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Posted 3/31/2009 3:09 PM (GMT 0)
Hello everyone,

I am 48 years old and recovering from a RP on 3/9/09. I was diagnosed in January from a 12 core biopsy, 1 of which was positive with gleeson score of 6. My PSA was 2.9 and was at stage T1c. I had my catheter out 3 days ago and I think I'm doing quite well, no sign of incontinence at all. The surgeon managed to save my nerve bundles and I go back to him in a couple of weeks to get the histology report. So far so good. Obviously feeling this good leads me impatiently onto the next big hurdle, i.e erections. 31 days past surgery is no time I know but from those of you who read this who have returned to 100% function, how long was it before you got things back? I would be interested to know also if any improvement is gradual and at what rate. Currently I can get about 50% which would not be of much use. Obviously post op soreness would rule any attempt at intercourse out anyway but your comments on your experiences would be most welcome.
Posted 3/31/2009 3:17 PM (GMT 0)

Welcome to the site and sorry you have to be here...

You'll have to wait and see how YOU do in the ED department. We're all different and have different results. I'm nine months post surgery and have zero in the way of an erection...

Posted 3/31/2009 3:23 PM (GMT 0)
Hello and welcome here #13,

BTW, that is my fave number, I was born on the 13th, always lucky to me. So far, it sounds like you have done well with your surgery and recovery so far. Your post surgical pathology report is important, and let's hope it's still a low grade case of PCa. As far as ED or sexual return, you will get every possible combination and answer to that one.

For myself, I was on a catheter for 63 days after my open surgery due to complications. My doctor left the right side nerve bundle alone and removed the left.

A week after my last catheter was removed on Jan. 19th of this year, I was able to start having natural errections on my own. At first they were in the 50-60% range, but within 2 weeks they were 100% as good and long lasting as pre-surgery. My sexual life is basically back to what it was before surgery, and my sex drive while not that of an 18 year old, but normal for a 56 year old. I have never used a pump, taking injections, or sexual aid pills for ED.

I admit, and I think most would here, that my sexual recovery is not normal, but an exception. An exception that amazed even my surgeon, my wife, and myself, and I am very thankful and hope it stays that way.

There are men here experienced with every method related to ED and sexual recovery, I am sure you ask any question you want and get good first hand experienced answers. Obviously, with your surgery only 3 weeks behind you, it's a bit soon.

Hope we see more of you here, great group of people, both men and women. It's done me a world of good to be here.

David in SC
Posted 3/31/2009 3:55 PM (GMT 0)
Hi Number13,

You are very early in your recovery process, but all your numbers and your recovery to date look very favourable for you. We're all different in our recovery times be it continance or ED. I'm a lot older than you and my continence recovery took me about 2 month, but ED took about a full year to recover to pre op condition using the little blue pill.

After a further 6-12 month my ED is now back to pre op without any pills.

Just remember to have patience and don't over do things to early.

All the best to you.

Magaboo

Posted 3/31/2009 4:08 PM (GMT 0)

13,

As your seeing in the other posts, everyone is different. However, I think most will tell you that 50% at one month is a very, very good sign. One word of advice, if the doc does decide to put you on a recovery therapy (pills, pump, etc), do it. Don't be the idiot I was and think your superman.

Smokie

Posted 4/1/2009 11:47 AM (GMT 0)

Greetings, 13.  Let me agree with Smokie - do what your doctor says.  I had surgery on Feb 4, catheter out on Feb 13 and Feb 16 managed an erection of about 80% and my wife and I were overjoyed - didn't do anthing with it but it was a great encouragement.  My doc had given me some samples of Cialis and said take them a couple of times a week.  When I got the erection so quickly I called the doc's office, talked to the nurse, and she said if you don't need them don't take them.  That was a BIG MISTAKE.  I never got more than 80% and even started to regress somewhat. 

When I went for my second 90 day PSA test, was given more samples - this time Levitra.  Took one and was back to 100% of presurgery.  There is a reason the doc wants you to take the pills after surgery whether they work or not so my suggestion is to do it. 

Now, I take the ADC equivalent of Levitra 2 times a week right before I go to bed.  If I take it in the day I do get the face flushing and stuffy nose, but when I take it at bedtime I never know I have any side effects.  I seem to be ready to go anytime with this maintenance type of approach to taking the pill.  By the way, look back at several threads regarding ADC - I have found them perfectly acceptable regarding their product and very customer friendly in dealing with them.  Don't pay the high prices in the USA. 

Best wishes - trust you will move right on down the path to complete recovery.  David

Posted 4/1/2009 1:36 PM (GMT 0)
Number 13

I agree with everything all the others have said and would add that it is important to have the blood flow back to normal as quickly as possible. If the doctor offers a prescription, use it. I started with the VED as soon as my catheter was out. Also used Viagra and Cialis. The VED worked but I had a problem with staying hard even with two rings. So my doctor switched me to injections at 6 months which work great with the Trimix. I also went to Levitra as the Cialis wasn't doing much.

I have progressed to the point that I only need the minimal injection dose 0.04 mcg of Trimix to stay hard for 2 hours. My noctural erections have returned within the past two weeks. I'm at 10 months past surgery. I also get the Levitra now from ADC.

Good luck

Posted 4/1/2009 2:03 PM (GMT 0)
Thanks for your comments so far guys. One thing I didn't mention is that I have been prescribed Cialis post op which I will continue to take. I was quite fit prior to going into hospital, a ten mile run was nothing to me. I feel stronger every day and I suppose the more normal I feel, the more an issue ED will become in my mind. Still, I have to keep reminding myself that it is early days yet.
Posted 4/1/2009 8:28 PM (GMT 0)
Hi 13,

I will chip in on behalf of my husband who was the same age, similiar stats, and also had good surgical results and complete urinary continence after catheter removal. The timeframe for his ED recovery has been 2 years of slow steady recovery, starting about 8-10 months post surgery. There have been times when we have become anxious about this - then more progress is made - steady and slow as various nerve pathways heal. My husband went for less ED interventions than some other guys here, but that was also his choice. Took meds at 4 months for a while then just when he thought of it. Some disappointments along the way (hence the need for open communication). I think the most important thing is to listen to your body, enjoy your good health, keep communicating, and have faith that things will continue to improve for up to 2 years for some - and much quicker for others depending on the individual and their choices for managing it. Be positive and patient if you can, as anxiety definitely complicates things we found. It sounds like you are making a fabulous recovery. Cheers to you.
Posted 4/1/2009 9:23 PM (GMT 0)
Number13

Welcome to the club that no one should have to join. Almost 12 weeks post-op now, the leaks are nearly gone but the stick is dead. If you are dry and at 50% erections with just meds this soon you are well on your way to full function. My surgeon advised me absolutly no attempts at sex for six weeks after surgery. My first attempt was at 7 weeks but with the Trimix injection causing that knawing aching pain, it was pretty much a wash-out. The best of luck to you in your healing process.
Posted 4/2/2009 12:32 AM (GMT 0)

Sandstorm

Do you know what the mix was for the Trimix? I can understand the aching pain with the Caverject/Edex but Trimix is usually a very reduced dose of Alprostadil. I do take an Advil before I inject with Trimix but it's more of a convenience factor than anything. My script was 20:30:1 Triple Mix.

The Caverject/Edex injections would give me a 4 hour erection but 3 of those hours was in a tub with very hot water. And I would take 3 to 4 Advil.

Posted 4/2/2009 1:33 AM (GMT 0)

#13, 

Welcome to the group.  My surgery RP was on 10/6/08.  I had great results after the cath was removed.  I am still hoping for the lead in the pencil. I am taking Cialis and on the VED and not haveing mush success.  Will discuss experementing with other drugs on my April Visit to the Dr.  I am very happy with my results so far but really frustrated with the little MAN!  Good luck keep us up to speed.

Corvetteman3

Posted 4/2/2009 2:15 AM (GMT 0)
best of luck on your recovery. remember, the most important thing is getting rid of the cancer. my experience has been opposite of most of the guys here. i had full erections one week after the catheter was removed but had to wait 6 weeks before my wife would try ic because of the docs instructions. my problem continues to be leakage. Its now three months since surgery and I'm back to pre-surgery fitness. I'm down to one pad a day but some leakage is still there.  i'm positive and know with patience i will prevail. you will as well.
Posted 4/4/2009 3:20 AM (GMT 0)
I am 4 months post surgery and not much going on at manville. My doctor prescribed cialis when I went for three months post PSA but haven't got the chance to use it because the VA don't carry them. So, I went and got another prescription for levitra of which it arrived from the mail this week. The thing is my Primary Care Physician at the VA lowered the dose to 5 and only 4 tablets per month. (actually they gave me 2 in 10 so I have to cut them in half). So this is going to be one tablet per week. I'll start my first pill tomorrow. I am not expecting a sudden rise to be useful right away, but just hoping that will jump start the blood flow and eventually go back to pre surgery condition.
Posted 4/5/2009 2:31 PM (GMT 0)
Welcome to Healing well Number 13. Healing is an interesting and mysterious part of the human body. From a spiritual standpoint I think God knows what we need when we need it. So take your time and reflect on the new focus cancer has created in your life. I hope you stop and smell the roses more often, love more, care more and share more. In due time your ability for a complete erection will come back and when it does you will be able to offer and share of yourself in ways that prior to cancer you would not have been able to do. You are a young man Number 13 and you have much much quality life ahead. Take it easy take it slow and enjoy the new chapter in your life. Stay in touch my friend and know we care very much about you.

peace and love
dale
Posted 4/5/2009 5:51 PM (GMT 0)
Kind words, thank you very much.
Posted 4/5/2009 11:47 PM (GMT 0)
hb2006,

The Trimix I was prescribed is as follows:

Papaverine Hydrochloride USP 0.3 GM / Alprostadil 5,000 MCG/ML - Stock Solution 0.005 ML

My next urology appointment is on the 21st. I have kept a detailed log for each injection and I plan to use it to change this medication. The hours of pain after an injection is wearing me down but I will continue to do my duty.
Posted 7/7/2009 12:07 PM (GMT 0)
I thought I would return to give an update and let you know how things are now that 4 months have passed since my surgery.

All seems good. My first post op PSA test showed a zero and with the aid of cialis the situation has returned to normal in the erection department. Things are feeling more natural every day.

I had to think a little before returning with what looks like to be a happy ending story. I know many post on here with slow or no progress to report. I hope my experience can show to others that you can come out of the other side of this with everything pretty much intact. I know prostate cancer and its effect is something I will have to live with for the rest of my life and of course the monitoring will continue with good reason.

For now it's good to take a breath and be happy with the here and now and be thankful for the progress I have made. Kind regards to all.
Posted 7/7/2009 2:56 PM (GMT 0)
13,

That sounds like a real good update for being 4 months out. Keep up the good work and please report your progress. Best to you.

David in SC
Posted 7/7/2009 8:17 PM (GMT 0)
Greetings, 13.  Congratulations on the zero.  Welcome to the club.  We trust this will be the first of many, many zero's in your life.  Also congratulations on the ED solution - glad things are working well.  David
Posted 7/8/2009 1:32 AM (GMT 0)

13,

Thanks for the update. It is encouraging.

Ted

Posted 7/8/2009 4:39 AM (GMT 0)
Thanks for the update. Sounds Awesome!!!! Congrats.
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