Post RARP follow up

User

Posted 15 Feb 2025 at 08:59

Good morning. I had a RARP on the 5th of December, I have my continence back to about 99.99999% only have an occasional dribble when I crouch down to pick up something. After I had my post op appointment the surgeon sent a letter to my doctor and the CNS at North Devon hospital for a prescription of senefidil and a referral to the men’s health clinic and for three monthly PSA tests.

I have heard nothing from anyone, I was expecting a letter with labels for the follow up tests and a health clinic appointment but have received nothing as yet, not even a phone call.
Is it normal to take this long ? Also regarding the viagra prescription do I need to contact my doctors surgery ? At the end of the post op appointment the surgeon said they would contact me.
I am not worried about it and can chase it myself, just wondering If I am being impatient.

Any advice would be appreciated.

User

Posted 15 Feb 2025 at 09:37

I don't know the specific timings for post RARP appointments. I think you should chase them up. My NHS hospital is very bad at joined up services, I've been referred for other things and then nothing happens unless I chase them.

Dave

User

Posted 15 Feb 2025 at 13:31

Hi Paul,

Great news on your continence.

Sometimes things go quiet for a long time, but it might be worth calling your surgeon's secretary to check that you're still on the radar.

Regarding sildenafil (or tadalafil) I think it's worth approaching your GP first, but if that fails try your surgeon again.

In my case I was batted between GP and surgeon. Eventually my surgeon sent a letter to my GP asking for a repeat prescription for Tadalafil. Over the five years since surgery, I've probably called my surgeon's secretary a couple of times or so to chase up on PSA test requests due to cancelled appointments etc..

One other thing you could try, is contacting PALS (patient liaison service) with a note of caution that in my case, they made appointments for me which were subsequently cancelled.

Good luck,

Kev.

User

Posted 15 Feb 2025 at 16:13

Hi Paul

Glad to hear that things are going well on the continence front. I’ve still got a little way to go but it’s definitely improving.

When I was discharged post op on 1 January I had 3 appointments come through on my phone that day, one for the consultant/surgeon follow up at 9 weeks, one with an andrology nurse at 12 weeks and then a further follow up (I’m not sure who with! 🤷‍♂️) in June and so I would definitely chase them up. As far as I understand it you should have some follow up appointments, especially with the consultant. In his pre op notes he stated that he would prescribe Tadalafil at this appointment and so that’s what I’m currently expecting. The hospital also gave me a form to take to the GP’s for my first post op PSA ready for the consultant appointment and so this is booked in for week 8.

I hope things continue to go well for you

Edited by member 15 Feb 2025 at 16:18 | Reason: PSA test

User

Posted 15 Feb 2025 at 16:38

Hi Paul

That's great news on your continence. Also, daily pelvic floor exercises are key to aiding and improving your recovery.

You're not being impatient. Definitely chase up all your appointments or at least your forthcoming ones. At each appointment, I request the next one be put in the diary before I leave. With regards to your prescription, just speak to your GP surgery. They should have all the notes from your consultant and will be able to prescribe your medication as per your consultants letter. When you have your PSA tests, ensure it is from the same place each time.

Wising you all the best in your recovery.

Seb

User

Posted 15 Feb 2025 at 17:02

Hi again Paul.

Had RARP two years ago.

I think my post op appointments were as follows.

The surgeon telephoned me about two months later with my histology results and made me an appointment 3/4 months later at the erectile dysfunction clinic. There I was prescribed Invicorp. They contacted my GP and he has put it on repeat prescription for me.

I've had two brief phone calls from my clinical nurse specialist at about 6 months and twelve months post op. I had a telephone call from a locum urologist about a year post op who seemed to know very little about me.

I've organised my own three monthly PSA checks at my GP's surgery.

Thankfully I'm okay, but I've found the after care service pretty woeful.

Edited by member 16 Feb 2025 at 08:19 | Reason: Late edit

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