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Hello everyone. After 6 years of watching an increase in my PSA it spiked in January with follow up MRI and biopsy diagnosis of Gleason 6 prostate cancer. My urologist offered continued follow up with biopsy and PSA or surgery. However, I just can’t watch a cancer in my body and the past 6 years always caused anxiety when I had to have my blood work so I have elected to have the surgery.

I know that leakage is to be expected and I have logged on here to get some insight and advice. Should I see a therapist before hand? What does therapy entail? How do I keep myself from smelling bad?

Thanks

 

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You will experience incontinence and need to do daily pelvic floor exercises and wear leak absorbent underwear and pads
I’m a year in from my surgery and even though not leak proof yet I preferred the surgery over radiation
It’s an inconvenient pain leaking but that was the route I preferred to take and hopefully it will eventually level out

 

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@VAC55 I would wait a few months after surgery to see a Pelvic floor physical therapist. They will help a lot once you are ready to start healing. Meanwhile start Kegel exercises now. Be patient with your recovery and stay positive. Good luck!

 

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If i could undo the surgery I would. With all the advances in medicine, its a shame what men have to go through after having the prostatectomy removed. Prostate cancer surgery isn't something anyone should elect to do. YOU need to do more research if you are mostly worried about smelling bad. While I'm still incontinent a year after surgery, I'm sure i never smelled like urine.

 

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Hello and welcome! I was (3+4) 7 Gleason scale, 63, healthy and active. My only symptoms were elevated PSA (10). I had my Radical Prostatectomy open surgery on Feb 12 - robotic was only offered in one other hospital with a long wait time. I'm told the surgery was successful, but don't have blood work until May 12. I had the catheter removed two weeks after. My story with continence is that 10 weeks post surgery, I am 100% incontinent. I wear a diaper 24/7, unless I'm on the toilet or in the shower. I can close the external sphincter when I do a kegel, but otherwise a constant drip and gushes when I stand, cough, sneeze or water running. My surgeon says that the internal sphincter at the bladder was removed with the prostate.I go through about 10 diapers a day and some leak. I'm frustrated and somewhat depressed because I didn't have symptoms before and now this has put a tremendous burden in my life. My hope is that I am free of Cancer. I know that this takes time. I know that many others have better stories. I know that it could be worse, a friends brother died from an infection as a result of the surgery.
I think if you can see a therapist before surgery, that would be helpful. I wasn't told about therapists and found out after with my own research and don't have an appointment until next week. I had a zoom group meeting yesterday with another physiotherapist and she was saying things that aren't true according to my experience, what the surgeon tells me and what Google tells me.
I don't think I have a problem with smell, except for the garbage that gets picked up every other week.
Sorry about the rant, but that's my experience. Best wishes with your experience and hopefully better than mine.

 

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Indeed, the leakage gradually disappears with appropriate exercises (at leasst in my case). I am now 14 months post op with a radical prostatectomy and am almost 100% out of the incontinence (the first three months were difficult, with pads and a high level of worry, but did take a trip to South America, India and Mexico 5-9 months post op, without pads and no difficulties). I know some people have been continuing to have incontinence problems on this forum and it may depend on your own prior health and the quality of the surgery, I suppose. I would certainly recommend talking to your urologist/surgeon and learn about the exercises prior to operation (Something I did not do and gave me a lot of worries post op)

 

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With a Gleason of 6, I think that most surgeons would recommend "watchful surveillance"
a Gleason 7 would be another story. Personally, I wouldn't jump into surgery at this point. The ramifications of surgery are underplayed. Incontinence, ED, and penial shrinkage are passed over quickly by most surgeons if addressed at all. I don't know if the percentage of these occurrences are as advertised but it seems unlikely from those on this forum.
I'd have MRI and PSA tests at least once a year to monitor any change and enjoy the life you currently have. It will change dramatically after surgery.

 

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VAC55

I had radical prostatectomy done at the beginning of this year. Before the surgery friend of mine told me not to have it done unless it is a robotic DaVinci surgery which is not available where we live so the only option was to travel someplace else and cover the cost . He had RP done 2 years ago the old fashon way and regretted it ever since due to urinary incontinence and ED which is very present still. Like him I chose to have surgery done locally the old fashon way since traveling out of the country without health insurance was way too scary. Well just like my friend I have a severe urinary incontinence and I mean out of control ... the moment I make a small move or stand up everything goes into a diper. I am at 30-40 dipers a day and don't see any improvement so far. Physiotherapy so far is not helping much and the cost is prohibitive. Urologist /surgeon doesn't seem to care, and is very dismissive.. I don't know if robotic surgery would have a better outcome but from my DD on the internet and talking to people who had it done I conclude that DaVinci in the hand of a skilled surgeon have a very good success rate and only a small number of patients will experience long term side effects. I gather the key words are Skilled Surgon . Needless to say Iooking back I kick myself for not taking a chance and getting DaVinci surgery. No guarantees but on average collateral damage is probably to some degree limited. Good luck.


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@Josh Sorry you have had such a tough go of it. Have you considered External Catheters? They take time to get use to, but are very effective. They keep you dry and is just one condom per day. Feel free to ask any questions about them.

 

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I think age and surgical skills greatly influence continence post RP. I’m 6 years out post RP, had Gleason 7, otherwise very healthy and active with <0.01 at 76 years.Still leak 2-3/day. Think guys should state their stats so as to help us start to see where our differences are as well as similarities. Wish I had been given more info from urologists including a consult prior. My surgeon asked me to read a book he ‘loaned’ me. It told of a 38 year old RP victim and revealed little of what I’ve learned post RP, and the 32 years of difference was inappropriate for my comparison. If one can avoid RP and watchfully monitor PSA, etc., it’s worth it. Also I still do Kegels which have been relatively ineffective. Given the pervasiveness of prostate cancer, is it just me, or is not enough being none to seek alternative surgical precision to protect internal sphincter? I’m sure there’s lots of money made from each RP, so maybe researchers and surgeons prefer not to pursue alternatives.

 

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Klew11 yes I use it during my walks outside. At home however I use dipers for some reason I have a fear that my bladder will get lazy if I will use catherer too often. By the way I modified my catherer so I am using plain condoms which is much cheaper. I make a little hole at the tip of a condom fish the catherer 'tube tru that opening and place 2 small rubber rings to hold the condom in place connected to the tube. Works like magic.

 

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Hi - I’m 68, Gleason 4+3, PSA 7.9, and had a robotic nerve sparing prostatectomy 2 months ago. The catheter came out after 14 days. The incontinence was quite bad, depressing, for a week but with my regular pelvic floor exercises this improved quite quickly. I’m dry at night and during the day if I’m not doing very much. Walking, golfing, gardening and cycling I still get a bit of leakage.
My prostate was enlarged and that has slowed down my recovery. My surgeon is confident that I should be relatively dry within the next couple of months.

 

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@Josh Glad you have found some solutions that work for you. I hear what you’re saying about bladder getting lazy. I try to be conscious of not letting that happen.

 

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I'm 66 was super healthy long distance runner until PSA went wild from 6 to 14 in 9 months and Gleason cloaked at 9. Now I feel 99 yoa in my spare time I am forced to look for dipers on sale oh would be funny if it wasn't so sad.

 

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I had my RP in December 2023.I am 65 years old and my Gleason was at 7(3+4) after monitoring for 3 years. The first month the incontinence was bad and very depressing since I am an outdoor person with golf been one of my main activities. The surgeon assured me things would get better. I was lucky to have an experienced surgeon and the surgery was robotic.Things have got better since the first month and I am down to one pad a day and a safety diaper at night although there is no leakage.

Physical therapy with Kegels and Yoga have been a great help and would recommend that to anyone.My PSA was at 24 at time of surgery and is now undetectable.

 

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There are many factors that come into play with a successful RP , the patient's age,physical condition, surgeon's skill,the hospital's equipment, location of the tumor and luck are some of them.
It's hard to get them all working in our favor.
I had the head of robotic surgery at a major NY Hospital who has done over two thousand RPs as my doc
I'm in great condition with no underlying issues but I was 80 and the tumor was a bad spot.
The surgeon's primary job is to keep us alive by getting all the cancer. He did that with flying colors and I'm eternally grateful. But I leaked "like a sieve" and saw no improvement after 6mo.
I didn't wait years to have an AUS. I didn't know how many good years I had left and I didn't want to waste some or all of them waiting for something that might not happen.
I skied 30 days this winter in Utah and have a scuba trip scheduled in June.

 

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I will be 69 next month, had prostate removed after being watched for about 5 years. My problem is this, If there’s cancer and it keeps growing after every PSA reading, why do we have to wait until it gets so high? Wouldn’t it be better to remove it when 5, 6 or 7 years younger? I asked my regular doctor this after my surgery and he said that’s what urologist do. I’m no doctor but I think it’s BULL. If I knew what I know now, as soon as he said cancer, I would’ve told him to get it out.
Anyway now that I vented I can tell you after doing kegels for 2 years and leaked for 2 years I opted to get the AUS surgery. To keep a long story short, I just want to say I’m a very happy man.
Good luck to you.

 

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Hello, I am 60 and was 57 when I had surgery in December 2020. Gleason score was 7. Davinci surgery at a well known hospital with a surgeon that had performed over 10,000 prostatectomy. This surgeon had co -authored at least one textbook on prostate cancer surgical treatment. I Still deal with occasional stress incontinence and severe ED. Also occasionally wet myself at not if I drink a little too much water after dinner or if I sleep too soundly.

I just think for whatever reason things just happen sometimes because healing may take an unexpected turn.

 

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@VAC55. I hade Radical Prostatectomy sept 22. My incontinence was bad but not total. It improved vastly within 6 months and has been improving slowly ever since. I leak a bit still but believe it is still improving. Every man is different. Some do not suffer at all. Some suffer just for a while after the catheter is removed. Others have a long journey and unfortunately do not really recover. The latter are in the minority though. Remember, you will read about the worst occurances on this forum. That is primarily because those who are not affected would not be visiting this site. I would say make sure you try to accept there may be side effects but that your goal is a long and healthy life post op. Ask your surgeon if the op will be nerve sparing. Hopefully it will be but if like me it is not then so be it. Do kegals in accordance with your specialist's instructions from now on and possibly for ever more. As far as the op is concerned. I was petrified but it was nowhere as near as bad as my brain told me it would be. I would do it again. As far as smells are concrned, nobody said anything to me and I am sure my wife and children in particuar would have done. Good luck on your journey.

 

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Gosh I am overwhelmed! I can’t believe all the posts I received here! I thank all of you. I will take all of your advice and I am grateful for that. I expect bumps along the way and ask you to indulge me should I wish to rant. I see the physio therapist in few weeks well before surgery. If I get any tips I will pass it along. Thanks again.