My story

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Hello All,
I've been reading and learning here for the last 5 months or so. So, I think it's time to introduce myself and tell my story up till now. I'm a 66yo formally very active guy(Not any more). Last September (2022) my urologist noticed my PSA numbers were climbing. So, first the Digital exam. She said she felt a rough spot on my prostate and that it was probably the first signs of cancer. This was followed up with a CT Scan (nothing found) and then a Prostate Biopsy(not a fun test by the way)But that came back as having 2 samples show positive. Then the discussion about possible treatments.
Everyone must pick what they think is right for themselves. I chose the Radicle Proctectomy(RP). Everyone that has gone thru this procedure is painfully aware. Promises made, Surgery, Catheter, incontinence, Pain, Healing, Etc.
So, after 5 months of dealing with all of this, my doctors telling me that I'm healing and doing great, keep doing the Kegels.
I finally go for my 5 month check up, where I complain about the continued complete incontinence, depression, and so forth, only to be told that "yea, that happens sometimes". What? I thought that total incontinence hardly ever happens. "Yes, that's true but, it has happened to you" So now what? I ask. Well, you go home and learn to live with it or we can recommend a Urinary Reconstructionist for you to talk about installing an Artificial Urinary Sphincter.
Appointment is next month. Do I want an AUS? More surgery, more pain, more healing, will it work?

I'm starting to think that I should have just let the cancer take me. At least I would have had a couple more good years. Now I'm just miserable and depressed. I can work at a snails pace and have to take plenty of breaks to change pads. No more shooting, teaching, and coaching at shooting competitions. And, I think my wife, kids, and friends are starting to avoid me. They just feel sorry and don't want to talk about it. Maybe I remind them of their possible futures.

Thanks for reading, if you made it this far, and I'll try to get back to you all and let you all know how this all works out.

Jim

 

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I know it’s tough to imagine, but, I think 5 months is way too early to conclude that your progress has plateaued, and that things will never get better. You didn’t say, are you receiving help from a Physical Therapist who specializes in RP patients? If not, I'd look into that. Also, we all recover from our RP's at different rates. I was kind of a slow healer. You may be as well. Hang in there! Sending prayers.

 

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Jim
I had an RP seven weeks ago and I am thinking just like you are at such an early stage of my recovery or lack of it. I’m not sure if I’m ever going to regain my bladder control and at this stage very much doubt it. It’s so frustrating and wonder if it’s all worth it. What keeps me going is my two year old grandson who I adore and hope to see him play baseball and graduate high school. I’m 70 so I’m being overly optimistic but it keeps me going. Don’t write off the surgery a bit more pain may bring you back to a fairly normal life. Keep me updated but think about those who love you and need you around in there lives to make more memories.

 

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@Jim1256 I can empathize with you also. I am only three months post RALP and find myself questioning my decision to yank the damn thing out too. BUT at least 4 guys I know who went the radiation route have had a recurrence of the cancer. I might have a recurrence someday too, but I like my odds better than theirs. AND though my incontinence is so, so frustrating; I agree with Chuck11 that many guys here finally overcame it even if it took a year or so. I am willing to bring extra pads with me to golf and change them out in the middle of a round. I am less likely to go on day long excursions, but more likely to get things done around here. In other words, we have to make lemonade out of our lemons. You can do it.

 

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@Jim1256 I understand and feel for you. I never thought that the incontinence would be so bad which brought me depression and anger.

At the end of this is my month by month journey.

Kegels, Pelvic Floor Physical Therapy, and some psychotherapy helped immensely.

I have to say that being able to speak with men who have been through the same circumstance helps (not just prostatectomy but also leaked a lot pass the 6 and 9 month marks). Ask your Urologist / surgeon to refer you to a psychotherapist that specializes in men recovering from prostatectomy - I suggest doing this as patient portal medical question message so that it is documented. You may use the internet to find someone near you, but document the asking with the doctor's office that suggested at 5 months that you live with it.

I also started taking Solifenacin at month 5 which helped reduce my leakage from 30 ounces down to 20 ounces a day.

After 10 months, I was tested to see if I could do the sling or AUS, but I had to wait a full 12 months before the procedure. it also may take 2 months to be scheduled.

Hopefully your incontinence will get better - More so may your depression improve and you are able to handle the incontinence better.

Writing and updating notes for each doctor's visit helped me. I gave a copy to my primary care and urologist. Writing helped me to identify how I was feeling and what I wanted (more than to be dry - to be heard). Writing also gave me an outlet to feel depressed and angry so that I reduced the amount that I shared with my friends and family.

Everyone's journey is quite different,
Terry



My journey - notes that I made for my doctor visits. I weighed my pads and pullups, kept a spreadsheet, and converted averages to ounces. I used a digital kitchen scale measuring in grams - 1 gram equals 1 milliliter (close enough for comparisons).

Incontinence as I see it.
Type of leakage - standing - constant (overt) dripping every 2 to 10 seconds - bladder neck / external sphincter not closing.
While I am able to keep from squirting as I am standing up, the urine dribbles or slow flow out within a few seconds. I am able to hold some urine in until I make to the bathroom.
I am able to push urine out (increase the flow rate) in the bathroom ( which I could not do or feel at 4 months).

My progression (leakage in ounces)
2 months - 60 oz; nighttime 2 pullups (strong stream shoots out Depend pullup using Northshore Go Supreme pullups)

3 months - 40 oz; nighttime 1 pullup (6 to 17 ounces)

4 months - 30 oz; Pelvic Floor Physical Therapy; nighttime from 4.3 down to 2.3 oz

5 months - 30 oz; stopped muscle relaxer; nighttime from 2.3 down to 1.4 oz

6 - 7 months - 20 oz; started Solifenacin for OAB; decrease due to Solifenacin.

8 - 9 months - 17 oz; Myrbetriq and Gemtessa - did NOT provide much improvement and are not covered by my insurance

10 months - 17 oz; Urodynamics and cystoscopy - schedule male urethral sling surgery - 17 oz

12 months - Male Urethral Sling Surgery - (Sept 2022 one year - I recommend the sling surgery)

13-16 months - self-catheterizations (1 weeks 4 times day; then twice a day; daily; then weekly; then stopped)

17 months to now (24 months) - I leak about a quarter of ounce at night. If I take migraine or headache medicine, I will leak more. I went down to just a pad in my underwear until April 29, 2022 when I released out of the pad and had to change my sheets in the middle of the night. I will always have the above sheet bed pad and wear depend pullup, pad, and underwear.

 

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Jim, we who have had a RP can all relate to your frustration. I had my surgery in March 2022 followed by 40 radiation treatments which ended in October 2022. I did not experience any improvement in my incontinence until right about 5 months post-op. I am now down to using about 3 to 4 pads per day which is not great, but far better than total incontinence. You might try a condom catheter, they are a good alternative to pads.

I agree with Chuck11, 5 months is too early to determine you won't get better.

Best wishes.

 

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I’m 64 yrs old and had my RP 2 1/2 years ago. Agree that doctors aren’t always transparent with patients regarding after affects of RP. I use 1 regular pad a day when I golf or ride motorcycles. Otherwise I use a light shield most of the time. I’ve resigned myself to the reality of always dribbling a bit and also to the dreaded ED. It’s a pain, but I’m alive and able to complain about the surgery side effects and more importantly, able to spend time with my wife, kids and granddaughter. Dig deep and hang in there. Getting old is not easy!

 

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Jim, hang in there and check progress after one year. I was in a similar situation and after three years (2-3 pads a day) I had the Boston Scientific Advanced sling installed. I am now dry except for a few dribbles when I exercise hard. The sling surgery greatly improved my quality of life. There are options to improve your quality of life. I had RP at 64. Initially I was bummed with my slow crappy recovery. However, I now focus on my zero cancer markers, enjoy a reasonable erection once a week, and celebrate my new driness. Stay active and positive. Growing old is not for the faint of heart.

 

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Hi Jim,
I had an RP 11 weeks ago (76 yrs) and am still very incontinent during the day. Interestingly, It's not too bad at night and gradually gets worse as the day progresses. I've had 10 pad days but generally soak through about 5/day. Been doing Kegels and a fair amount of walking. Hope it gets better. It's very frustrating but beats the alternative. My Dad died of metastatic prostate cancer and it's not a good way to go. Looking around the internet, there is an amazing array of incontinence products out there so clearly a lot of people have the problem whether from prostate issues or something else. What appears to work best for me right now are Depends pull ups with an additional pad. I'm partial to Always extra long (female) pads as they appear to absorb more than the male pads and are thinner. I don't remove the adhesive strip cover so it makes them easy to slide in and out the pull up. They also come with an integrated plastic disposal sheath and strip. Just roll them up and toss them. May try a clamp if things don't improve. Hang in there.

 

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So sorry to hear about your problems. I was incontinent for about 6 months so decided to get AUS
surgery in February and I have been completely dry! What a relief to lead a normal life again!

 

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Hang in there Jim, 5 months is way too early to expect progress. Everyone heals differently. I’m in the same boat as you, but it’s been a little over 2 years for me and still leaking, sometimes 4 pads per day sometimes up to 8. I still work at 67 will be 68 in a few days. I learned how to cope with it, including the embarrassments. But I’m alive and enjoying life. Been on a couple Cruises and vacation in Jamaica, even did the longest zip line in the world. My wife won let me jump out of a perfectly good airplane. My biggest fears was running out of pads and pull-ups while on vacation. I did on the cruise but thankfully they had baby diapers on the ship, so I dealt with it. A month ago I had the AUS Surgery, it will be activated in 16 days. Can’t wait. My friend there’s many things out there that can help, but wait a little longer, but in the meantime enjoy your time on earth, there’s so much to see and do on this side of the grass. And as you can see your not alone. There’s a whole army of us here to support you. Blessings!!

 

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I had RPS over 7 months ago. Have had leaking day and night since with very gradual improvement with the help of a physical therapist who specializes in incontinence. Right now, I use one or two pads a day, one pull up at night, about half what it was at the start. I’m a cyclist and can ride my bike without issue. There is some leaking but less than other activities. I has a reality check when our son’s father-in-law was diagnosed with stage 4 PC a few years ago. He’s done quite well with hormone therapy, though that diminishes in effectiveness over time. I had been tracking my prostate health for a decade after a positive biopsy finding but pulled the trigger on surgery when a higher grade legion appeared.

I knew about the possibility of incontinence and ED, but surgery was the only logical move at that point. The range of these side effects is wide, so it’s best to not have expectations. Improvement can come even a year out or more from surgery. I’m 74, but in pretty good health. My overriding desire is to be around to watch our grandson grow and to live life. I can adjust to incontinence with a little planning.

I will say that you should have a PT who includes biofeedback in the regimen. It tells you if the kegels are being done correctly and can measure the strength of your squeezes. A good PT can help a lot.
Good luck, keep working.

 

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I'll be 79 in July. Had a non-nerve sparing RARP (Robot Assisted Radical Prostatectomy), with nodes on 5/27/21, did 12 months with a pelvic floor PT with biofeedback, did the AUS on 8/26/22.
Some thoughts:
1. Check out the Facebook AUS group page to learn more about the AUS at https://www.facebook.com/groups/ams800.
2. Talk to a Boston Scientific rep to find out which surgeon does the most AUS surgeries in your area. Highly recommend Dr. Wolter at Mayo Phoenix
2. Give yourself more time and stay positive for your family's sake. Talking to us will help that. It's also OK to get a psychotherapist involved who deals with depression.
3. Get a second (or even a third) opinion

 

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Man! Lighten up. I'm 18months post op. Do I still leak YES! does my penis get hard like it used to ? NO! But I'm alive I'm healthy and actually pretty damn happy. My wife and I keep exploring different options, some work others don't. But still happy to be cancer free!!

 

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I am 7 months post op. I had very little improvement until month 5 and have been improving steadily since then. I have found it a slow process and for the first 5 months I was feeling very negative and depressed about my situation. I would say just hang in there. Prepare yourself for a long haul. If things don't improve physically for you over that long haul then I am sure you will learn to cope better and gain greater mental strength. I personally would disregard what the professionals are saying to you at this time unless they have good reasons to back up their lack of optimision. Consider getting a second opinion and certainly look to having psycological assistance. Considerand perhaps try a penile clamp and external catheter. Good luck and keep in touch.

 

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80per cent continent by 6 months or up to a year, 15 per cent very manageable with pads and the remaining 5 per cent considering additional surgery. These are often the quoted statistics and if you're like one guy I know who was dry at about 3 months your not likely to be on this forum. Like most of us here we are on the wrong side of the statistics. There is no point living with regret and wishing you'd chosen the radiation/ hormone route. There are good stories there too but sometimes major challenges. As others have said try to be patient, there could be improvement even up to two years. In the meantime for longer days away think about an external catheter. I am just back from a long weekend away with my family and the conveen was very useful. Feeling down or depressed is understandable. I was very down a few weeks ago and I am now going to counselling for 6 weeks. I also have SSRIs from my doctor although I haven't started taking them yet. I have seen a lot of improvement but by no means perfect. I am one year out from RP and am giving it another 6 months when I will then consider sling or AUS. You must try not to allow incontinence to define who you are as a person or to curtail what you want to do in life. Not easy I admit but it is the only option if we are to live a purposeful life. I hope that by sharing your story and reading the journey that others have taken you find comfort, strength and determination to carry on living as full a life as possible. Best wishes to you and your family

 

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Im 20 mo post RP and 2 weeks since I had sling surgery and been dry ever since. Five months is way to early to worry about not gaining continent back. The stats I heard that after 9 months, 60% regain continence with no problems, 30% have some issues/surgery needs, and remaining have continued incontinent most like due to other health issues (weight,diabetic). Keep doing the kegels as everyone progresses differently on building up the pelvic muscles. I'm cancer free and praying this continues.

 

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Skytown. Can I ask how much you were leaking before deciding on the sling?

 

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I finally go for my 5 month check up, where I complain about the continued complete incontinence, depression, and so forth, only to be told that "yea, that happens sometimes". What? I thought that total incontinence hardly ever happens. "Yes, that's true but, it has happened to you" So now what? I ask. Well, you go home and learn to live with it or we can recommend a Urinary Reconstructionist for you to talk about installing an Artificial Urinary Sphincter.
Appointment is next month. Do I want an AUS? More surgery, more pain, more healing, will it work?

I'm starting to think that I should have just let the cancer take me. At least I would have had a couple more good years. Now I'm just miserable and depressed. I can work at a snails pace and have to take plenty of breaks to change pads. No more shooting, teaching, and coaching at shooting competitions. And, I think my wife, kids, and friends are starting to avoid me. They just feel sorry and don't want to talk about it. Maybe I remind them of their possible futures.

Thanks for reading, if you made it this far, and I'll try to get back to you all and let you all know how this all works out.

Jim

Dear Jim,

so sorry to her all the struggles you have! Fortunately many already tried to point out that it's too early to expect perfect results concerning your continence and that you need to be more patient about it.

I'm coming from a different point of view, being urinary incontinent for different reasons, 62 yrs. old male, never had to do something with prostate issues and surgery in that section.

I see in you writing that it is hard for you to accept that total incontinence might be a result, that you rather let have the cancer taken you instead, that you can't do you loved activities because of trouble with your pads, that you even have the feeling that wife, family and friends are starting to avoid you and so on.
In my eyes all this is the much, much worse outcome than your - for sure not light weighted! - physical issues. In my opinion those physical issues need some much more time for healing, probably further things have to happen to improve your continence.

But first, please, please work on the other issues you have! I myself and for sure more others here in the forum can ensure you that even with a total urinary incontinence life can be brillant and very fulfilling. I can do - with wearing according protection - all my beloved activities nearly without limitations, nobody else can guess my kind of underwear with wearing appropriate clothing, all my active and also social life continued with my IC in the same way as before. My wife's fully accepting and supporting my condition, only those who need to know I told, all other don't have an idea about my condition. I don't feel any shame or embarrassment with wearing diapers, they are simply for me a perfect tool for my medical condition that help me to live my active and normal life in the same way than without being IC.

Don't misunderstand me, I don't want to push you in any direction, I understand everyone fully who wants to try really everything and fights to get back full continence. But for me it was a decision about how I reach open minded the best quality of life, and for me this was simply wearing protection without any side effects instead of taking meds with not so nice side effects and only decreasing my IC for a certain grade or, even worse, surgery (artificial sphincter)with no guarantee of 100% continence...

Keep your head up, try also to think about this, as soon as you get out of the mood that there is no solution any more you will automatically again get also more attractive to your family, friends and others. Discuss with your wife all your thoughts and feelings, I made the experience that - being married since 37 years - our open, deep talk with my beginning IC, my feelings about it, what could be done, how we handle this condition together, my and her feelings with me starting to wear first pull-up pants, later diapers, all this bonded us stronger together than we have been before...

Feel free to ask anything you want to know, if it makes you happier you may even beat me (literally) for what I wrote!

 

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I was leaking 2-3 pads per day and it was three years since my RP.