Seeking Advice and Sharing My Journey

Hello everyone,

I wanted to share my journey with prostate cancer and seek advice from this knowledgeable community. Here's a brief timeline of my experience:

Mid-2022: A slightly raised PSA at my GP's led to a biopsy. The results showed adenocarcinoma of the prostate with a Gleason score of 3 + 3 = 6. An MRI scan revealed a 26cc prostate with a PIRADS 5 lesion in the left posterior peripheral zone. My index PSA was 3.55.

July 2023: After experiencing a dull ache in the prostate region while doing pelvic floor exercises, I stopped these exercises, and the ache subsided.

October 2023: A follow-up showed my PSA had risen to 5.7. A second biopsy results

Diagnosis

1. Gleason score of 3 + 4 = 7, with 10-15% pattern 4 and cribriform pattern in 9 out of 22 cores.
2. Previous active surveillance for a Gleason 3 + 3 cancer diagnosed 2022

Histology

1. Right anterior 1 /3 cores - 3 + 3 = 6
2. Right posterior high-grade PIN
3. Right lateral 1/3 cores - 3 + 3
4. Left anterior benign
5. Left posterior 1 /3 cores - Gleason 3 + 3 = 6
6. Left lateral 6/6 cores cores - Gleason 3 + 4 = 7, percentage pattern for 10 to 15% with cribriform morphology
7. Overall 9/22 cores positive - Gleason 3 + 4 = 7

Recent developments: Following the second biopsy, I was counseled regarding robotic prostatectomy (RARP). A CT TAP and bone scan were clear, and surgery is scheduled in about 6 weeks. However, I've been experiencing a more severe dull, heavy ache in the prostate, especially at bedtime.

I'm now at a crossroads, trying to decide between continuing with the planned RARP or considering hormone therapy and radiotherapy (HT/RT). The presence of cribriform morphology suggests a more aggressive disease, which is concerning. The prospect of potential follow-up HT/RT after RARP, along with existing weak urinary flow, adds to my anxiety.

I'm struggling with worry, and it's affecting my eating and sleeping. If anyone has insights, especially regarding the pain I'm experiencing and the decision between RARP and HT/RT, I would greatly appreciate it. Any advice or shared experiences would be invaluable.

Thank you for your support.

Frank

I would be really surprised if the pain is anything to do with prostate cancer. Prostate cancer never* has symptoms until it is in other parts of the body. Once you have an illness you attribute every ache and pain to it.

If you have been given a choice of treatments it is because both give you an equal chance of full remission (probability of success is about 70%). If RP fails you can have Salvage RT which will work in about 1/3 of the 30% who need it. So you could probably consider RP as having an 80% success rate if you're prepared to put up with two lots of treatment and side effects.

So really your choice is between which side effects you prefer. If you have RT you will almost certainly have two years of HT, it doesn't bother most people too much, but it is terrible for a small percent of people. If you have to stop HT you are probably cutting the success rate to 65%. The ongoing side effects of RT+HT are minimal, in most cases.

At the cutting edge of RT, is five treatments with no HT, and it has the same success rate as all the other options. If you are offered that I would jump at it. 

The side effects of RP are often minimal, but if you get the worst outcome: incontinence and ED, it is much worse than anything you are likely to get from RT.

Though total incontinence is unlikely, if you think you can handle it, pop down the chemist tomorrow, buy a week's worth of incontinence pads and don't use the regular toilet for number ones for the next week, you might find you're ok with the symptoms, and the risk of getting it that bad is pretty small.

*Nothing is certain, but 99% is probably realistic.

Hi Frank.

Please see my bio for my journey thus far.

The choice of RARP or HT/RT is a common dilemma. I did a lot of research  and decided on RARP, but everyone's circumstances are different.  It's a very difficult decision to make. Likewise anxiety, loss of appetite and sleeping problems are common. You are bound to be worried.  Whatever treatment option you choose, I wish you well mate.

Adrian 

Edited by member 02 Dec 2023 at 19:28  | Reason: Typo again!

My first post here, so hope this helps if I can speak to some of your questions.

I was initially told I was "a bit young (60)" for radiotherapy and when diagnosed with PiRADS 4 with "suspicious of a minor T3a extension", was told that surgery was the most likely option.

Following the multidiscipline team meeting, I was offered either surgery (RALP) or HT/RT; the decision was up to me. That was hard to decide as I wasn't expecting it. They gave me 2 weeks to make a decision, and called me to see if I needed help in coming to a decision. The conversation with the MacMillan nurse was very helpful. I had done loads of my own research and got a bit lost in all the different trails of statistics and personal stories. In the end it came down to what two potential side effects I could put up with if I went with the surgery route. ED I thought I could live with, severe incontinence was not something I could live with. The chat with the nurse helped me to see this and I decided for the surgery. It helped that when I met the surgeon, he was very reassuring and answered all my questions thoughtfully and fully; this gave me confidence in him. Another part of my decision was being told I could have RT if required after the surgery, but I could not have surgery following HT/RT treatment.

I'm now just over 5 weeks post surgery. Recovery is slow and steady. I've read elsewhere of people being back to work after 2,4,6 weeks but I am some way from that. Surgeon said 6-8 weeks, and I think 8 weeks is realistic. Side effects: there was cancer in both sides of the nerve bundles so these were cut, I do have ED at present although taking some medication to try and improve this. It's early days and I see the surgeon late this week to get histology results and discuss matters.

Following surgery, you have a catheter in place, mine came out after 10 days. Then its like learning to potty train again. For me, right from the day of catheter removal I have had pretty good bladder control. There is the odd dribble when coughing, sneezing, blowing nose, standing up, uncrossing legs, but by and large I have good bladder control. I do use a pad, but its the smallest size and only one a day.

I was told to do the pelvic floor exercises before the operation which I did, and I do them every day post op. My control does seem to improve over the 5 weeks.

Things I want to ask the surgeon:

Why do I have internal intermittent pain between the two right incisions on my stomach. [The nurse told me everyone with RALP complains of this, but I havent read about it here].

Is it normal to have dull ache in testicles and end of penis when peeing?

What options do I have with ED? If the nerves were cut, does taking a viagra equivalent help?

Is it normal to have to pee serval times in the night after surgery, or is this just me? To be fair, the frequency is slowly decreasing and this was an issue before surgery.

Why am I fatigued? I am unable to get up before 9am, although 4 weeks ago this was 11am.

It's early days yet, but overall I am glad I did the surgery. I have read other stories here where the recovery is not as easy as mine.

I hope that is useful, and if anyone else wants to weigh in on my questions, feel free.

Mike

Hi Mike.

I had non nerve sparing RARP 10 months ago.

I was also T3a minor EPE. Pirads 4, Gleason 9 (4+5) I'm now fully continent. I was told viagra tablets would have no effect and they didn't, neither did Caverject but Invicorp works for me. It tends to be a bit hit and miss but I think that's down to my injecting ability rather than the efficacy of the drug.

When I jab the right place. Its brilliant and works in less than ten minutes. It's effective for a couple of hours. I was prescribed it through my ED clinic.

PS: Frank. I had my RARP almost five months after being diagnosed. It was cancelled twice, delayed for a month each time. Once for lack of beds and once for anaesthetists concerns.

Edited by member 21 Dec 2023 at 10:57  | Reason: Not specified

Sorry, I missed this in December - no, M1 is considered to be advanced prostate cancer and therefore incurable. There are some situations where a man has only one or two visible mets and can have high dose RT to these but it tends to just pop up somewhere else. 

Hi Frank

Nice to see you've got decent bladder control.

Constipation was a big problem for me after the op. Despite drinking cup fulls of the syrupy laxative the hospital gave me and handfuls of senna tablets. Like you, I daren't strain too much but sometimes when pushing I'd get a bit of blood coming from my penis

I went 10 days without a poo, and had to ring the doctor for some extra strong laxatives.

 Eventually she blew, and when she blew. she blew! it was like the world had fallen out of my bottom.

I apologise to those having a late breakfast.

Edited by member 02 Feb 2024 at 11:02  | Reason: Additional text

Long may that continue Adrian.

best

Frank