Treatments

Thanks Dave, very reassuring, I have my appointment tomorrow and was getting very stressed, seems the more information I get the harder it gets, I'm not the best decision maker  

Unfortunately getting distracted ( maybe rightly so) by other treatments, each with their own claims, and possibilities, even if I can't afford them?

Anyway thanks for that,

Cheers Edz

Hi !

By the sound of it you’ve meeting a Urologists and they know surgery / prostatectomy

Try to have second opinion with a Oncologists which I really think you’re entitled to and then you Will find out that there a several radiation pathways, all with curative intent.

So saying that only prostatectomy Will help you is just plain stupid and actually even if I was thinking of having a prostatectomy that Urologists words makes me think he is not a good option anyway.

But, yes it comes down to a personal choice in the end and from the look of your diagnosis you can probably go surgery or radiation with good results (eg curative pathway)

It really comes down to what you’re willing to risk. Incontince is prostatectomy and low risk when doing radiation. Erectile dysfunktion is right away when doing prostatectomy with a high chance of recovery while radiation and ED in the beginning is extremely unlikely but can actually worse over time.

Then there is hormone therapy which in your case may be used on perhaps a short term basis together with radiation but then we mostly talk fatigue, hot flashes, low libido and probably not a good erectile function and also weight gain, so lots of excercise to mitigate side effects

So, lots of things to take into mind before deciding, BUT you definetily have more then prostatectomy to choose so ask for a second opinion with a oncologist

Best wishes - Ulf

Thanks, some good advice and taken onboard

Cheers, Edz

I note that you felt under pressure to make a decision on the day during your meeting with the urologist, despite being CPG2.  It's not clear to me whether you were previously made aware of the biopsy outcome, and the purpose of the meeting was to decide the way forward, or if that meeting was to learn of the biopsy outcome for the first time.

My recent experience was as follows: (1) meeting with urologist to learn the outcome, and briefly discuss the range of options (2) telephone meeting with specialist cancer nurse a few days later to explore the various options in more depth (3) opportunity to consider the options and select one within a timeframe of 4 weeks. 

My situation was quite similar to your's: CPG2 / Gleason 3+4 / T2 N0 Mx / PSA 4.0 on prostate volume ~43cl.   However my Gleason 4 volume was low - 15% of a single core.  I was told that had my risk group been 3 or higher, the timeframe for decision would have been 2 weeks, instead of 4. 

In my case, the subsequent letter, which arrived a couple of weeks later, advised that the MDT's recommended way forward, which I accepted, was active surveillance.  

It may be that you are considered to be at near-term risk of changing from 3+4 to 4+3, hence the emphasis on active treatment.  I think that it would be useful for you ascertain your MDT's recommendation (if any) and supporting rationale.  

Hi Peroni

I wish I had the chance to read this before I went in for my meeting, to ask about the Gleason 4 volume number, I have never been shown this information, he did say that 5 samples from more than 30 showed any cancer. My prostate is 53cc with organ confined lesions and evidence of BOO (bladder outlet obstruction?).   

To be clear, I was informed of my biopsy about 3.5 weeks ago, just before Christmas, and to be fair to them, apparently this meeting today was supposed to be a decision meeting, so my fault really not being able to make a decision. (Unfortunately for me, I had Christmas, New Year, both granddaughter’s birthdays, one sister's funeral and another sister passing away, in that period), no excuse though, these people are trying to save people’s lives and only have my best interest’s.

Their recommendation was active treatment, the majority of supplied literature and internet advice seemed to say active monitoring was the recommended option. When I started preparing for the meeting over the weekend (unfortunately, more of an interview for him really) I realised that they concentrated a lot on my flow rate. It was the first thing the urologist asked me when I was informed about the biopsy (don’t remember much after that though) and wondered if this could affect their findings. When I asked, he said the recommendation was based a lot on my urinary flow (forgot to ask about my flow test last week) and quality of life, rather than just the cancer. Unfortunately, I have had problems with frequency, urgency and side effects for more than 50 years, and learned to live with it, don’t think it is any worse.

The outcome was that I decided for active surveillance, which he said was perfectly reasonable, and said it gave me a get out of jail free card at any time. At least right now, some professionals are monitoring any changes by PSA testing, maybe MRI scan and maybe biopsy (please God, NO), or if, I cannot live with the anxiety I can say, I need treatment.

I know there are people out there with much worse, and I wish them all the good fortune and quality of life possible, this may be the biggest mistake of my life, but rushing into a treatment could also be the same.

Regards Edz

Hi Edz

Thanks for the additional information. A couple of questions:

Was the BOO diagnosed via a cystoscopy (small camera mounted on a flexible tube inserted into the urethra and pushed up into the bladder), or by other means?

Did the flow test that you had yield any metrics, eg max flow rate, average flow rate, urine volumes before, discharged and after ('residual') ?

Anyway, it appears that there is a significant concern about your urinary function, so basically you probably have not just one challenge i.e. prostate cancer, but two, the other one probably being an enlarged prostate (BPH prostatic hyperplasia).

FYI, I also had a significant BPH issue, which was resolved at age 69 via a procedure (Aquablation) in Mar.2023, reducing my prostate vol from ~85 to ~43. Like you, I managed that BPH for a long time, but following a couple of acute retention incidents, surgical intervention became unavoidable. Tamsulosin made only a marginal difference to me. By the way, a poor flow / high retention is not just an inconvenience, over the long term it has an adverse impact on the bladder and possibly also the kidneys.

A prostatectomy would address both the benign and the prostate cancer issues which you have, but as I am sure that you are aware, at the expense of introducing the other challenges such as ED, and regaining continence, which everyone dreads. I presume that HT/RT would address only the cancer aspect, but I have no medical training so my knowledge of this option is very limited.

If you do not already have electronic access to your GP medical records, and such access if available in your area, I highly recommend that you obtain such access. I have access via the NHS app on my iphone, and download all avilable files to my laptop for ease of reference.

Perhaps one way forward for you would be to get all of the relevant facts together, and either (1) have a discussion with your urologist say after the next PSA test in 6 months (2) or if you are sufficiently concerned by the picture that emerges, request a earlier meeting, but this time fully prepared to make a decision to switch tracks from active surveillance to active treatment, should that be the best way forward for you.

Kind regards.

The (suspected) BOO was diagnosed via The MRI scan, I’ve had a cystoscopy before a few times, but not for at least 15 years. I was a bit shocked that active surveillance was a choice for me, because the doctor who informed me and the nurse who phoned, said it wasn’t, so I forgot to ask about my flow test.

I was told in the 1990’s that I had Detrusor sphincter dyssynergia (DSD), and over the years that, my prostate is larger than it should be for my age, so I do have more than one challenge, which a prostatectomy would probably solve.

I feel like I have a little reprieve at the moment (although cancer will do as it wants), to get a lot more information and opinions. I have always had concerns regarding my kidneys and bladder, but I seem to pee every two to three hours anyway. One part of me is saying a prostatectomy would solve a lot, but obviously the side effects are possibly devastating, but if I could get the flow sorted some way, I could concentrate on the surveillance or treatment paths. Not sure if I could get a surgical procedure that removes excess prostate tissue to treat a blocked urethra.

Did you get the Aquablation on the NHS? I was a bit shocked when I asked about private treatments, I didn’t realise, I then fall out of the NHS system, and the aftercare for however long it takes, has to be private.

Unfortunately, my records are a bigger problem, I retired last year and moved to England, and all my records consisted of was my prescriptions, which I told them about. My first 24 years were in the armed forces in Scotland, and I tried to get them transferred to my civilian GP unsuccessfully at the time. The next 24 years were in Scotland and I have tried numerous times to get these to my present practice unsuccessfully, so I’m a new customer it seems. Even on my NHS app, there is practically nothing, amazing.

Cheers Edz

Hello Edz

I hope you don't mind me jumping in here.

My Prostate decided to grow not only did it try and block my urethra, it tried to close my bladder off and kill me!! The answer to the problem a TURP operation, details of which can be found HERE. (full details of my journey can be found by clicking on my name or avatar).

I don't know if you are aware the NHS has a range of specialist services for veterans - again details can be found in THIS LINK.

I do hope this helps, if I can do anything else for you please do let me know.

Best wishes - Brian.

Thanks Brian,

I will be sure to check these out,

I wasn't sure if I could get a TURP, whilst under active surveillance?, will see how the next blood test goes in 3 months.

Cheers Eddie

Hello Eddie (Edz) 

I can't see any reason preventing you having a TURP. it's needed to improve your flow - and whilst they are doing it they check the "chips" for cancer. That's how I got my "upgrade" from a Gleason 7 to a Gleason 9. .

Best wishes - Brian.