Hi all
After a couple of weeks away from PCUK and seeing some of the questions on here I thought I would write a summary of my PCa journey so far. Hopefully, it will help someone who is a few weeks/months behind me. I also think I may well find it therapeutic to write this down and get it out of my system! 😊
I had RARP just over 3 weeks ago and am recovering well.
I first became aware of a possible issue back in August this year. I went to my GP for a health MOT, I’m 55 and so thought it sensible to do so. I keep myself in decent nick. I weight train and run regularly, I play quite a lot of golf, don’t smoke, am not overweight and though I do occasionally drink more than I should I don’t really drink much (I actually haven’t had any alcohol since August as the idea of ‘Hangxiety’ with all his going on didn’t seem like a great idea!). I’ve been a pescatarian for about 7 years, most of my friends would see me as someone who makes a decent effort to remain fit and healthy. I have no family history of PCa, and I had no symptoms at all to suggest there may be an issue.
The GP called me the morning after the blood tests, which as I am sure a lot of you can relate to, made my heart sink when I saw the number as it was unlikely to be good news. He said my PSA was elevated and I should get it looked into, it was 5.2 and above the 4.0 threshold for further investigation. I had had a PSA about 2 ½ years before and it had been 3.1, with hindsight and knowing what I know now that should have been a warning as a PSA of 3.1 aged 52 is a little high for a normal sized prostate. He said I would be put on the 2-week referral rule, and I will hear from the hospital in due course. I am fortunate to have private medical insurance through work so I asked if I could go down that route. He said it was my choice, and he sent me a referral letter explaining the situation.
I am pleased I did start this process now as I would not have found the surgeon I eventually used. However, at times it was extremely stressful, and not all private hospitals are the same, that is clear. I found a urologist locally, arranged an appointment and went from there. He met with me, performed a DRE that he said felt perfectly normal, and arranged an MRI. I had the MRI a week later, he then called me over a week afterwards (after being told I would be called in a few days, and me chasing the hospital for the results, and them saying the consultant had them 2 days after the procedure. There certainly didn’t appear to be any urgency from the consultant which I hoped meant there was nothing to worry about) and told me there were 2 areas of concern after the MRI. He told me I had a 50-80% chance of having PCa… I was left pretty open mouthed by being told that over the phone. He then said he would arrange a biopsy, and his secretary would be in touch. This was one of the most stressful times for me as I could not get hold of his secretary, and after two weeks of calls, chasing and worry she said they were struggling to get the right equipment and an anaesthetist, and it would be 6 weeks minimum before I could have the biopsy. It was at that point I started to look elsewhere, found another consultant an hour and a half away and arranged to see him. He explained in a lot more detail the results of the MRI, he said I had a 60% chance of having PCa and booked me in for a perennial biopsy 2 weeks later.
The biopsy was not as bad as I had feared (apart from the 7 hour wait dressed in the fetching medical gown we all get to wear) and he said he would video call me with the results if I liked to save the 3hr round trip. I had had a 2nd PSA when I went to see him and that came out as 4.7. He called me the following week. With hindsight it was a bit like carry on Dr, as he couldn’t get the video to work so I was speaking to him on a blank screen. He confirmed I had PCa, Gleason 3+4, 13 out of 25 cores positive and it was present in both sides of the prostate. A staging of T2c. I was, as again I am sure a lot of you can relate to, expecting the worst tbh after it felt like I was being drip fed slightly worse news every time I saw or spoke with someone. At the end he introduced me to a Macmillan nurse who had been there all along, but I couldn’t see her!
He said that a RARP was the way forward. I had by this time explored a few options online (as we all do) and realised that radiotherapy and/or brachytherapy might be an option. I asked him about that, and he said that yes brachy might be an option and he arranged for me to speak with an oncologist. I spoke with her, she said yes brachy could be a ‘good’ option, and recommended I go and see a colleague of hers in a different location who would be best placed to chat with about it.
While all this had been going on I had been doing as much research as I could (I used the paid version of ChatGPT4o which I found to be enormously helpful) and felt a lot more informed. I had also been chatting with a surgeon in London who offered RARP, using a Da Vinci single port machine, Neurosafe, Retzius sparing and could do the procedure in the next four weeks. I had also spoken with other surgeons/professors and had some good options with some excellent people, thought the single port option is not widely available.
I preferred the idea of brachy if I’m honest, I had spoken with someone who had a had a great result with it, and the idea of the less invasive procedure and very similar curative results seemed attractive. The oncologist I saw explained that due to the level of disease I has (13 of 25 cores) that I would need 6 months of HT if I was to have brachy (brachy and MRI guided SABRT radiotherapy were both options at this time), 3 months pre op and 3 months post op. After reading what I had about the side effects of HT, plus the latest surgeon I spoke to explaining about what potential salvage therapy would look like post RARP or brachy/SABRT I decided on the RARP.
I had been told I had a better then 90% chance of cure, whichever path I took.
So, I booked the date and had the surgery just over 3 weeks ago.
The surgery went well, apart for them finding a 10mm positive margin on one of the sides. Now, if you are not familiar with the Neurosafe procedure I would suggest looking it up. The NeuroSAFE procedure is a surgical technique that helps surgeons preserve the neurovascular bundles around the prostate during a radical prostatectomy. The acronym stands for Neurovascular Structure Adjacent Frozen Section Examination. The surgeon dissects the prostate from the neurovascular bundles, leaving them intact. The surgeon takes frozen section samples of the prostate's surface so a pathologist can check for cancer cells while you are still in surgery. The pathologist examines the frozen section samples whilst you are in theatre, if the pathologist finds cancer cells on the margins, they tell the surgeon who can remove additional tissue during the same operation. If the pathologist finds no cancer cells, the surgeon can spare the nerves. This happened with me. They found quite a large PM, he went back into resection and removed 50% of one of my nerve bundles. That is not ideal of course, and may well give me ED problems, but if I had not had the procedure the PM would have been found when the full pathology of the prostate was done post op, and I would very likely need further treatment. The removed resection was shown to have negative margins when the final report was done, so hopefully that means all the cancer has been removed. They did find microscopic cancer cells in the extra tissue that was removed, but not on the edges, and the surgeon was confident he got it all out. I won’t know of course until the PSA tests start, but my chances are much better now to be disease free than if I didn’t have the Neurosafe procedure...
My final report was Gleason 3+4, 24% of the prostate had disease, a staging of T3a and all margins interpreted as clear following the resection.
Interestingly one of the other surgeons I spoke to also mentioned the Neurosafe procedure but was not that keen. He said it could throw up incorrect results meaning disease could still be left or healthy tissue could be removed unnecessarily… I said this to the surgeon I eventually used, and he said it all depended on the quality of the pathologist, and he was very confident in his.
Another point that I wanted to mention is that every consultant and oncologist I spoke with, apart from my eventual surgeon, said that I could comfortably leave things until the new year as the there were no sign of EPE, and the cancer was contained. We now know this wasn’t the case, microscopic cancer cells had breached the prostate capsule, though undetectable at the time. Now I don’t know enough about it to say whether leaving it for a few months would have made a significant difference to the eventual outcome due to the slow growth rate of PCa, but I am now pleased I made the decision I did and got the prostate out as soon as I was able to.
Also, interestingly the insurance company would not pay for the NeuroSAFE part of the procedure as its not yet recognised by NICE… the cost was £240! To me that seems crazy, but there you go.
I wore a catheter for 2 weeks post op, not great but surprisingly tolerable. I was lucky to be pad free 2 days after the catheter came out. The Retzius procedure does seem to have much better continence results, but I am sure everyone is different.
I am taking 5mg of Tadalafil daily but have yet to see any positive ‘twitches’ with regards to erections. Having 50% of one of my NB’s removed will have an impact of course, so we’ll have to see where that part of the journey takes me.
I have my first PSA test in 7 weeks, I am sure I will be flapping before and after until I see the results, but hopefully the PSA will not be a problem.
If anyone wants to ask me any specific questions please do, I know how much this forum helped me when going through the very stressful time of treatment pathways etc.
Happy Xmas all and good luck to everyone on their PCa journey.
Edited by member 22 Dec 2024 at 17:01
| Reason: corrections