Prostate Cancer Support Group

I have been reading this Forum for several weeks now ever since my partner found out he was diagnosed with Pca - Gleason score of 6. After getting a couple of opinions, and based on his age, he decided on Da Vinci vs Radiation.

Our communication is excellent, I have attended all appointments with him and continue to be positive and reassuring. What I am unsure about is how to help him once reality sets in. We are both well aware of the (temporary) incontinence and (potential) erection issues and have discussed both and we are realistic.

One thing I have not read about is whether any of you have found counseling to be of any help? There are few women on this forum so I will have to depend on you guys to aid and guide me here. Any suggestions during these first few weeks? Is depression a reality or concern? For the first time I am at a loss.....

I have to say that I have never written to a forum before, but after having read many of your posts I changed my mind as I find this group to be so informative and genuinely supportive. You all have been incredibly helpful, so I felt I had to join if for no other reason than to thank you. Thanks in advance for your help and support.

PP,

Welcome to this forum. Glad you were helped by reading, then took the risk of writing about your own situation. Some men are very fortunate. After the catheter is pulled they regain both urinary control and erectile functioning very early on. Usually couples in that category get lives back to normal very quickly and without a lot of trauma, especially if they get good news after their prostate biopsy post surgery.

There are other men, I'm one of them who had severe urinary incontinence and no immediate return of erectile functioning and I'm 9 months post surgery. It was interesting to me, because by training I have a Master Degree in Social Work, and was many years back a Medical Social Worker.

So as I sunk into a very deep depression, I knew exactly what was going on with me clinically. I was severely depressed. I was also grieving the different life adjustments I had to make post surgery. What makes it difficult is friends that you have will not understand the issues that you might face post surgery. From their perspective, if you've healed from surgery and received good news you have a happily ever after ending and have no need for additional support.

Most friends have no idea what's like for a man to find himself wearing adult diapers, unable to control when and where he urinates, and on top of that to lose erectile functioning. The only place I found to get good support was from people further along the journey than I was. I had no interest in talking to anyone who hadn't experienced what I was going through.

Has your partner read some of the threads on this forum? Would he be willing to post here and discuss personal issues? The great thing about this forum is not only can you ask any question on your mind, for example I asked if men experienced a change in the intensity of their orgasms. That's not a question I could ask anyone face to face. On this forum I asked the question and heard from other men. If keeping your identity private is important you use a screen name as you've done.

I don't think professional counseling is necessary unless the quality of your relationship begins to suffer as a result of surgery and you both can't find your way back to each other.

Coping with post surgery life can be devastating for a time. I think you'll know if you'll need professional counseling. What is needed right from the get go is support from those who have been there.

So I hope your courage to write will pay off and you will find the support you need for you and your partner.

Rick,

Thanks for your candid and thoughtful response, I greatly appreciate it. My partner has read some of the threads on this forum and I imagine it won't be too long before he finds mine! I hope when he does, he finds love and support behind it as it is meant to be.

I will definitely encourage him to place his own post and perhaps share his feelings and ask questions - I believe you are right in that he will want to hear from people who are further along in this journey.

Thanks again for taking time to respond.

Welcom, PP. You're right that most of our posters are men. But my co-leader MsSnick is most certainly a female and should check in shortly. She's been through a lot with her guy and can certainly provide some sympathy and perspective.

Speaking from my own experience, I think the most important thing at first is just to be there for you partner. It'll be humbling for him to be incontinent and to have to rely on you for so much. Just try to be cheerful and supportive.

The sex thing is tricky. You don't want to rush it--and pressure him to try something he can't do--but you want him to know you're interested as well. You could certainly encourage him to begin looking into ED drugs, devices, etc. to help along the healing. Most men who go through this surgery swear it won't happen to them, but it usually does. But there are things you can do to help, and the sooner the better.

Good luck.

Post edited by: hollywoodmark, at: 12/12/2011 12:20 PM

Hi Hollywood and thanks for your insight. I believe the Dr. is putting him on an ED drug immediately following surgery which I believe is supposed to increase blood flow to the penis. I also purchased "Saving your Sex Life" by Dr. John Mulhall after having read about it on this forum. While I haven't yet read the book, my partner has, and so far has been impressed. I hope it turns out to be helpful - time will tell.

PP,

Often your surgeon will not be the one directing Penile Rehab. In fact many urologists simply give ED drugs and leave it at that. Dr Mulhall is on the cutting edge of Penile Rehab. It's the best info you can get today.

Know this, your partner may not be interested in sex if there is a total lack of urinary control. If that happens don't take it personally. It is what it is, a reaction to losing urinary control.

If you would have asked me pre or post surgery if I would be willing to stick a needle into my penis, I would have told you were crazy. After reading that book and evaluating where I was after I had regained urinary control, I've come to understand for me how important injecting is for my healing. I now inject once a week.

Hollywoods points are right on the button, for me the thought of urinary incontinence was even more humiliating than the thought of not being able to perform due to ED.

Rick,

If not the Urologist, who will be directing Penile Rehab??

It could be your surgeon, it could be your local urologist, or you might need to find a Urological office that performs Penile Rehab. I had my surgery at UCSF. While my surgeon is in that office he has a Nurse Practitioner in charge of Rehab. I don't see my Urologist.at all. Many Urologist's only tell men to take ED medication and that's the extent of their rehab. Dr Mulhal warns men they are in danger of developing permenant damage in the form of venous leak if they do not have erections 4 months post surgery.

It's very possible your partner may experience erections by then. I didn't which is why I went the injection route. Not every Urologist's office is prepared to teach a man how to inject. You have a few months before you need to make that decision, but start by asking the Surgeon's office if they teach injecting. If they say no, you can ask if they can make a referral. If they don't know then check with your local Urologist.

Post edited by: RickRed40, at: 12/13/2011 08:09 AM

PP

Let us know how your partner's surgery went.