yesterday because it has great value to me. I’ve got great support at home but there’s nothing like hearing from those that have lived it.

Jump to this post

@ridersup Yeah, I'm still living it 🙂 But, there is nothing like hearing the news that the cancer has been removed and you have no detectable spread.

I've also made so much progress since surgery...so incredibly grateful for all of the good support on this forum. Lots of good souls hang out here.

On my surgery day, my procedure was delayed by an earlier surgery. I had run off to the restroom dragging my IV pole in my hospital gown. While I was away, the surgeon showed up to talk with me and the family. I came rolling back in and joked that I had tried to make an escape....we laughed about it. After that, they fed a little sedative into my line and I woke up in recovery, but I actually don't remember that too much either.

Recovery takes some time...but we're all here for you. You got this.

So, the surgery part is cake because you you're out the whole time. You got this.

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