Treatment decisions and questions

Hey there, everyone. I hope you all are well.

I wanted to let you know that my husband is opting for surgery. As of my last post, we were thinking that the prostate cancer research team at the National Cancer Institute (NCI) at NIH was going to do a tumor board review for my husband, but when the patient care coordinator called us back, she offered to enroll Paul in a clinical study (no experimental treatment) and have their principal investigator, a “nationally/internationally renowned expert” in RALP procedures, perform his prostatectomy. That was enough to tip the scales in my husband’s mind in favor of surgery.

They’ve done a second review of Paul’s biopsy slides and identified 3 cores as Gleason 3+4. (All were deemed Gleason 6 by the local pathologist.) That didn’t surprise me, with the number of positive cores and high percentages, not to mention PNI in the original path report . I was wondering when you run the MSKCC and/or STAR CAP nomograms if you plug in the highest Gleason score. Does anyone know?

So now we’re preparing to head to the DC area for surgery in late September, and Paul’s doing Kegels 3x/day. We haven’t gotten info from the surgical team yet regarding post-op stuff. Since we’ll be very far from home, I’m trying to figure out how to prepare for post-op issues. The questions I have thus far are:
1.Will Paul be okay taking stairs after he’s discharged from the hospital? We have a free place to stay close by the NCI but there are stairs to the bedroom.
2. Should we have incontinence management products on hand? How much/what kind?

Answers from people who’ve experienced RALP recovery, especially those around Paul’s age (55) and in otherwise good health when they had surgery would be a tremendous help! Does anyone have other post-surgical recommendations based on their experience?

Thanks so much for your support!

Great to know, Thanks, Ken!

Thanks so much for the suggestions! They all sound eminently sensible and are extremely helpful. I appreciate the time you took to reply.

Thanks, Michael! Our patient care coordinator called back since my original post above and said they can put us up in their on-site family lodging while Paul has his catheter so he won’t have to contend with the stairs. Good news, especially since it’s right by the hospital where he’ll have his procedure, just in case the catheter goes wonky.

Vee, those on site lodging locations are a great choice for people travelling for treatment. In many cases, there is actually a medical person at the location for situations that might come up.

I'd also add to my experience that I was 95% plus continent and 90%+ ED free at 6 weeks. Non detectable PSA at 3 months and since.

One thing to remember is that RALP surgery IS major surgery. It is NOT a walk in the park, it takes a lot out of you, and it takes quite a while to really be back. I don't think I really felt 100% for 6 months.

Take stool softener. That 1st BM is a doozy. Thought I was going to blow the catheter out. A Lazyboy chair is where I slept for a week. I could not lay down b/c of the pain in my surgical area. I had no such pain just sitting in the chair. Walk, walk, walk. Down the hall, around the room and outside for fresh air when able. Hopefully he can get off pain pills and on to ibuprofen/acetaminophen quickly. I was wisely advised for the first 2 nights do NOT wait for pain to take a pain pill. Even if he doesn't feel pain 4 hours after the first pill, take another one, especially at night to help sleep. When ready to get off the heavy drugs (which you want asap) I took 2 acetaminophen and 3 ibuprofen at the same time. Best of luck.