Yes! And you better start enjoying yourself pronto! 
Sometimes when it rains, it comes in sideways and makes a real bastard of itself.
FWIW (considering you probably don’t remember me) I wish you a speedy recovery, so you can get on with enjoying retirement. And I hope you find a lady who’s a hundred times better and sticks with you no matter what.
Well, I got a PSMA PET scan done the other day and, much to my surprise, it showed that there were no signs of metastasis. A nomogram after biopsy and MRI indicated an 80% chance that the cancer had spread beyond the prostate. It is claimed that the scan is 92% accurate for both positive and negative results so I’m pretty relieved. I’m still going forward with plans for surgery in mid-April. I can’t say I’m looking forward to it but I am looking forward to putting this behind me.
Great news, Mike!
I have my surgery scheduled for Monday. Yup, I will be glad to get it done and hopefully be recovered by the time the weather starts getting nice. But I’m not exactly looking forward to it.
Good luck @MikeF and @TroutMan with your surgeries! Are you both doing radical prostatectomy?
For me, the immediate, um, inconvenience of my prostatectomy was being catheterized for 10 days. That was very non fun. During this time my belly swelled up to pregnancy levels and messed up my abdominal muscles, still a problem to this day – it doesn’t matter what my weight is, I’ll forever have a paunch unless I do elective surgery on the muscles.
That aside, you know what to expect: incontinence which will slowly get better – do those kegles, they really really help. I was mostly continent within weeks, maybe because I did my kegles 3 times a day, 100 contractions each. Boring as all get out, but it worked. I still had leakage if I violently sneeze or tried to push a fart. Stand over a toilet when farting. I still do five years later. One of my prostate cancer support group summed it up: never trust a fart.
My ED slowly got better - quite bad for a couple of years, now I’m unreliably a teenager depending on the day.
Troutman - good luck and keep us posted. I’d be interested in hearing your experience, if you don’t mind sharing.
squeegee - I’m getting the radical by way of the Da Vinci robot. I’m told 6-7 days with the catheter. The only upside I see to that is not having to get up in the middle of the night to pee. I’ve been doing the kegels (5 second hold and 5 second relax) during my short commute amounting to about 100 per day which is was I was told to do pre-surgery Maybe I’ll up them but 300 per day? Jeez. Was that pre or post op? And I haven’t seen belly swelling as a side effect. Finding a toilet to fart? Oh, boy. I wonder what other surprises await. I’m pretty fit otherwise so maybe there will be fewer complications.
By the way, the doc said I will likely be able to go home the same day unless I want to spend the night.
Thanks, MikeF and squeegee. Yes, robotic radical prostatectomy for me as well. I spend the night in the hospital, and already have the appointment for catheter removal after a week.
I wasn’t advised to start the kegels before surgery, but I suppose they can’t hurt. Not that 5 days of them will make much difference, but I can’t drink beer for the week before surgery, so I have to find my fun somewhere.
I went with Rad rx plus hormone blockers for my Gleason 9 (4/5) lesion, a solitary nodule with no evidence of spread even locally. But that score of 9 does mark it as an aggressive variety. Long term outcomes from rad/hormone rx were as good if not better than prostatectomy for my age/co-morbidities. Hence my decision.
But it’s been no picnic. I’m halfway done with radiation now, which leaves me chronically tired, with bladder and colon spasms and skin irritation. Not as bad as chemo but not pleasant. As for hormone blocker side effects, the less said the better.
All the best to my fellow prostate cancer patients
Ugh, hope the radiation and blockers are over soon for you.
All the treatments suck in their own way, and it can be really difficult to evaluate the pros and cons, especially for a layman. I like that I’m involved in the decision, but there’s a part of me that wishes they’d just tell me what to do.
I get that, for sure. I suffer from knowing too much, frankly. And the more in depth I go, the more devilish the details. Which makes me burrow ever further into the depths. But I trust my Urologist and my Radiation Onc doc, and I have also consulted a lot of old friends in the oncology field, gotten second opinions on the pathology, etc.
I even got a medical oncology consult earlier this week, something not usually done unless there’s metastases, but I wanted to touch all the bases and get yet another opinion on the genetics of my particular tumor. Going by the book, I should be on hormone blockers for 18 to 24 months. But if the tumor genetics are favorable, perhaps I’ll decide to go off of them after only 12 months. We’ll see.
Surgery update: I’ve made it home after two days in the hospital. It was just supposed to be overnight, but they kept me an extra day. The surgery was successful, the doctor said he got it all, and he was able to do it with no nerve damage. So I’m relieved, and now I just have to deal with recovery.
Surgery details if you are interested
I was on the table for over 4.5 hours. They had me tilted head down/feet up at a 22° angle (which of course I was not aware of), so when I woke up my face was extremely puffy from all the fluid settling in it. My wife took a picture, and I wouldn’t recognize myself. I looked like a celebrity plastic surgery gone very wrong. That was mostly gone by the next day.
I have 5 incisions on my belly which were very tender on day 1 but are much less so by day 3. The worst by far was the gas they use to expand your belly during surgery. It takes a while for that to dissipate, and it was extremely painful until today. My bowels took a long while to “wake up” after the anesthesia so I couldn’t pass gas, which is why they kept me an extra day. I hit 8 on the pain scale yesterday, it felt like my insides were going to explode and I couldn’t take more than shallow breaths. I had to take oxycodone, which isn’t ideal because it can cause constipation and make the gas pain worse. Thank God the worst is behind me now.
Now I have to deal with this damn catheter for another 5 days, which sucks now and is going to really suck by the end of it. They want me moving around every hour to prevent blood clots. Getting up is a little difficult but getting easier each time. So far I don’t have the swelling issues squeegee described, so fingers crossed.
Happy to answer any questions. And thanks to @squeegee and everyone else who contributed to this thread, it helped to know what to expect.
Thanks for the update. I’m glad the procedure was a success. Of course, that is the main thing. I don’t recall but did you have the PSMA PET scan ahead of time? How soon did you get the pathology report back? How many lymph nodes came out? This is the first I’ve heard about the tilting bit. How does the gas dissipate? I’ve had my colon blown up for the scope but its obvious where that gas goes. If they can put it in there, you’d think they could vent it out This is also the first I’ve heard about any significant pain post-op. I’ve never taken Oxy but certainly not as a matter of principle. I just never needed serious pain killers. If its going to hurt that bad, give me the drugs! Good luck with your recovery and keep us posted. Six weeks until my date with the robot. Doing lots of Kegels, as ordered.
I was warned about post-op puffiness before my robotic surgery because I would be “standing on my head” (hopefully a bit of hyperbole). The explanation was that gravity would help pull surrounding tissue away from the prostate area, making retractors — obviously contraindicated if the goal is to keep the incisions small — unnecessary.
ETA: my advice is to have a birthday party when the catheter comes out because it really did feel like being reborn (even if continence is likely to be an issue for a while).
I seem to recall that my father had a good bit of puffiness after his prostate removal, too, for similar reasons.
Good to hear the surgery seems to have gone well, TroutMan!
I’m sorry to hear about your diagnosis. At 71, I’m probably high risk for that too. FWIW, I met someone in Daytona Beach that didn’t want to go the surgery route. His insurance paid for going to the Mayo Clinic where they treated him solely by radiation. It was pretty brutal according to him, w/ lots of whole body pain and nausea. But it worked, and he had been OK for 10 years when I talked to him.
If you go the surgery route, Viagra and Blue Chew should put you back in the ballgame. If the nerves are completely removed, one has a 60% chance of the drug being effective. That drops to 20% if the nerves are removed. So you do have options.
I’ve now done 16 of my 20 radiation sessions, and will be glad to be done next week. Bladder spasms, diarrhea, local skin inflammation, fatigue, headaches, myalgias are no fun. Then it’ll just be long-acting androgen blockers for another 18 months or so, periodic PSA checks and MRI scans.
My overall discomfort level on the pain scale is π. Low level, but irrational and it never really ends. Beats chemo side effects, though.
My heart – such as it is – is with you all as you walk this awful path.
This is an excellent descriptor of how I’m feeling too.
Sounds like we’re on the same schedule for getting the worst behind us, so I will raise a tasty wedge of cheese to you from afar next week.
This is terrific news! The more cancer they get, with the least collateral damage, the better.