Life after RP

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I am wondering if anyone has sought out services or utilized services offered to them to deal with the mental/emotional aspects of life after radical prostatectomy and if they found it beneficial. I know sometimes depending on where you go for treatment for prostate cancer/surgery the counseling services are directly linked and available if you choose to utilize them but unfortunately mine was not. Any responses would be greatly appreciated.

 

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Probably any help one can get will be beneficial. Providing it's free. I have a small pension and between physiotherapy and other medical expenses not covered by Healthcare, financially it is tough.

 

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I had my treatment at the one and only hospital that does RP in Northern Ireland. I did have physio appointments and initially I got a phone call from a specialist nurse just after my regular PSA results. Five minutes chat and in all honesty a waste of time. Another hospital which does Radio/hormone therapy does have a prostate cancer support group. I decided to be my own advocate and I did have six sessions of counselling through a church. I did find that useful. Also my wife talked to our GP and he was offering me a six month course of antidepressants which I decided not to take. Two years down the line I am coping better and have very good spells.There are the occasional down days when you get fed up with the incontinence. I have often commented on the emotional impact of prostate cancer but I do think you learn to manage given time.

 

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My RP, salvage radiation, and hormone therapy was all done when I was still serving on active duty. All of this helped propel me into retirement, where the Department of Veterans Affairs picked me up. Nobody has offered me any sort of counseling. On the other hand, I have not asked. At my most recent urology check up at the VA, the PA noted that I had been quite distressed when my incontinence began ramping up four months after the end of radiation. I spent my mental energy trying to figure out how to cope with the constant leakage while trying to remain active. While moderately successful despite being constantly afraid of embarrassing leakage, I did physio therapy (no results) and Botox treatment (cut my leakage by 50% for 10 months). I then had the AUS implanted, which as I mentioned before, has been near-miraculous. I kick myself now for not having scheduled this surgery a year or more before I did. My mental state has improved dramatically as a result. Get the mental health counseling if you can, as it cannot hurt.

 

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I will say that I had a very difficult time adjusting at 8 weeks and leaking 60 ounces a day. My GP and Urologist were able to suggest therapists. I did not go, but found it helpful to know I had the option (though expensive).

I received the most support and understanding from a lesbian couple who had taken care of one of their mothers. They were able to listen and understand. Most people want to fix the problem or say others did not have a problem - some others did not, but many others just don't talk about it.

I think finding a Prostate Cancer Support group may be helpful. I was in several facebook groups and learned about a few groups that had Online Zoom meeting. (I don't have the information any more - search for it using google.).


Here is what I saved to a text file to share

D:\Medical\Prostate\Dr_Goldfarb\__Prostate Cancer Support Websites_20240122.txt (name of my file)


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@Ricard Thanks for all the info. Very helpful.
I have few questions for you since I have issues with incontinence 7 months after the RP and has improved some. However, since my PSA is going up, I probably have recurrence of the prostate cancer and most likely I will have to have Salvage radiation therapy, which will make the incontinence worse.
At what point after radiation you had the botox and the AUS and where?
Thanks.

 

[Archives1]

Hi-

I found my Phyisical Therapist to be a helpful sounding board when I was going through my most difficult period of incontinence following my surgery. Although not an MD she had worked with many other men suffering from incontinence and between that experience and her PT training was able to give be helpful insights has to where I was in my recovery. I echo the comments on support groups. I have found the NAFC Forum to be extremely helpful and I attend one in-person group in my community that is also very helpful. I have found that misery likes company

Good luck!