This surgery is a beast

Finally had my robotic surgery 12/15/15 at NIH in Maryland, Dr. Pinto was the surgeon.
He was very optimistic, said the surgery went very well (under my circumstances). He had to take over 50% of the nerves on the right side and did an extensive lymph node removal but all in all he was pleased with what he saw. Of course, the pathology report will tell the true tale. They said I will have that by 1/11/16.

This surgery is a lot tougher then I heard through the grapevine initially. Fortunately I did have one acquaintance who had the surgery 1.5 years prior mention that even though all went well for him and he feels 100% back to normal that the surgery was a bit of a beast so I was some what prepared. Also my 'mother in law' had hernia surgery in Sept. and she went through a lot with the stomach incisions and bloating and pain so that also gave me a heads up as to what to expect.

I guess since I got very good at taking everything one step at a time with this whole cancer process I did not dwell on the surgery itself, it was just a necessary evil. Dealing with the initial pain (I stayed on pain killers for about 11 to 12 days, but started weaning slowly off them about day 5 to 6), The bloating of the stomach for days putting pressure on the incisions and surgical areas. The catheter itself was also an unexpected pleasure, but thank God I was in a Cancer hospital and was able to feel comfortable enough to deal with the many issues I had with that for the week (excessive leaking, the portable bag giving me problems also so I stayed mostly with the carry-on, the couple of times it needed to be flushed because the urine stopped coming out, etc.). The constipation, last went on Monday before surgery and finally begged for a suppository on Saturday (I was already on the stool softeners), and I finally went but was back to being constipated for days after. Mira-lax finally helped plus weaning off pain killers probably helped also. The constipation just contributed to the pain in the incisions and surgical areas. Also dealing with some numbness and sporadic pain in the surgical areas. I was totally unprepared for the swollen testicles that appeared a couple of days after surgery, yikes, talk about discomfort.

Now a little overs 2 weeks out and dealing with the diapers and urinary incontinence and some of the depressing moments that come with all of that. Fortunately the pain is gone, bloating and constipation minimal.

I will say I am so thankful that I had my surgery at NIH because since it is a trial and everything is paid for and there is no insurance to deal with they take GREAT CARE of the patient. Since I was out of state they checked me in the hospital noon on Monday, cleared me out all day, wheeled me down for surgery Tuesday at 7am, got out of surgery about 4:30pm (or so I'm told, 5.5 hours actual surgery time). Thursday they were going to put me on a pass from the hospital (not discharged, they keep a room available if needed) so I could go to the Family Lodge across the way (where they put up my girlfriend and her Dad); on campus until the catheter could be removed on Tuesday the 22nd, but I did not feel all that great and asked if I could stay in the hospital one more day because the care I was getting from the nurses there was absolutely fantastic. They said there was no medical reason for me to stay but if that is what I wanted, no problem; so I stayed in hospital until Friday late afternoon/evening. I CANNOT IMAGINE how most hospitals release patients after one day with this surgery, it was hard enough at the hospital with the excellent care, I would have been miserable at home. Also grateful that we could stay in the lodge until the day after the catheter removal and I had access to the Urology Drs. and could walk back into the hospital and ask the nurses anything at any time and they would take care of me on the spot if needed.

I am so thankful for the care I received at NIH.

Jim H

Wow. You did have an exceptionally hard time.

Most of us awoke from the surgery, got dressed, and went home.

(OK, I'm just joking, but you did have a hard time!)

Mel

Welcome to the other side. Each day gets better from here.

Hang in there.
Andrew

Maybe so Bob, a friend of mine had shoulder and knee replacement...the immobility with the shoulder almost killed him...but he wasn't pissing his pants. :) I do realize that not everyone suffers from incontinence for too long a time...but is it usually longer than the shoulder recovery? Even a little incontinence is anathema to me. LOL

PS He's pretty good now, though,with no lingering SEs

James, it sounds like you've got a great attitude and a great chance for good results. Let us know what your path report is when you get it.

Just got my pathology report over the phone today.

The Dr. said it was the best possible path report I could get under my circumstances.


Both areas of the prostate had cancer.


Margins clear
ECE negative
SVI negative
31 lymph nodes out, all negative
T2c

No gleason score on path report since I had the 6 months of hormones.

Targeted biopsy prior to trial was a 4+3

Emotionally exhausted, but in a day or two I can pick myself up, dust myself off and move on to a better year. 2016 here I come.

ps...just an update on my progress just over 5 weeks out of surgery.

Urinary incontinence is steadily improving. Usually 1 to 2 diapers in a 24 hour period and 1 to 2 pads. I always use 1 pad in the diaper (Depends underwear type diaper, Depends heavy pad) and when I take out pad I use the diaper alone and start over with new pad/diaper when that is done. I never let them get soaked unless I can't change them fast enough while out. I think I'll be in great shape by 3 months.

ED..haven't even wanted to try, probably combination of drugs still in my system and I want other issues cleared up first. But I do know my libido is starting to come back some, so I think when urinary issues are clear I will be ready to try. I am optimistic.

Energy ok, still somewhat low but probably combination of hormones in system and surgery. But mentally I have been more willing to do things and put forth the effort.

I think I am in a good place. Eventually, after pathology celebration; I can move on to the every 3 month psa anxiety. (And hopefully every 3 month psa celebration)...Jim

Thanks Life/Gemlin,

Not sure either on the gleason score. Dr. said they do not do a gleason score to a prostate that has had treatment already, I can guess that since the hormones destroy some of the cancer maybe they think it would not be an accurate and true reading of what they were treating. But that is my guess, I'm sure someone here with more knowledge would know. I will remember to ask when I see them in the 3 month followup...Jim

Congrats as that looks to be a great report! I'm no surgery expert, but that's a lot of lymph nodes they took, but how great to know that all 31 were negative!

Almost 7 weeks out, down to 1 diaper and 1 pad a day. Most times they are not wet much.

Still no attempt to see about ED, but the thought is coming to mind.

Energy not too bad, still think I get tired fast but some is from the after affects of the hormones and the rest just being out of shape from the surgery.

I did shovel my driveway last weekend, took a total of 6.5 hours; big driveway and about 24" of snow. It was just about 6 weeks out of surgery so the Doc. suggested I take a lot of breaks, so I did it over 2 and half days, 1 to 1.5 hours each time. No fun even when I'm in shape.

Anyway, just bumping this up in case Sammyswife wants to read a little on the post surgery recovery....

JamesE said...
Almost 7 weeks out, down to 1 diaper and 1 pad a day. Most times they are not wet much.

Still no attempt to see about ED, but the thought is coming to mind.

Energy not too bad, still think I get tired fast but some is from the after affects of the hormones and the rest just being out of shape from the surgery.

I did shovel my driveway last weekend, took a total of 6.5 hours; big driveway and about 24" of snow. It was just about 6 weeks out of surgery so the Doc. suggested I take a lot of breaks, so I did it over 2 and half days, 1 to 1.5 hours each time. No fun even when I'm in shape.

Anyway, just bumping this up in case Sammyswife wants to read a little on the post surgery recovery....

thanks for the bump up and I read it all and wish you always health and good PSA scores for many years to come, and I hope your friend is doing well also.....Joyce

sammyswife said...
....minimally invasive they call it? but its surgery!

The ones performing it call it that, not the ones receiving it.

I've never heard of prostate surgery being 'minimally invasive'. Compared to heart valve replacement, maybe.

I've also heard it said that prostate surgery is as complex as brain surgery, because of the tight spaces they are working in and the technical skill required to do it right.

Be careful with the opiates (oxycodone, percoset) because they can cause constipation. Push fluids and fiber and stay on the stool softeners.