I had a similar experience in which the RO recommended that I have surgery. I am 12 weeks our from my RALP today, and my leaking has really tapered off in the past week. One thing that helped me was to lie on my back, with my knees bent, put two fingers on my abdomen just inside the pelvis, to feel the ropey muscle there (not sure of the name), and to ensure that it flexed when I kegeled. Apparently it fires along with the sphincter muscle. With my PT’s help, we found that starting a kegel, then sucking my belly button inward, would allow me to find the right muscle. We also used ultrasound one day, to look at it when I flexed, so I could find the right one. Although I have numerous exercises from the PT, I find that focusing on the kegel regardless of what I do (sit-ups, planks, squats, lunges, running, etc) really helps tune up the right muscle.

Congrats on making a decision. I found that gave me the ability to focus on beating the PCa, as opposed to wondering what the heck I was gong to do.

Since you've made a treatment decision, I don't see any point in sending your slides to Epstein. (I couldn't tell if you were still asking if you should do that.) Following your surgery, you'll get a pathology reports that's better than any biopsy.

patrickm said...
I had a similar experience in which the RO recommended that I have surgery. I am 12 weeks our from my RALP today, and my leaking has really tapered off in the past week. One thing that helped me was to lie on my back, with my knees bent, put two fingers on my abdomen just inside the pelvis, to feel the ropey muscle there (not sure of the name), and to ensure that it flexed when I kegeled. Apparently it fires along with the sphincter muscle. With my PT’s help, we found that starting a kegel, then sucking my belly button inward, would allow me to find the right muscle. We also used ultrasound one day, to look at it when I flexed, so I could find the right one. Although I have numerous exercises from the PT, I find that focusing on the kegel regardless of what I do (sit-ups, planks, squats, lunges, running, etc) really helps tune up the right muscle.

Glad you're 12 weeks past this! I've been doing the exercises as directed but have not seen a PT.

Pratoman said...
Since you've made a treatment decision, I don't see any point in sending your slides to Epstein. (I couldn't tell if you were still asking if you should do that.) Following your surgery, you'll get a pathology reports that's better than any biopsy.

I was on the fence about getting a third opinion. At this point, I think I will pass on it. Thanks for this info.

DjinTonic said...
So hope for a downgrade isn't unrealistic dreaming at all.

I'm crossing my fingers!

That's great, GW!

I, too, had a spot show up on one rib in my bone scan and CTs. The radiologist did a series of x-rays on the rib from different angles right after one of those scans. He (and my uro) compared the images to a chest CT I had some 8 years prior (for a persistent cough, if I remember). The lesion matched up and had not changed in size. It was concluded this was an old bruise from an injury or even an old fracture. Also, I had had a number of negative prostate biopsies in the intervening years, adding to the unlikelihood of it being a met.

The tracer in bone scans is picked up by quite a few non-cancerous conditions, e.g. arthritis and old bone traumas can appear as "hot spots." The traditional bone scan will most likely be replaced by one of the newer PET scans, such as 68-gallium-PET, for the diagnostic workup. It has the advantage of being more sensitive, so it can detect smaller bone mets that a bone scan will miss. In addition, it's one-stop imaging for both soft-tissue and bone mets.

The hold up until the recent FDA approval was, I believe, that the 68-gallium radionuclide has a very short half life (just over an hour), so tracer generators have to be built on-site, increasing the cost outlay. The one downside of this PET scan is that the radionuclide is eliminated primarily by the kidneys, so the entire bladder can "light up," which can make it very difficult to detect lesions in the bladder neck/bladder and adjacent lymph nodes. (The 18-F tracer in Axumin scans is eliminated via the liver, so while it seems to be less sensitive than the 68-gallium PET scan, it doesn't have that drawback.)

Djin

I still remember the call after my scans: "your scans are fine. You do have bone deterioration in both shoulders and your left knee, and you have a hiatal hernia". I said, "No surprise there".

GW: that's great, now get as healthy as you can between now and surgery. Especially do as much walking as you can to get your pelvic muscles toned up..and learn how to do kegals.