Long Story: AS to RARP

Following biopsy, MRI and bone scan there was to be a multidisciplinary team meeting. We naively assumed the next step would be an appt to discuss results but it was at this point that the NHS communication system fell apart completely. The first we knew was an appt. letter that included a leaflet about Robot Assisted Radical Prostatectomy (RARP). There followed a series of to and fro telephone conversations, a series of appointments with letters arriving on or after the day or duplicated. Appointments involved four different NHS locations, sometimes two on the same day. We only got the bone scan result (all clear) at the meeting with the oncology radiation consultant (the letter arrived later). She was also able to show us a well circumscribed lesion on the MRI. 

We received multiple NHS leaflets and also, perhaps foolishly, asked for literature from prostate cancer UK - we were soon overwhelmed. Some info was contradictory in details - we now understand that NHS trusts differ.

Our overriding observation through this time was "Yes the NHS is prioritising life saving treatment but that the profound psychological and emotional roller coaster of all this is not really understood or supported."

Ultimately we decided to accept the offer of surgery, side effects were discussed and the potential risks of radiation therapy were worse and, as others have noted, surgery is rarely on option after radiotherapy but after surgery a variety of treatments are possible if there is breakthrough and recurrence.

Hubby wanted the cancer gone. I had not understood the psychological effect for him of living with the diagnosis.

To be continued...

Apologies for delays between posts - lots going on with family etc.

Today is 4wks post-op and hubby is off to get bloods done for PSA and glucose.

Will post the surgery details next.

I believe that essentially they are the same procedure. RARP (Robotic-Assisted Radical Prostatectomy) and RALP (Robotic-Assisted Laparoscopic Prostatectomy) 

Your:

"Hubby has six surgical wounds in lower abdomen which he cannot see properly without a mirror! Four are approx 1.0cm; one above belly button slightly larger (~2.0cm) and one on his left in the belly fold approx. 6.0cms"

Reminds me of when I took my two young grandkids swimming a few weeks after surgery. We hadn't told them anything about the operation, they'd have been too frightened. Oliver then, 8 years old, noticed the 6 circular scars and asked how I'd got them. I told him they were bullet wounds from when I was in the Army. No wonder I'm his hero. 🙂

Edited by member 03 Jun 2025 at 10:50  | Reason: Additional text

Long Story continued...

The first few days and nights after discharge from hospital were difficult. Passing urine was extremely painful (“like a knife”) and messy because difficult to control. With our medical and nursing backgrounds it was difficult not to worry about the worst possible connotations or to imagine the damage being done to the urethra. With no urine bag several trips to the bathroom were needed during the night. For Hubby the suprapubic catheter was a hindrance not a help but it was removed on post-op day 6 and he felt better. Fatigue was also a major issue and persuading Hubby to accept that he had had major surgery was a continuing effort! He did succumb to having a morning nap if he got up early and also an afternoon nap depending how he was feeling. There were good days and days when he felt life would never be the same – in some ways it won’t but getting to accept the positive aspects of that have been an emotional struggle.

Things have gradually improved with decreasing abdominal / pelvic pain and better urine control (now only the occasional drips after sneezing or other abrupt movements). He was cheered by chatting with someone who had the same procedure (privately in Germany) who thought Hubby was doing really well at 4 wks post-op. His experience in Germany was remaining in hospital with good care for 10 days and only discharged once the suprapubic catheter was removed. He cannot imagine how we coped at home with the difficulties and worries the first week brings!

We are now waiting for the post-op review and PSA results, fervently hoping that will be favourable. I will update this post once we have the results.  

(I will make a separate post for the suprapubic catheter experience and add a separate post to the ‘biopsy trauma’ conversation.)

Best wishes to all on their journey.

So - the current state of play in this long story:

Follow-up consultation with the operating surgeon was 19th June, six weeks and 2 days post-op.

Results are PSA undetectable and pathology Gleeson Score 3+4=7 as before with no involvement of capsule and no spread to seminal vesicles. Op was nerve sparing as much as possible. So the outcome of surgery is the best that we could have expected.

There are still some issues with daytime incontinence which hubby finds annoying but he was reminded by the surgeon that only using one pad per day and dry at night is very good progress at this stage - patience is a virtue and, as others have said, he was also told that recovery can take many months and often up to a couple of years.

He has been given a penile rehabilitation plan with a note for the GP to prescribe a pump - details not specified.

Hubby is trying to process all this but at the moment is not showing any particular signs of anxiety. However, I seem to be in the doldrums - unable to concentrate on anything specific and escaping by reading forums or doing jigsaws. The recent emotional impact thread had some valuable pointers for me. We'll see how we go.

Best wishes to all. 

Hi Aurwen

Good shout and you will be in safe hands as the team there are fantastic as is the equipment. Opting for a leading surgeon will reduce most of the post-operative side-effects. I’m 5+ years post surgery and hardly give it a second thought. 

Recommend a media box like a Roku and an HDMI cable although the room TV might have updated now be more smart. You’ll have lots of time to burn postop so some good TVs and movies will feel the space.

Keep us posted with your progress.

Best regards,

Simon