HealingWell
Search Close Search
☰

Prostate cancer - E.D. problems

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/1/2012 12:35 PM (GMT 0)
Hi,

I'm Greek and I've joined for the 1st time a forum like this. I'm 52 yrs old.Here in Greece,there is not unfortunately such a forum in order to exchange opinions and share the problems we face each day. I've been operated in May 2010 for prostate cancer and then followed radiotherapy for 3 months. Till June 2011 I received also hormontherapy (Arvecap + Bicatin). I followed monthly PSA controls till Nov 2012. Now I have to check it every 3 months. Thank God till now all is Ok.I hope that it will remain as lowest as possible. I face problems with E.D. (I take Cialis 5 mg each day). I would like to receive as much info from people facing the same difficulties.
Thank you in advance.

I wish to you all a Happy and full of health New year.

Post Edited (Lam_Kar) : 1/1/2012 5:51:18 AM (GMT-7)

Posted 1/1/2012 4:09 PM (GMT 0)
This is a frustrating problem for most men. If you do a search on Healingwell for "penile rehab" you'll find some good information.

There's also a good video from Sloan Kettering that I found informative:
http://www.youtube.com/watch?v=ie8NkOu2VNA

Good luck and good patience, and Happy New Year.
Posted 1/1/2012 5:46 PM (GMT 0)
One of the better books on the subject (in my opinion) is "Saving Your Sex Life : a guide for men with prostate cancer" by John P. Mulhall, MD. He is a Director at MSKCC (Memorial Sloan-Kettering Cancer Center).  Published 2010.

He also has a number of lengthy videos that are very helpful. The links have been quoted here often. I'm sorry I don't have them close at hand, but I have seen them linked directly from www.mskcc.org.

I am also taking the daily 5mg Cialis, more for general penile health than erections, as I was not "nerve spared".

Welcome to HW. We are not doctors, but will share experiences with you. 

Posted 1/1/2012 5:47 PM (GMT 0)
Thanks for your info Jazzman1

Post Edited (Lam_Kar) : 1/1/2012 11:14:05 AM (GMT-7)

Posted 1/1/2012 6:05 PM (GMT 0)
Thanks 142 for your support. I believe that the doctors always hide sth from us.
For this reason we must share our experiences we have for our illness.This will help us to understand better our situation and feel more confident.
Posted 1/3/2012 7:06 PM (GMT 0)
Hi,

After the ORP in May 2010, I continue having urinary incontinence problems. The situation nowadays is better than the past. Does anybody have the same problem and if so what is the time-limit given from the doctors?
Posted 1/3/2012 11:05 PM (GMT 0)
Lam,

My DaVinci/robotic surgery was in October 2009. I got the standard "most patients regain continence over time".

It is also interesting to ask your urologist what he thinks "continence" means. As patients, we like the "Leak Free, Pad Free" definition, but I think that is rarely what the doctors mean.

I was down to two, sometimes only one, pad per day at the time I started my IGRT, late April 2010. Since I was told that radiation was likely to have an impact on continence, I had to accept a possibility that it would not get any better. In fact, it got worse, but now, about 18 months post-RT, I am improved, back at that generally one pad, frequently two, rarely three per day level.

I still do the Kegels, and still am very careful about food and drink that are known to cause bladdder irritation. I guess I am not one of "most patients". I do not consider myself "continent".

(My post-op pathology was T3a, with multiple EPE and positive margins, Gleason 4+5.)

Posted 1/4/2012 8:06 AM (GMT 0)
142,

According to my doctor, each person needs his own time to recover from incontinence. I believe that the doctors having operated so many patients they should have a better statistics for the average time needed to be leak free or for E.D. recovery.
Now being 52 yrs old, I feel that I have lost my real life. I'm feeling angry when I must always think that the relation between me and my wife will be like the one between sisters and brothers.

Although my doctor is considered as one of the ten best surgeons in whole Greece, he never gives me a clear reply.As you understand this causes me anxiety. I can stand any problem but I would prefer having all information about the healing progress.
The same happens also for the cancer. He keeps on telling me "You must be free for ten years but after this period cancer may progress again.We shall see then.Till then be calm and forget everything".

I thank God for sparing my life but of course I want to return to me pre - operation real life.
Posted 1/4/2012 9:55 AM (GMT 0)
Lam,
Take encouragement, your situation may just take time, research and work. Sounds like your surgeon is honest - he can't guarantee cancer free. I have been undetectable (<0.1) for 3 years and had clear margins, nodes and vesicles but still there is no guarantee cancer may not return.

As for ED I didn't start to see real improvements until 3 years out taking injections and already I am planning to one day be able to rely on pills only.

The incontinence I can't say due to your salvage radiation. Kegels are most important to aid recovery. I think you may have good chance of more recovery and a normal relationship with your wife. Watch that video that Jazzman sent the link for. The doctor's plan for rehabilitation is excellent.

Good luck for a great recovery.

Muz
Posted 1/6/2012 9:22 AM (GMT 0)
KickintheButt,

I tried to have Coverject injections for a month but there was too much pain after the injection so I stopped.
I went on taking Viagra 20 mg but no reaction and continued with Cialis 5 mg one each day. Little by little small erections occurred but not enough for penetration. As you replied, I think I have to be patient till the completion of about 3 years period after the operation.Maybe this is a normal period after OPR nerve sparing & RT & HB.
Your reply was very supportive for me. Thanks a lot.
Posted 1/6/2012 8:03 PM (GMT 0)
Did/Does anyone have been subjected to HB with the meds "Bicatin" and "Arvecap injections" ?
If yes what are the side-effects you encountered? Acc. to your doctor what is/was the period the body to clear up after stopping taking them?Thanks.

Post Edited (Lam_Kar) : 1/6/2012 1:06:53 PM (GMT-7)

Posted 1/6/2012 8:44 PM (GMT 0)
Lam,

If Caverjet is painful, see if your doctor would use BiMix or TriMix. They reduce the amount of the medication which causes pain. They have to be made by a compounding pharmacy, so may be more difficult to obtain for you.

I use TriMix, and there is some pain, but I've had worse for less benefit.

Posted 1/6/2012 8:59 PM (GMT 0)
142,

What are the real (not the manufacturer's potential) side-effects of Bimix or Trimix? Is there the case of creating fibrosis to corpora cavernosa?
Posted 1/6/2012 9:18 PM (GMT 0)
That's really a question for the doctors, but what I have seen and heard from my uro, it is a possibility. He thinks not a very high possibility, if you use it only once, perhaps twice, a week, and alternate sides and change injection locations.

But each of us has different reactions.

Here is a quote from a pdf file from the University of California Urology Department Q&A doc -

Q7. Are there long-term side effects to the use of injections? What are they?

A7. One possible side effect is the development of curvature in the erect penis, which can be painful and interfere with intercourse. This is called “Peyronie's Disease.” It is caused by a buildup of plaque or scar tissue inside the penis in the lining of the corpora cavernosa. These are the two sponge-like cylinders running the length of the penis into which the medication is injected. It is relatively rare and can be treated. You can minimize the risk of getting Peyronie’s by learning to inject correctly. This is not difficult.
Posted 1/8/2012 6:44 PM (GMT 0)
To all friends,

I have a question to make. Is Doppler-Triplex is considered the most basic examination for the penile vessels before undergoing any therapy with pills or injections for E.D.?
Posted 1/8/2012 8:13 PM (GMT 0)
I had to dig into a couple of books before I even found it mentioned in a glossary.

I don't recall anyone mentioning such a test here. You might look over on www.franktalk.org. It is a site intended for ED issues, and its founder is also a member here. I searched it there and did get a few mentions, and it seems to be used in ED cases.

Posted 1/9/2012 2:44 AM (GMT 0)
Lam,

142 has it right I believe. Your specialist should provide good material on optimal and safe injecting. Varying the site of injections, not just side to side, cleanliness and keeping the area injected stretched and still while you inject are all important. From the forum comments here, the side effects of injecting, while real, are not that common.

I would try bimix first and only if it isn't sufficiently effective, go to trimix, that was my experience. If you have nerves, trimix should have an effect. If you have nerves you should be able to rehabilitate them with regular blood engorgement.
Posted 1/9/2012 5:26 PM (GMT 0)
142, Kickingthebutt,


For Doppler-Triplex examination please follow following link.

http://www.brucegilbertmd.com/practice/presentations


I could not find any other links in English lang. Most I found in greek lang.
142,
Thank you very much for your efforts for helping.
Posted 1/11/2012 4:52 PM (GMT 0)
Hi to all friends,

Last night happened the unexpected. After 12/5/10 (taking Cialis 5 mg each day) I had for the 1st time a spontaneous erection by 80%. Guys, I think I return back to my normal life again. Thank God!
Posted 1/11/2012 5:46 PM (GMT 0)
Wow !!!, that is great news, congratulations, just goes to show you that action and patience does pay off.
Posted 1/11/2012 5:52 PM (GMT 0)
trimix,

It really does !!!!!!!!!!!!!!!!!!!!!!!
Back to life I hope. I wish the same for all undergoing the same problems.
Posted 1/11/2012 6:05 PM (GMT 0)
Good news!

Maybe taking that daily Cialis has more value than we think.

Gives hope for the rest of us!

Posted 1/11/2012 6:15 PM (GMT 0)
142,

Just imagine that at am previous day I called the andrologist and booked an appointment for a Doppler control.
This morning I have cancelled it.
Posted 1/11/2012 6:18 PM (GMT 0)
142,

I just forgot to say, that during the erection enough amount of urine was coming out. Can sb give me any explanation for this?
Posted 1/11/2012 6:50 PM (GMT 0)
Lam,

We have had a number of members complain about that, and the feedback from doctors has been just to be sure that you empty the bladder before sex.

I've not had that problem (OK, until TriMix I didn't have erections at all, so..), but have seen that even with an empty bladder, the pump I use will still pull out some urine. You could speculate that it is because the pelvic floor muscles are not strong enough yet, so there is just leakage.

But, you are not alone with that complaint.

✚ New Topic ✚ Reply
123

HealingWell

Connect With Us
© 1997-2024 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.