Continence recovery

[JR0912]

After a biopsy found I had Gleason 7/8 prostate cancer in the right side of the prostate and had my prostate removed July 7th last year. I had terrible incontinence but continued to do the kegels and now I only use a pad when doing walks or other exercise. Throughout the day I can get by with the Tena shield which keep me from worrying but I would eventually like to get back to being continent. I was just wondering if anyone could let me know if there is continued recovery from incontinence after the first year. I still do the kegels once in awhile but I am not sure if they are really changing anything. I do know that there are diet changes such as no alcohol and no soda that are supposed to help. If anyone has some information about continence recovery and has had recovery in their second, third, or latter years I would appreciate hearing your experience. Thank you.

[Dr_WHO]

I am in a similar situation. G 8, T3N1. Surgery Feb. 2016. Was gaining control until I had 38 rounds of radiation, then bladder improvement stopped. Still wearing pads and having minor leakage. I think that if I did not have radiation I would be totally dry now.

[JR0912 in reply to Dr_WHO]

I had a genetic test called Decipher that tells an individual what the chances are that the cancer will return and possibly metastasize. That came back high risk (17% chance it would return). My urologist wants me to have radiation which to me makes no sense as they don't know that they are radiating good cells or possible cancer cells. The results are likely increased incontinence or worse. I told him no and that I want to watch the PSA numbers. Not really sure I could deal with heavy incontinence the rest of my life. Right now I can get by with shields which are so much more comfortable than pads though if I am too active I still use a medium pad. Not great but I am learning to live with it but it would be better if I didnt need shield or pads at all.

[kenner in reply to JR0912]

I've had 5 bladder operations to remedy my incontinence. I still have to wear a medium pad 18 years after my Radical . When it is warm out & I try to be active I suffer with heat build up in the groin area. I am now 66 with a PSA at 0.29.

[JR0912 in reply to kenner]

One of the things that saved me is that I enjoy swimming especially when it is warm. That takes care of the heat buildup for awhile but I have the same issue as you. If I am working in the yard or doing something active I will sometimes take 2 showers a day. Also, if a rash forms I end up using hydrocortisone cream if it gets too bad. Also, wearing loose fitting clothing.

I am not happy to hear you had 5 bladder operations. My urologist tells me they can put in a sling or something else (artificial sphincter maybe) after the radiation and that should fix me. What type of bladder surgery did you have? Did the surgeon tell you why he/she didn't feel it was successful? Thanks ahead of time for your information and good luck. If you haven't tried swimming you might. It's great exercise and it helps take your mind off the prostate related problems as well. If you aren't a good swimmer you can get 1 on 1 lessons and in no time be able to swim well.

[Break60]

It's very unusual to have this problem for so long. Did you ask your surgeon if he ran into any problems during surgery and if he recommends a solution?

Bob

[JR0912 in reply to Break60]

I haven't asked him point blank but I will next week when I see him. After surgery he told me everything went well and the pathologists report said the margins were clear but I didn't ask him if there had been any problems because he said it had gone well. Thanks for reminding me I should be more direct.

[JR0912 in reply to Break60]

Talked to my urologist and he feels bad I have incontinence but said it could be the angle of the urethra and that everyone is different. He still wants me to follow up with radiation. My GP does too. Hard to argue against radiation when both my doctors twll me to but I'm worried that incontinence will be a permanent part of my life not to speak of ED. I think I need to see an oncologist.

[Geoff22 in reply to JR0912]

I had radiation 6 years ago (Gleason 8). PSA dropped to .13 but then started climbing to 4.26 this summer. The urologist recommend cryotherapy (spotted some cancer left in the prostate with a 2d MRI. The bone scans and MRI's didn't spot anything else in my body) I had the same concerns about side effects. I also suspected that there was more cancer outside of the prostate. But too small to be picked up on a scan. But I went ahead and had the cryotherapy (6 weeks ago). I do have some incontinence. I hope it improves. Fighting cancer is like trying to win a football game when the odds aren't on your side. You need to take the shots and even hail Marys because sometimes they work. I get my psa test this Friday. If it comes back pretty low than the incontinence is a small price to pay

[JR0912]

Thanks. Before the surgery the doctor told me because I was young (61) there was a high probability I would recover without incontinence. I did read one study that says it can improve up to 18 months. I'm going to hang my hat on that one and hold out hope for improvement.

[Break60 in reply to JR0912]

I still would ask surgeon why and if you should do something else.

[Hidden]

Hi JR,

Let's not confuse incontinence with continence. I was Dx with a blocked bladder and was not told, and was treated with incontinence meds, for over two years. The issue was, I was so continent, I couldn't be any more continent. When I wound up in the ER, a cat scan showed my bladder distended. When I was catheterized, I gave up 2 1/2 quarts of urine and blood, all because of a few stupid sob Urologist's. On top of this, I just found out a few weeks ago, I was originally misdiagnosed with PCa in my lymph nodes. My biopsy report said the lymph node adjacent to the seminal vesicule was questionable. Does that sound like surgery was out of the question? No, it says to biopsy the lymph node, and go from there. That was not the case.

Today, seven and a half years later, I wonder what would have been, had I had the surgery. No one can say, but I should have at the minimum, been advised very differently.

Joe

And, then I said to myself, he said, continence recovery. Oh, yea, recovering continence!

[Break60]

Sorry to hear of these problems. Really sucks .

Bob

[spm58]

Hi everyone,

I know I’m late to this party but I have incontinence as well and waiting on radiation for that reason. I had surgery early part of July. I was doing kegel exercises but recently went to physical therapist who gave me new exercises. I’m already doing better at control. Now I have 5 friends that have had pc and all had radical devinci prostate removal. Four of them still have leakage one to three years post surgery. I feel it’s a lot more common than you think. Try a different physical therapist recommended by a urologist or oncologist. Good luck!

[JR0912 in reply to spm58]

Can you tell us the new exercises you were given that helped?

[spm58 in reply to JR0912]

Sure can ! They’re actually quite common but I wasn’t told to do them so I didn’t. New pt gave me four new exercises for 3 weeks and I think she will add more next visit. Send me your email. Here’s mine [e-mail]

[Robertleeb]

Hello JR

I am about half way through my radiation and starting to deal with incontinence . I never had the surgery, I am getting full pelvic radiation because my Gleason was 8 but only one sample was positive in the biopsy. It started about 3 weeks into the radiation and now I am learning to deal with it, hoping it will end after a month away from the radiation. I know the radiation is hitting on the urethra causing it to be effected or weak. oh yea I have to have my bladder mostly full during the radiation so you can imagine timing is crucial. I do wear pads too , I don't want to have a car accident trying to get to a restroom when I am driving , the intensity can get crazy, so its better to let go knowing its ok I have depends and maybe its only a feeling and not much happening.

God Bless us all for we are here to learn and a special thanks to the prostate cancer survivors here at HealthUnlocked that have made me a fast learner by sharing their experiences as I will to all the new diagnoses that are looking for answers that I have experienced.

Robert