How come all these side affects are ''glossed over'' by the medical profession

Hi Mack,

I totally get where you are coming from. I'm in sort of the same situation.

After initial diagnosis, I decided on AS, and 18 months on still keen to continue this (if they allow it). At my recent clinic visit to discuss the latest biopsy results, the nurse mentioned the consultant has been very keen for me to come off AS and take radical treatment. 

The 1st biopsy 18 months ago identified as Grade 2 T2 N0 M0. The recent biopsy was a template, but not exactly. My prostate at 26cc was too small for the template so it was done manually to replicate the template.

Cutting to the chase, at the clinic the nurse stated its very unusual in her experience, but I am now showing as Grade 1 with less than 5% of the sample tissue showing adenocarcinoma. They are not dismissing the earlier Grade 2, but latest samples are different. However they do keep reminding me, these are only samples and its very easy to miss the PC. 

For me the AS has not really messed with my mind too much. I'm very much in favour of quality of life. But should I find myself having to make a treatment decision, I'm currently leaning towards 5 session SABR with no HT, that is if I can get the necessary referral to a hospital that will do this, and if they find me a suitable candidate. If I have to pay privately for a SpaceOAR thats fine, its a no-brainer I wouldn't even consider it without that. 

The whole situation may well change and options or decisions might not play out this way.

This forum is amazing and very informative, but I do also know personally people who have had RP and some who have had RT. I've heard good and bad from both options, so its very difficult to apply this to your own situation as clearly every outcome is only every going to be unique to that person. 

I think that is the challenge. One of the main things I have learned from this forum is that although we have the same cancer, actually we are all different in how it affects us and how we respond to treatment.

So you have to decide knowing that there might be adverse side effects from RP (and you know there will be for the first few weeks) but it might all turn out OK, just as there might be adverse side effects from RT (but less acute and possibly different ones long term) and others from the HT that may well be needed alongside RT. The only side effect of AS is anxiety and only you will know if you can cope with that - and you will have to accept that you probably will need one of the other treatments eventually.

My view is that current RT is less likely to have problematic side effects than RP, but RP has the advantage that PSA should drop down to essentially zero (below the measurement limit) so that any recurrence will be picked up very sensitively and quickly. And RT is suitable for salvage treatment in that case, while the opposite is most likely not feasible.

I would certainly agree that for most men doing nothing with a Gleason 8+ prostate cancer is not an option. The exceptions might be men who have a limited life expectancy for some other reason.

But, although statistics are hard to come by, my impression is that the rate of progression without treatment may not be quite as bad as Ned@1 says. For example, in the section of this video from 16.27 Dr Scholz claims that more than half of Gleason 8 cancers will NOT metastasize over a 10 year period and that the percentage only goes above half for Gleason 9+.

https://www.youtube.com/watch?v=GhQCredt9mM

Also, I was interested to explore the life expectancy nomogram on the Kattan website. When I was diagnosed with Gleason 8 at 66, I thought my life expectancy had just been drastically shortened. However, when I looked much later at this nomogram, the implication of it was that I would have had a sporting chance of making it to 80 even without any radical treatment and, who knows, I might even have joined the ranks of men who die without knowing they had prostate cancer.

Mack,

I was a similar Gleason Score of 7 (3+4) — with positive samples in the biopsy being mostly 3+3, with one focal area showing 3+4. The issue for me during about 9 months of AS was precisely the concerns raised by others above - it needs to be *active* and yet PSA is not necessarily a direct measure of disease progression. My PSA went up and then down again over 12 months - causing me to conclude that opting for surgery was better than the ongoing anxiety (around doing all the right things in terms of lifestyle, diet and exercise) and uncertainty of regular monitoring. I am 49 years old and relatively fit, so to elect for surgery early meant better predicted outcomes.

6 weeks later and I’m pretty much back to normal, except for ED - which I understand will be a process. All signs are positive for a “good enough” erectile function though. I think the ED aspect is the most sensitive and very much something that will vary personally. It has brought a different level of expectation into my sex life. One that brings vulnerabilities and one that is resulting in a more intimate and emotional connection with my wife as we work through it together. Like I say - this is six weeks in but it is worth saying it how it is. The decision is yours and yours alone. Whatever you do - life is different now. But that doesn’t have to mean it is worse. In fact, for me at least, this is all part of life’s many enriching experiences.

In your case, the argument for AS is strong - as it was for me. Although that pattern 4 will have the consultants paying closer attention (and something that can’t be measured without another biopsy). I can really empathise with where you are at. I will never know if opting for surgery was the better choice but I can say categorically that I am in a better mental state now, without the uncertainty weighing on me.

Hey Mack-Mack,

HIFU looks an interesting option. It was one I explored as well but was told there was not enough of a focal area detectable in the MRI for it to be effective. This was after having undergone a further higher contrast MRI too.  And yet it turns out there was indeed a focal area (of max 20mm diameter) that they only found in the post-operative histology. Anyway - HIFU does sound worth considering as an option if they deem it suitable for you. I’m sure others on this forum can offer their advice and experiences with that.

The singje port procedure does give comparatively quicker recovery times from what I understand - in terms of being active post surgery, as there are fewer surface wound to heal. But the underlying operation is the same. And the underlying wounds will still take as long to heal. The direction at which the surgeon approaches the prostate appears to have a bearing on continence - in that the retzius sparing method leaves the ligaments involved in continence control there more intact I believe. But it’s not all or nothing. A lot more will be dependent on the nature of your surgery in the first place (which is determined by how much the disease has progressed), as well as your own anatomy and the skill of your surgical team.

It’s a lot to think about. The posts on this forum are full of people going through the same questions. And questions to which there’s no simple answers.

Good luck in your research and speaking with consultants. And do post your thoughts and discoveries here too. 

Edited by member 02 Jan 2025 at 20:19  | Reason: Corrected a mistake

Hi Mack,

I’ve been on AS for six years and have been really happy with it. I was diagnosed at 56 and, like you, wasn’t keen on the potential side effects of treatment. For context, I was 4+3=7 in one core only on my first biopsy, then 3+3=6 in one core on my second a year later. I’ve had a PSA test every three months since December 2018 and an MRI every two years. My PSA is currently 2.4. My latest scan has shown a new lesion which has worried the radiologist, so I’ve had a biopsy today. Depending on the results, I’ll either carry on with AS or opt for treatment. My position is while I’m comfortable with risk, there may come a stage when I’m not if and when the cancer develops and the balance starts to tip. But I’ve had a great six years; basically the same as it ever was, to the point where I’d almost forgotten I had cancer and was a little shocked when I got a call about the scan. If you can handle the mental side, I’d say it’s well worth doing. It’s given me time to assess my situation and get used to the idea that I may need treatment at a future date. Best of luck. 

I think part of Mack’s dilemma is one of the oncologist met said if you were my son, father partner I would recommend surgery. This was followed by AS and radiotherapy. I think this conflicting info/ advice would lead to many people feeling very conflicted when trying to reach an informed decision.