Radical Prostatectomy

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Hi all,

I am a 54 year old male and due to my PSA test (thankful that my company has such great benefits and on onsite clinic/doctors/labs that provide regular well checkups and screenings) and subsequent biopsies/MRI, I found out I had prostate cancer. If not for the test, I would never have known - until my surgery, I had absolutely no symptoms...no urinary issues, no sexual issues.

At first, I was told that I had a slow-growing non-aggressive cancer and for a year, we did Active Surveillance. Next step was an MRI, followed by another more in depth biopsy...found out that the cancer was worse than at first and it was time to act. I talked to urologists: first, a radiologist...then a surgeon. I decided on surgery as it was explained to me that if I did the surgery, it could be robotic and if necessary, I could go back w/ radiation afterwards, but not the other way around. Robotic surgery was not possible after radiation and I would need to see a specialist in another city if I needed a prostatectomy after radiation, so I elected the surgery.

I was told about the possibility of sexual/erectile disfunction and possible incontinence, but NOT the EXTENT of it. PLUS, now I am being told that after the biopsy of the prostate, lymph nodes and seminal vesticals, my cancer was considered stage 3 and MOST stage 3 patients have to follow up surgery with radiation.

I was not prepared for any of this. Incontinence is BAD and pretty extreme right now. I have no sexual functions and I am very worried about additional radiation procedures. I am good battling pain, being tough, etc...but I can't do anything about all of this, feel helpless and honestly, depressed.

I am not even 2 weeks removed from surgery and so I realize I have to give my body time to heal. I am doing the Kegels exercises (started at doctors suggestion even pre-op) and I am trying to realize it just takes some time, but it is HARD - not physically, but mentally and spiritually!

So, that is my story. I am a Catholic Christian, so I have my faith, which is HUGE, but just very frustrated and depressed right now.

 

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So sorry this has happened to you. Understand why you are discouraged & depressed. It's okay to vent here. You'll read about a number of men who have had issues with their prostate & prostate cancer. Recommend that you hook up with a psychologist or a Licensed Clinical Social Worker (LCSW) who practices Cognitive Behavioral Therapy (CBT). I'm seeing a LCSW & doing CBT with him right now. It's amazing -- the difference between a therapist who does not use CBT & one who does. I'm discussing my upset at having Overactive Bladder & Fecal Incontinence. Wish you well!

 

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I am 67 years old, and still recovering from robotic prostate removal in November of 2021. I am now almost 11 months post surgery. My story parallels yours very closely with surveillance for 2 years and then removal when the cancer was determined to be advancing. However I did not have stage 3 cancer and have not needed followup radiology. My PSA tests every 3 months to this post have all been negative for cancer. Like you I was bewildered, depressed and angry initially with the incontinence and sexual disfunction. It was more difficult than I anticipated and harder to deal with than I thought it would be. To this date I am not entirely continent but have it somewhat under control. No problems at all with sleeping or sitting. Unless I engage in considerable activity, or have coughing and sneezing attacks, my leakage is minimal. It has been a slow process, but it has improved considerably from the first few months. Intimacy is still a struggle. I have an understanding wife of 42 years who enjoys and appreciates what I can offer. That is still a considerable work in progress. All of us heal and improve at our own pace, but the bottom line is we DO heal, and over time, and with much patience and work, what you are experiencing now will improve, and hopefully considerably improve. I don't know what radiology will do for you and if that will magnify or extend your recovery, but I would anticipate continued patience and work will start to give you improvement and relief. I may have some issues the rest of my life, but it is all manageable for the most part now. Have faith and fortitude, keep doing what your are instructed to do. It isn't hopeless.

 

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Hi iuwogeo:

First off, don't get discouraged. Recovery takes time. I was the same as you, no issues at all. Decided to do surgery then wait and watch and was glad I did as the cancer was worse then the biopsy. Did radiation because after surgery, my PSA did not go to zero. Now 2.5 years after radiation, I am still clear.

Now, my incontinence gradually improved over time and I was pretty much dry by 9 months. I weighed my pads and keep a log. While I couldn't feel the improvement but the scale did. Gives you the knowledge that you are imporing.

ED was an issue at first but that too got better. I do not feel exactly as before the surgery, I can perform without any aids about 1 year after the surgery.

I thought the radiation was a cakewalk. Never had any issues with it. Only side effect is I lost my hair down there but that has come back as well.

Time will be your friend. Keep doing the kegals and follow your doctor's directions and you should land on your feet in the end.

I was 62 at the time of surgery. That was almost 5 years ago.

 

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I was 54 when I had my surgery one year ago Oct 6. No symptoms and 25/25 on the sex quiz. Like you I was not prepared for the issues you describe. Wore several depends a day/night until 3 months, then a couple heavy pads until about 6 months. Now a “drips & dribbles” pad during the day for when I cough or sneeze, all good at night.

Sexual disfunction sucks. Get the pump after a few months, take a daily erection pill, make sure the wife has plenty of batteries lol. Very slow improvement, still a long way to go. Doc says I’m doing very well in that regard because the pump and ring works ok, but it sure isn’t the same. Doc spared the nerves on one side as cancer was confined to the left side.

Your issues are normal but no fun. The first 3 months were the worst for me, I was depressed sometimes as well. Doc did not adequately explain what was coming, maybe because I’d say hell no. Good luck to you.

 

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You’re not alone here. Most men on site have had RRP with similar stories. Particularly the extent of adverse effects. Mine was 4+ years ago at age 70. I too was previously told not to worry-watchful waiting. Well not seeing a urologist in a year, and after moving 4,000 miles to retirement in desert went to urologist who suggested biopsies (12 plugs). Next thing I knew is I have dangerously high levels of cancerous lesions. Same story of RRP vs Radiation. Of course decided on radical, but never warned of severity of after effects. Been fighting incontinence and ED ever since. Takes patience and supportive mate. Things get better over couple of years, and some (minority here) actually regain dryness - From what I’ve garnered it’s a minority, but it’s better than the alternative. Stay as active as possible including any pelvic floor exercises you can pursue. Check this forum’s offerings. In other words it’s not just Kegels. But I’ve found walking/kegeling, vinyasa yoga, weights, and any pelvic floor stuff all helpful. Your very young so I believe you’ve got that on your side. Particularly for ED. There are multiple options again on this forum advising about ED options. It’s great that you found the forum early. Took me about 2 years to find it and discovered the fellowship here. Infrequently, but it happens, a wife or mate of the victim will give a different perspective-very helpful. Talk about it with those close and trusting. It’s a struggle but always hope for <.01 PSA at each blood test. That’s the secret to conquering this affliction. Make sure your urologist is responsive or find another. Lots of guys here swear by their PT, but I can’t say it was helpful to me. Keep on keeping on!

 

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Not sure where to begin here.....firstly, when you say "it is HARD - not physically, but mentally and spiritually!" and " just very frustrated and depressed right now.".....you absolutely are not alone. Join the club!!!! EVERYTHING you mention in your message is shared by almost everyone in this forum!!!

Secondly, when you state "I was told about the possibility of sexual/erectile disfunction and possible incontinence, but NOT the EXTENT of it.", your surgeon was absolutely not being straight with you....nor was mine for that matter! That's like the Captain of the Titanic telling the passengers there might be a small leak after hitting the iceberg. LISTEN TO ME.....I'm going to be very direct, you are going to leak, dribble, pour like a sieve for quite a while. As they say, everyone here has their own story.....but, I can assure you that severe incontinence is the norm.....and will be for many, many weeks/months. Accept it, adjust, and move forward.

Get your PSA checked in 10-12 weeks.....if you need hormone or radiation treatments, get them! You sound like you're tough enough to get through this. The success rate of surviving this ordeal is certainly in your favor.

 

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I'm 78, had my radical in May of 2021, and currently am 4 weeks out after AUS surgery which I hope (90% odds) will fix the incontinence once and for all. I did all the Kegels, PT, etc faithfully but still had incontinence issues that compromised my quality of life. Point is keep the faith, be patient, and know there are possibilities on the other side if it doesn't work out to your satisfaction

 

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I’m 67 and I had my surgery 17 months ago. Had another PSA test 4 months ago, still no cancer so next test at 6 month interval. Yes my urologist was like yours, not quite upfront with what to expect. I’m still leaking, sometimes light, sometimes heavy. Can’t get an erection for having sex. Thank God for a very supportive wife, even though I get disappointed and down at times she’s always there to pick me up.
Listen my brother, give yourself time, think positive and know there are many of us with similar issues and many more that are worse than we are. I have tears in my eyes as I write this post because my wife is standing right next to me, supporting me. We’re all here to support each other and as you read other posts you’ll realize that you’re much luckier than many others. My God’s healing hands continues to touch you. Love you my brother!

 

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Everyone heals and progresses at a different pace depending on all the unique circumstances you mentioned. However, for pretty much everyone who has had RP, you shouldn't expect a lot of progress the first couple of months. It's a major surgery and your body needs time to heal. There are many posts in this forum about healing and experiences that should be helpful. Its frustrating, but stay positive and give your body time (at least 8-10 weeks and then it's progress not perfection) to heal before worrying about your long term outcome.

 

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At age 63 Feb 2020 for my prostate surgery. Saved one nerve of the two.
Incontinence is manageable- cough sneezing or getting a hug from behind makes me leak a little.I’m ok with that.
Read and was told after 18 months you have you have with erections. So I had no erections after 18 months . Was resigned to life with out conventional sex ( had to improvise with my understanding and loving wife).
Well it was March 2022 and in the middle of the night I woke up with an erection WOW. It’s getting better every day and I’m getting turned down for sex lol .
What the urologist failed to tell me is that you loose volume and length.It was a little shocking but better then nothing.
So never give up , we all heal differently.

 

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I love that WOW! Moment for you. Can’t wait to have mine.

 

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@iuwogeo sorry to hear about your experiences. Your feelings are normal and valid. Peer support on this forum is wonderful, but don’t be afraid to seek help from a therapist if you get can’t get out of the funk you’re in. Surgery, cancer and incontinence are all very traumatic experiences! Look after you.

 

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WOW - 13 responses overnight! Y'all are the best...
I appreciate each and every one of your prospectives - it means so much that so many would take the time!

I will be fine, but it is hard. I am not used to being frustrated and depressed - it's normally not like me and I am a grinder - I will do what it takes! It's just that I didn't know what this was going to be like so was not mentally prepared...

All of you are helping so much with that and I am ready for the fight and will be patient and seek any help that I need.

Day by day...may +God+bless+ each and every one of you and thank you SO much for sharing and caring - not always easy to do!

Love y'all!

 

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@iuwogeo Based upon your final statement, I would like to chat with you in the private message area

 

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@iuwogeo I found in life, after 24 surgeries, that doctors never tell you the truth about how bad it will be afterwards - if they did, nobody would ever get surgery! It’s best to consult forums like this in advance to find out from others who have already had the surgery, what it is really like. I need knee replacements but after reading a forum about them, I’m much more hesitant.

Guys, I don’t understand how you still have a sex drive when your prostate is totally removed? Is it because you still make testosterone? When a woman has a hysterectomy, she quits making estrogen and vamoose! no more sex drive.

 

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Same experience here but I'm just 9 days out from catheter removal. I get PT starting soon to help with incontinence, but it's stressful not knowing how long this takes to resolve. I did active surveillance for 10 years(I'm 73)at Univ. of Michigan until latest biopsy showed a more concerning lesion. So got the robotic surgery, pathology showed nothing near the margins and clear lymph nodes. So the incontinence is a good trade off, I guess.

 

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cyclist (et al) - one thing that seems to have helped me a LOT is watching what I eat and especially what I drink!

My surgeon said no dietary restrictions, so I was eating and drinking everything after my surgery, but then I went to websites that said what you eat and drink matter a LOT, especially while your bladder is healing...

The article said no caffeine/coffee, soda, fruit, some vegetables, like tomatoes...nothing spicy, no alcohol! I think I had ALL that after my surgery!! Not good - had uncontrollable incontinence for first week.

Since, I now ONLY drink water, watch what I eat and there has been an extreme improvement! I still go through a few pads a day, but usually wear the same padded garment/underwear all day/night. At first, couldn't make it through the night...after, haven't had more than just a little leakage - barely enough to tell (of course, I am back to getting up to go to the bathroom once or twice a night, like pre-op, but I will TAKE that!)

Not sure if it is all dietary or also more time since surgery. I am just over 2 weeks since surgery and only about a week since catheter removal. Starting to see some light at the end of the tunnel - not there yet, but if improvements keep happening, then there's hope and it is getting there!

Trying to be patient and celebrate the little 'wins'!!!

Hope some of this helps (everyone) - +God+bless+

 

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Thanks for the input. We are at about the same time frame since surgery. My diet is pretty good but for a cup of coffee in the morning. No alcohol. Sounds like your are progressing well so soon after surgery. Can't get through the night dry. Pretty much leaking dribs and drabs 24/7. What I've read says that most of us see good progress by 3 months, so 3 weeks is very early still, and I start PT for incontinence soon. Yes, patience.

 

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It is still very early and I have good days and worse days! I don't always make it dry through the night. The previous post was after several good days - been some not as good days since and it gets you down after being pretty excited after several good ones - ride the roller coaster, I suppose!

Last night, had to get up in middle of the night and change out of everything! After that, made it through the rest of the night without any issues and so far today has been a good day. I did have a lot of activity over the weekend - so not sure how that affects things yet. I'm tired of just sitting at home, but after a pretty busy Saturday and Sunday, I'm pretty fatigued today.

Hoping there's light at the end of the tunnel...and it ain't no train!