Which treatment/Advice

Hi Jonboy656

So sorry to hear about your diagnosis, but you have come to the right place!!

Have a look at the documents/publications which PCUK have on offer via their "shop".  The Toolkit is a brilliant package which covers all aspects of early stages. Many of the booklets also contain good prompt questions for you to consider and ask your specialist.

In the meantime - try not to google, use trusted sources like this site, MacMillan or CRUK.  We all understand how your head will be in a whirl after the diagnosis but please feel assured that once a treatment pathway has been settled on you will feel much better about things!

Just click on our names or the roundel next to them to get at our personal stories.

Thank you so much 🙏

I was diagnosed in 2024 and had the operation in June 2024. My operation was via the NHS and I am now fully recovered and play table tennis once a week and green bowling twice a week at age of 66. The operation has left me with a weak right hip that does play up from time to time, and a bladder that will leak after lots of exercise or if I have a bad cold.

When I was first diagnosed, after MRI and Biopsy, I was a Gleason 3 + 4. As I also had a condition called Ulcerative Colitis, I had no choice but to have the operation. Post op they take the prostate and examine the tumour. After that I was a Gleason 4 + 4 as it had broken out of the prostate. So I think it was the right course of action. Two things from this, please make sure your team are aware of any other medical conditions you have as my team had not spotted my colitis and from that point I was on surgery only. Also I don't think the break out of the tumour would have been found any other way. I am not medically trained and maybe others will correct me, if I am wrong.

Other major concerns for the operation are that you may have some incontinence and the degree of this will depend on person to person. In my case it lasted 5 months and as stated it can be a minor problem even now, although the leak is never more than a dribble that is never visible, so far! As you are younger, I think you are more likely to recover quicker and may even avoid the incontinence.

The worst effect was that my operation was 'non-nerve sparing' and this means I am >95% certain to never have a natural erection again. You may want to ask if your operation would be 'nerve sparing'? If you are told it will be non-nerve sparing then you will be joining me. If it will be nerve sparing then you will have a much higher chance of recovering your erections, but there if likely to be a period of erectile dysfunction. It sounds horrific but together with my wonderful wife we have dealt with it and have found ways to make our love life amazing. If you look up some of my other posts you will find out how we have done that and that I needed some emotional support from the NHS, five months after the operation. I would strongly suggest that you discuss this with your GP and get a referral for Cognitive Behaviour Therapy.

I hope this has helped to inform you a little about the surgery route. There is a lot more and if you look around this site you will find out more of the other things that I haven't mentioned.

I so wish you all the best on whatever route you end up going down. Please keep posting on here as we all want to support you and cheer you on. Also don't be afraid to have a rant on here, it will help!

You say you've been diagnosed with Gleason 3+4 which is regarded as favourable intermediate because the majority is pattern 3 which is very slow growing (some experts now say it isn't actually cancer).

Do you have one tumour which is contained within the gland or more, how many cores were taken in the biopsy, how many contained cancer and how much percentage in each?  I ask because it's important to establish how much pattern 4 is contained in your cancer and I would suggest getting a second opinion on the pathology reading of the biopsy slides as I did privately with The Christie in Manchester.

At diagnosis my local hospital only offered a choice of 20 sessions of EBRT with many months of hormone therapy and radical prostectomy.

The reviewing pathologist at The Christie found that the pattern 4 content was "minimal", ie less than 5% and the MDT there said it was "best regarded" as Gleason 3+3 so I've been under active surveillance with no treatment for the past four years and annual MRI scans showing no change in the prostate (most recently down-graded to PI-RADS 2 from initially 3).

However, i appreciate you are much younger than I was (74) when diagnosed so the age difference could influence your decision to have treatment as it's fully understandable you may not like the thought of living with cancer for a long time, also active surveillance isn't for everyone.  But as others have rightly said there's no rush, so give it much consideration.  Hope that's helpful and with all best wishes, Julian

Hi,

The worst time is waiting for diagnosis.  Waiting for the bone scan result was the worst.  Then deciding treatment when you don't really know a lot and the doctors ask you to tell them.  I began to get excited when I chose surgery and got a date quicker than the surgeon had said.  Having the op seemed a relief but then you wait for the first psa test and those become a tense time as well.  With radiotherapy it takes a month of treatment and a couple of months before you settle down.  Overall though results aren't a lot different although people say radiotherapy is improving all the time and there are now stronger shorter doses which sound good.

Brachytherapy wasn't much heard of then and many people swear by it.  If you have any concerns about surgery or radiotherapy and if anyone said your lesion is near the edge they're factors that might help make up your mind.  Risk of effects on sexlife and incontinence put some off surgery but you can get those with radiotherapy as well.

There's a lot to take in.  All the best, Peter