Welcome New Member Patrickm

In another thread new member Patrickm posted the below..

I’m relatively new to this forum and this club. I first started down the path of rising PSA levels last summer, having an MRI in the Fall, then a biopsy on XMas eve, then the confirmation of the biopsy results the first week of the new year. To me, it seemed prudent and desirable to (hopefully) get this issue in the past, so to have surgery sooner than later, so I could recover and be ready for action this summer when (again, hopefully) the pandemic will be subsiding. I’m 61 years old, but in fairly good shape. I was training for a marathon, but had to bail out of the training one month early due to the surgery. I was running up to about 18 miles and was otherwise healthy. I had my surgery on 2/17, six days ago. I was super impressed with the staff at the hospital and how kind and caring they were. I’m new to this type of medical thing, so I wasn’t sure what to expect. I remember getting wheeled into the operating room, where everyone welcomed me, then I woke up 4.5 hours later in the recovery room, surprised that it was all over. I had my surgery starting at 7:15AM, and was released at about 4:30PM. I go for a cystogram and a post-op follow up in a couple of days, which would be 8 days after the surgery. I am hoping I’ll have healed enough to have the catheter removed at that time. Before surgery, I learned a lot by skimming this forum and few other web sites. I wish I had paid a little more attention, mainly to the little details. I didn’t even know what a catheter was until a week or so before my surgery. The things I learned were: The first day of recovery, I felt pretty bad and getting up to empty the “leg bag” was a nuisance: Next time I should just use the overnight bag until I am more mobile. At first I was wearing flannel pajama bottoms and my wife had the nice and cozy flannel sheets on the bed, which made it practically impossible for me to roll over or slide sideways: Next time, I’ll skip the flannel. With the catheter, I find I sleep most comfortably wearing cotton boxers with the tube running down the leg, then wearing surfing “board shorts” over those, because they are slippery and have a little structure which directs the tube down my leg so I feel less “tugging” when I roll over or move around. I found that wearing the loose hiking pants with the zip off calves works really well: I can leave the calf off while at home for easy bag emptying, then zip the calf on for walks out in public. I have an Apple Watch, and setting a silent alarm (just buzz, no sound) every four hours reminds me to take the Tylenol. I find that if I don’t regularly take the Tylenol, different things get sore and it is better to preclude the soreness by taking the pain reliever methodically. (Each day, it is something different: the first day, it was my ab muscles and ribs. The second day it was my incisions. The third day, it was my t-shirt rubbing on my incisions. Etc.) Due to the catheter, there is no urge to pee or need to resist peeing, therefore drink plenty of fluids. Each day gets better and better, incrementally. The first day, I walked around the house, then next day I’d walk to the end of the block, then next day I’d walk around the block, today I went for three half-mile walks. Make sure to empty the leg bag before you leave the house or fall into a nap: The first day, when I wasn’t too mobile and had any idea as to how long the leg bag would take to fill up, it filled up during a nap. Fortunately, I woke up and was able to empty it without making a mess or causing any apparent damage, but it was a rude awakening. I do use a bucket for carrying the overnight bag around the house. When I take a shower, I hang the bag off the soap holder. Taking a shower is surprisingly easy, and it feels good to feel clean after each morning shower. (They used glue instead of stitches for my incisions.). Without having yet had the post-op follow up, I don’t know anything definitive, but my feeling is that everything went well and that I am on track to resume “normal” life. Another interesting thing about the surgery is the appreciation that I have for the support I have received, whether from the medical staff, friends or acquaintances, or just random people that I know that have contacted my to wish me well and hope that I have a speedy recovery. It is nice to know that everyone is on your team.

Welcome Patrick and I hope you have a speedy recovery!

I went to my 2/17 cystogram (no leaks) and post-op follow up, on the 8th day following the RALP. Both went well, I guess. The surgeon who did my RALP said that everything went more or less according to plan. My pre-surgery and post-surgery Gleason scores are 4 + 3. The cancer was approaching the left neural vascular bundle, but he is sure they got it all, and the lymph nodes they removed tested clean. The next step is monitoring the PSA levels, and no need for radiation at this time.

In this whole process, I’ve been impressed with the various medical staff members, facilities, etc, that I’ve come in contact with. Everyone is so nice, caring and seemingly well trained. After I met with the surgeon, a couple of nurses came in to remove the catheter. One (experienced one) helped show the other (new to this department) the ropes, then left the room. The inexperienced one removed the catheter, which was surprisingly painless, then told me I could pull up my pants. As I bent over to do so, a flood of urine came out. We were both totally caught off guard. I had read about incontinence, but didn’t really grasp it. I’ve never experienced anything like that, and they hadn’t warned me about it or told me to bring Depends or anything. After much scrounging around, she was able to find a diaper for me. It was like a scene out of a comedy movie, with me clamping my hose while she frantically ransacked the cupboards as we tried not to laugh. Her training and that one visit was the single weak link in this whole process. Each day I am dryer and need to change the diaper less often. I (being a civil engineer and architect) weigh the used diaper on a digital postal scale so I can calculate exactly how much I am leaking (30g = 1 oz). Tomorrow, I might try a shield instead of a diaper, as a test run. I visit a physical therapist in early March to help me tone the right muscles, but in the mean time, I’ve been doing the stop/start pee exercise that I’ve read of elsewhere in this forum. I appreciate the knowledge and experiences that everyone has shared. It makes me feel like I’m not in it alone.

Up until January, I had never discussed prostates, ED, incontinence, etc, with anyone other than my doctor. Now, it seems like it’s all anyone wants to talk about. During phone calls with many clients and contractors, when I explain my absence from work, they all share their experiences and thoughts on the matter. I guess I am part of the club now...

Post Edited (patrickm) : 2/22/2021 5:26:27 PM (GMT-7)

Welcome Patrick and glad you’re doing well. Having been as active as you have been prior to surgery will be a big help in your recovery process. It’s unfortunate that urologists frequently don’t prepare patients for what they’ll face post surgery and I’m glad to see a recent patient willing to pay it forward. I’m fortunate to have an RN for a wife and although we chose RT she’s been a tremendous help for all three of my joint surgeries. Several of my close friends and a couple of relatives have chosen RP and all have had various urinary issues. It’s common and important not to take it personal since prior to surgery you had three urinary sphincters and you’ve just lost two of them with the surgery. That’s another one of the things that urologists often don’t take the time to explain. I know mine didn’t when he recommended surgery and my wife picked up on when we were considering different treatment options. By the way women only have one sphincter and with exercise most guys can strengthen the remaining sphincter to work well. You’ve just had a major surgery so exercise with proper caution.

Patrickm, it sounds like you're right on schedule. Really. Looking back, even though I went back to work after a month, it was several months to be really where I wanted to be. 3 months or so after surgery, I did some travel...and wound up falling asleep driving and had a bad wreck.

Even though the RALP is better for a lot of reasons, prostatectomy is still major surgery--and it takes time. You will continue to have aches and twinges is odd places as your body adjusts to the missing parts. Your lower body aches may be from the cialis--some men have that. To tell, stop it for a few days and see what happens.

Hang in there....you'll get there.

patrickm - I did an informal survey here after my surgery about recovery time and feeling back to normal. You may find it helpful to see the large spread between people and recovery measured in weeks and months, not days.

https://www.healingwell.com/community/default.aspx?f=35&m=4093972&g=4095084#gsc.tab=0

Patrick. Just a few words on my experiences. I had RALP March 2016. All went well, no pain. Incontinence for about 12 - 15 weeks, which steadily improved as time went by. I "graduated" to a twice folded paper towel inside briefs for a bit of stress incontinence. Only a drip or so after a long day is typical. If doctor has not mentioned, be careful with activity, especially lifting. I followed doctors orders on limited weight, but still ended up with a hernia at navel incision. No idea what caused it, but I expect not uncommon. Hernia not bad, no pain at all, but not so pretty.
Prayers for great, speedy recovery,
Mack

Hello and Welcome, patrick! I'm glad things are going fairly well. Let's us know your first post-op PSA when you have the results.

All the best,

Djin

Djin — my PSA test yesterday (8 weeks out), was .01. F8 — not trying to dis anyone, just explaining the experiences from the people that I talked to that contributed to my decision.

Patrick, I had the same question: is there a "<" in front of the 0.01. At 8 weeks, it may or may not be there....but it if is, that is a great sign.

patrickm said...
Yes, that < is there

Our favorite character!

Patrick, can you check whether your PSA was <0.01 or <0.1

Also, do you have the name of the lab that performed the test? I'm not familiar with a large commercial lab that has <0.01 as its undetectable, but perhaps it was a single institution that performed the test.

Thanks,

Djin

Having an undetectable PSA at this point is a cause for celebration. You should be very happy right now. Now begins the waiting game. Keep getting your PSA tests at the interval recommended by your doctor because it is possible that it will start to rise, and you want to catch a recurrence early. For now, however, a celebration of some sort is in order.