concerned about life post surgery - Prostate Cancer A...

Prostate Cancer And Gay Men
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concerned about life post surgery

Hello everyone,

A search led me here and I knew i wasn't alone just needed to find others. So I'll say thanks from the start. I've been recently diagnosed with prostate cancer, and I am comfortable with course of treatment that my doctor and I have decided to take. In two weeks i will have the radical prostatectomy.

I am more concerned about the quality of life post surgery. I am not sure what to expect. The doctor tried to explain some of the side-effects. But that was a very clinical explanation of what can be done. Is there anyone who can explain to me in layman's terms what happens to my body after the operation. I am sure that there will be some things that will not be the same and others that might be. Can anyone shed some light on these things, ie E.D., incontinence, will i need to invest in a package of "depends", etc

thanks

Tovok31

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I hope you have seen specialists in other therapies as well. Incontinence last for more than a year in about 20% of men having surgery. Only 37% of men who have bi-lateral nerve-sparing surgery retain potency afterwards. Other common side effects include penile shrinkage and climacturia (pissing at orgasm).

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Wow thank for the heads up. This has been so fast and there hasn’t been much time to connect with other specialis.

Wow to think about the incontience will last for almost year is disturbing.

How long might ed issues last?

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Just to clarify - what I said was that incontinence will last for more than a year in 20%. Many of the remaining 80% will recover continence within 6 months. ED issues are permanent, with some recovery over time.

There is no need to rush into a therapy. Take your time. Decide not to decide for now. Talk to experts in the various therapies that make sense for you. What are your diagnostic details? Gleason score? T stage? PSA? % positive cores? Age? Prostate size? Where are you located?

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Some of these things I don’t know but what I do know is psa score was 7.1 I’m 54 yo and African American. Sorry six of the twelve biopsy specimens were positive for cancer. 5 of the 6 were scored at 5 and one was scored at 7 I don’t know if that is the Gleason score but I’ll look that up. I don’t know the size of the prostate.

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And I’m live in ne jersey but having the operation in nyc

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There is no Gleason score of 5 - it starts at 6. Your biopsy report should show something like Gleason score 3+4 (Gleason grade group 2)

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As my doctor describe this situation to me, he explained that five bisopsy specimens were low in grade, which he described as level 5, one specimen was graded at level 7, he did not mention anything to me about a Gleason score. But because of my age (54), my ethnicity (African American), and a PSA testing score of 7.1, the best course of action (treatment) would be to remove my prostate. This is what i know. I am sorry if I don't know more or have more information to give you at this time.

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You are undoubtedly already finding out that he results of an RP vary--but you are almost sure to have some incontinence afterwards--how long it lasts and how serious can't be predicted. And what help you get with preparation and afterwards (pelvic floor exercises) will make a difference. Your sex life will change--for one thing, there won't be any more come--i.e. you will still be able to climax, but no come will come out. You in all likelihood will not get as hard as before, but, again you should be prepared to get help afterwards, whether it's viagra or another drug, shots, etc. You should talk about these things with your medical team ahead of time. Your penis size could diminish some. Your options for help should be explained to you in terms you can understand by your medical team. Many of us have gone through this, and yes, there is life and sex afterwards. But it's pretty certain it won't be the same. Take your time, examine the alternatives to an RP, and good luck!

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Thank you greatly appreciated

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Hey Tovok31, Welcome to the group, and yes you are supported my friend. I must say I was extremely anxious about post-surgery life. I have to admit although there have been some challenges, i.e.- managing the 8 days after surgery with a catheter, (wasn't painful, just clumsy). I am about 2 1/2 weeks from surgery and although I have a little leakage (dribble) once in a while, I haven't found the need to wear pads. However, I do keep a small light one in my bag if I know I'm gonna be out of the house all day. 3 days after catheter removal I was directed by the surgeon to start masturbating to get blood into the penis. It is sort of like going to the gym. Check out the video I posted on here. I have heard some post-surgery stories that were great and not so great. I dont know how old you are, but most people I have spoken to personally with this seem to heal pretty quickly.

Stay positive, it really helps. I am confident my erections will return, Im already halfway there. LOL!

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And I’m 54

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Hey Tov, I’m 51, so I am pretty confident you are going to fare very well. Are u in nyc? If so I had Dr. Hu, great surgeon at NY Presbyterian. There are a lot of YouTube videos of him doing surgery. I was very anxious and a little angry that this affects African American Men at a 60% higher rate than any other race. My granddad died from it back in the eighties, so i guess my chances were even greater. But I’m passed that now and determined to live a happy healthy sexual life. Stay strong buddy, you got this!

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Darrell here btw

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Dear Dreamweaverman thank you so much that is the most encouraging news yet. My surgery is scheduled for a week from this Friday. Although I didn’t consult with other doctors I am at peace with the course of treatment as it stands. My goal is to be cancer free and I am determined to be so.

I am glad that things are positive for you and I’m praying and hoping it will be for me as well.

I’m sure I have and will have many questions I’m glad there is a place where some of them can be answered by men who know this experience.

Thanks 👍🏾😆

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Sorry to hear about your cancer but you are among a group of us here that are all in the same boat. My Dad died from it as well so I’ve been getting the PSA test done since I hit 40. I’m three months after the operation and I also found the catheter a bit tough and was glad to have it removed. After it came out I was dry for a period and then started to suffer leaking. At this point I’m down to one extra light pad per day and can do without a pad if I’m around the house but for part of the day need to be close to a toilet as I wee a lot. A small number of guys have no problem with incontinence and a small number have major problems leading to an additional procedure to sort it out. The majority are in the middle and with pelvic floor exercises can get control back within six months. I also suffer from fatigue but it’s not as bad as a month ago. My nerves had to be taken as my cancer had spread outside the prostate. Got a vacuum pump but it’s not great. Waiting to be called back to clinic to be shown how to inject a drug into my penis which guys on here have had success with. Again some don’t have as major an issue with ED and maybe you will be one of the lucky ones. The main thing is to get rid of the cancer and like any surgery the more experience surgeon has the better. The best of luck to you. Bill

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Thank you Bill

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Hey man. I am 9 days post robotic prostatectomy got my catheter out yesterday. It was so liberating. It is manageable. It is uncomfortable. It is a nuisance. But you can do it. (dont postpone something that can save your life. I had a very active sex life 12 days ago and realize things will be different. but will be ready for penile rehab. The penile shrinkage mentioned can happen from non-use and certain scarring that can hppen but your physician should be able to get you to different therapies. Ie pumps oe injections to get the penis filled and hard as it once was. Every case is not the same but stay optimistic as Iie here in my gray depends trying to determine hould I go stand at toilet and see if it runs out or enjoy the warmth of the urine. ( sometines you have to joke ). Stay positive. you will get through this and just when you think you are going to go nuts it si time for the foley to come out.

Afriend made me laugh today and told me there is a group of guys who like to see men in these depends. Go Figure.

I am thankful to be alive and will probably work out a little harder at the gym and be in sauna a little less. ( for a while anyway ) LOL.

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Thanks Dan

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Hi Tovok, all has been said. I only say in a few words:

I had surgery last April and gained full continence early July. For that do Kegel exercises while walking. They helped me the most.

As for ED. Still in recovery process but I had improvements. I can have a hard erection almost as before but not so yet for penetration because it is not lasting long enough. I had nerves spared from right side. I use the pump and have sex almost every day. Masturbation included as it is good to keep the blood flow.

So these were my bigger side effects’ worries. But most important we are fighting for our lives. I can never regret my decision and need to move ahead and hope for the best. Wish the same to you.

Paulo

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Paulo thank you. My primary goal from the moment I was diagnosed was to become cancer survivor and cancer free and not a cancer victim. So I do not regret any decision in the course of treatment chosen.

And thankful to the honesty of men like you my fears about life after surgery is easing. I’m still scared but I think it’s a fear I can live with. So thank you to you and everyone wha have responded and lent their support

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Hi Tovok, I had radical prostatectomy. It was a quick procedure - about 2 hours from going under to coming out of anesthesia, and I was in hospital for 2 days, just until my bowels were working again. Some things to expect: you'll have a catheter in your bladder while the surgical site of the urethra heals, which takes about 7-9 days, after which that is removed. You will be incontinent, and will need depends or equivalent - I started off with the heavy volume ones, and wore those for about 6 weeks, if I remember, then was able, once I knew the volume of incontinence was less, to decrease to moderate pads. Speak to your doctor about pelvic floor exercises - I was given some, as well as a sheet to document volume of incontinence - and start doing those as soon as you can, once the catheter is removed. It took me about 3 months to be continent again (except for the odd stress incontinence, so still wear a light volume pad during the day to avoid wet underwear, though don't wear pad at night). Your penis will decrease in length by around an inch, and there will initially be swelling of the penis, so if you are cut, appears like you've got a foreskin again, and even when the swelling goes down, the head of the penis is deeper in the skin surrounding it.

There was little if any pain from the procedure - most was in the skin site, nothing deep in the pelvis as I'd been expecting. I was lucky to get resorbable sutures in the skin incision, rather than skin staples, so didn't need anything removed later, and if you can get your surgeon to put those in, I'd recommend them. The catheter is uncomfortable, and the bag it's attached to is a drag; I was provided with a smaller bag which attached around my thigh, for going out, but when it started to fill it dragged, and the design of the one I had was poor so it didn't stay in a comfortable position. I just took off the 10 days after surgery and stayed home, but was able to get up and be around the house, and hung the catheter bag from the edge of the bed when I slept at night. Once the catheter was out, was good to go with depends...

Hope this helps.

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Yes this help so much. Gives me an idea of what to expect. Thank you

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