I just got the bad news....40 years old

Well, you know my experience, check out my longer explanation in this thread - hopefully I got the page number right

https://www.healingwell.com/community/default.aspx?f=35&m=3869854&p=2

When an RO tells you surgery is best, and explains his rational, it's probably a good idea to listen to him. Especially an RO at Dana Farber.
Good luck with the surgeon meetings.

My uro is both a urologist and an oncologist at Hopkins. He suggested that surgery would be better for me too. I was 42. I consulted with another Hopkins onco before deciding on surgery. He was just as confident that he'd cure me with radiation, but he was worried about my age. "You're young and in good shape. You'll heal from the surgery and be back to mostly normal function in 3-5 years." What about years 1-3?! "You'll be fine there too. You might need some help from meds with erections during that time, but you should be functional within a short time. And within a few weeks you'll be totally continent. Basically, within 5 years, you should regain all function and to the level where you were before surgery." He was very confident of those statements. And I'm proof that he was spot on accurate. 5 years out and I never drip (never did) and I only take a half viagra as a safety net about 25% of the time. I count myself lucky, nevertheless.

Also, I wanted to mention something that he said to me that I recalled as I typed this. I asked him about the significance of the number of positive core samples. He said it was inconsequential in most cases. He said that as he knew that I had a nodule so he aimed for that a number of times to try to get a clear picture of the stage. So maybe 5 of the 12 samples were near the area of the nodule and then a couple others in generally suspicious areas and a few remaining on the other side in an attempt to see if I had bilateral disease. All the samples on the nodule side were positive and the others were not. But pathology proved it was bilateral and also 3+3. Percent of the core is more important, imo.

Anyway, good luck.

Mr. B, you've done your homework and made an educated decision. Good for you. I'm sure you will be equally diligent in choosing your surgeon. Looking forward to hearing about your many years with the new "C" word, that is CURE.

Jim

Good news. Choices can be hard.

At this point, just get it done.

Andrew

Wow Skypilot.....so you did about a mile per day while the catheter was in and then once removed you were doing 4 plus miles 7 days per week?

Mrbaseball220 said...
Wow Skypilot.....so you did about a mile per day while the catheter was in and then once removed you were doing 4 plus miles 7 days per week?

Prior to surgery, I was walking 4-5 miles a day and running about 2 miles every other day. That and trying to get a few pounds down and doing situps, leg lifts and starting to do some of the keggle exercises.

After the surgery with the catheter in, I got up daily about once every 2 hours, tried to walk around for at least 15 minutes each time. Having the catheter in took a bit of getting used to but actually not having to pee was oddly REALLY nice!. I worked up to about 10 minutes every hour by the third day, and was back outside and walking about 1 mile by the afternoon of the third day. I simply made a sache from a bathrobe, tied the bag to it (make sure the bag is well below your mid thing or else it won't flow out of the bladder easily), put it over my shoulder and walked around the neighborhood. First just back and forth in the circle, then out to the main roads up and down. Stepping up and down stairs and things was the hardest part. By the day I had the catheter removed (nine days) I was walking about 2 miles a day and had no problems of course getting to the hospital (driven, they don't want you driving with the catheter in). Once it was out, it was FREEEDOM!!!!

Walking progressed as expected and recovery followed. I sort of missed the bag a bit, it was terribly simple to just DRINK DRINK DRINK (tea, water, juices, no coffee or alcohol) and only fill the bag and then have it emptied (wife did it for the first 2 days since I didn't want to get up that often - god bless her) and then I just took it into the bathroom myself after that. It was fine. I ended up leaving the BIG 2L bag on most of the time as I was pushing about 8 liters a day and it was much easier to let that one fill and then empty. (pro tip, get yourself a 2-3L plastic drink pitcher at the store and just use that by the bed for the first few days to empty into and then dump the pitcher into the toilet. Hopefully, you'll have a helper for the first couple days. It's not a messy job, just an unusual one.

Also, as I was pushing so much fluid (recommended) I would set an alarm for the middle of the night to 1) empty the bag, as it will back up and that is uncomfortable and can be problematic)
2) take some of the pain meds, either the real ones or the ibuprofen and acetaminophen (you'll take both in serial most likely) KEEP ahead of the pain and the bag filling for the first 3-5 days.