Somewhat Bewildered

An update for this.

I am now just over eight weeks post surgery and met my surgeon for my biopsy results on the removed gland. He confirmed the Gleason 9 (5+4) and said he was very surprised by the previous 4+3 diagnosis.

As others have said this score may not be particularly relevant after the gland has gone so I am consoling myself with this. I guess this higher grade may mean recurrence is more likely further down the road?

There was no involvement with the seminal vesicles or the lymph nodes that were removed so this is good news , my psa was undetectable at the last test 6 weeks post, but he has asked for another at 12 weeks post. My anxiety levels are already rising regarding this,

My overall health is good and I have been back to active farming for three weeks. Bouncing around in a tractor seat is not particularly comfortable, nor is it good for my continance but needs must- Spring has sprung and there is much to do. Generally my continance is improving and I am finding the squeezy app very helpful.

Unfortunately the surgeon was not able to spare any erectile nerves- this has been the hardest thing to deal with mentally. The Sildenafil has obviously no effect whatsoever and my 'oldest friend' feels cold and shrunken. I find the penis pump a bit humiliating and a little uncomfortable. I have not yet tried to use the rubber ring to see if I can maintain a usable erection but this is on my to do list.
I have an appointment to see the penile re-habilitation nurse (now there's an enviable job title) to discuss the hard on injections so for now I am pinning my hopes on that.

When I meet friends or colleagues they all say how well I look and things like 'good job they got it early' or 'that's all behind you now' I smile and nod but inside I'm thinking that I'm not sure they did, and I'm not sure it is.

Edited by member 05 Jun 2023 at 08:02  | Reason: Not specified

How wrong I was.

Many people still think this- I have become an Evangelist (some may say bore) and tell anyone who will listen to watch out for symptoms and DO NOT just think 'Oh, my slight urinary problems are just down to the aging process'

All the best to all.

It is very early days. Have patience, do you Kegel exercises, use a VED to retrain your penis and your brain by repeated use of the pump to get the blood flowing again. Your penis and your brain needs to be reminded of what it is for! You can massage your penis and scrotum gently which can be quite pleasurable, particularly if your wife/partner does it. You can also masturbate - you don't need to be totally continent for this or have an erection. I have recently  posted 'Preparing for Prostatectomy and Rehabilitation' which you may find useful. My 'oldest friend' as you call it was equally unwilling but with some help, imagination and support from wife our sex life is still great. If we can do it anyone else can too. Good luck.

Edited by member 05 Jun 2023 at 23:12  | Reason: Spelling error

Ah yes, the old "aren't you lucky it was only prostate cancer" thing :-( 

John quickly developed a standard response to this kind of comment - "yes, wearing incontinence pads and sticking a needle in my kcid to have sex is a laugh a minute." It shocked or embarrassed people but it also led to friends asking further questions and getting a better understanding of why prostate health is so important. His friends all know about the injections and pump - they have a laugh & a bit of a joke about it sometimes and that's okay. When friends have subsequently been diagnosed, they have felt able to talk to J about their worries or check out questions before an appointment, etc. 

If anything, I found it harder dealing with comments like "oh, my dad (brother / neighbour) had that and he's fine now!" to which my response is always "oh, that's so good to her. Tell me, does he use a vacuum pump to get an erection?" They usually have no idea because they have never asked their dad / brother / neighbour so there is just a stunned silence 🤣 

     I love the motorcycling advice, dark humour can and does help. Lol.

For me, I think that knowledge gives the power to make an informed decision about treatment. A high psa or an abnormal DRE may not mean the worst news but could (should?) Trigger some further investigation.

 I wish I had gone to my g.p earlier. If I am honest it was probably the gloved finger thing that put me off. In comparison to what was to come this was insignificant and if I had gone earlier maybe my op could have been nerve sparing and my chances of recurrence somewhat less.

 The reason I went for a checkup was reading one of those posters that this charity puts in gent's loos above the urinals. This poster was in my local cattle market-it may have saved my life.

Hi Farmer John

I was a farmer myself a few years ago, really miss it some days. I had a non nerve sparing RALP last September, so no natural erections. I found there was support for the physical effects of the operation but precious little on the mental effects. I asked various nurses, doctors and urologists about how I was feeling but no one wanted to chat with me about it. I felt totally emasculated and started to get pretty depressed. Fortunately, my work has a confidential service where you can talk to a therapist for an hour FOC. The guy I ended up talking to was a therapist in New York! I just opened up to him and he suggested what I was going through was grief. We finished chatting and the next day I felt so much better, just like a switch was flicked. Since then I have used two VED's, a Bathmate and Soma erect and after a few miss starts have now managed to enjoy sex. 

I would say keep pressing to talk to somebody, even though I've got some good friends, I found talking to a bloke who I have never met really helped. I had sciatica when I was farming but still had to milk the cows, which wasn't good. If you can, rest as much as you can, it's a major operation and bouncing around on a tractor seat might not be the best way to recuperate 😬 Having an understanding wife really helps.