Recently diagnosed 30/09/2024

Hi AB

Sorry to hear your diagnosis.

For me it was about going for the easiest option which I decided was Radiotherapy in 2017.

All went well with no major side effects.

I can see only one downside to Radiotherapy and that is what u have mentioned.

Surgery very difficult if not impossible after RT.

But I took the gamble and so far ok.

See what others say and at least time on your side which is always helpful.

Best wishes 

Steve 

Good evening Andybeagle

welcome to our forum, sorry you’ve had to find your way here but welcome nonetheless 

I had my op on July 5th this year and apart from a small bit of incontinence and ED I was back at work 6 weeks later & declared cancer free a fortnight ago.

i started off with Gleeson 7 (3+4) with 12 from 12 samples from the right side of my prostate cancerous and 3 from 6 on my left. On the back of that I was offered the op or hormone & radiotherapy over 18 months, and like you said, if it’s still there you can’t choose to have an operation next.

For me, I found I had a suspected issue in February, confirmed in April, removed in July, post op PSA test & declared cancer free in September so all done and dusted in 7 months. No brainer for me, if I had to have my life again & again, I’d be on that operating table like a shot, not everyone, I get that, but it was for me

best of luck 

John

Hi Andybeagle,

Sorry you have had to join this forum because of a cancer diagnosis, but in the circumstances it is THE place to be & you will find plenty of friendly advice from wonderful people to help you on your treatment journey.

I was 67, fit & healthy when I was diagnosed last year as Gleason 7 (4+3) T2a No Mo & although initially interested in AS was advised that it would not be in my best interests so was left with a choice of surgery or HT.  I was never enamoured with the thought of surgery (being a wimp) & the thought of a catheter / incontinence issues, so after lots of research opted for HT/RT with the aim of a cure.  What helped swing it was that I was only going to be on HT for 9 months, so although there were some side effects to cope with (nothing too bad) it wasn't for too long a period & after the HT finally left the system they slowly cleared up.

You mention that there's a chance of the cancer returning after HT/RT, but that is a possibility with surgery as well, & whilst it's true that surgery isn't usually possible after HT/RT (not impossible), there are lots of other treatment options available should the need arise.  It's the $64000 question as to which treatment to choose, & this will differ for every individual.  The best thing I can suggest is to do your own research (including reading profiles on here), using reliable sites such as Prostate Cancer UK, Cancer Research UK (but not Doctor Google) & make a list of what's important to you & your own individual circumstances.  If it helps, you can read my profile by clicking on my coffee cup picture next to my name.

I'm sure you will get plenty of other replies to help support you, & if you have any questions ask away on here - there is no such thing as a silly question.

Best Wishes

Brian

The key points in your diagnosis are Gleason 6, T2a.  Think of the “cancer” as a wart growing inside your prostate gland (tightly packed cells, going nowhere at the moment). Personally, I would look closely at focal treatment to maintain quality of life and, obviously, would be monitored thereafter.  This means that more radical treatments (and side effects) are still in the armoury waiting to be used if required.  You are definitely safer than “the untested man in the street” and you have time to make your decision.  Don’t rush into anything without full research (I find this site and PCUK the best) to look at the experiences of other men.     AW

Good Morning Andy B24 

A warm welcome to the Macmillan Online Community - I am so sorry to find you here but it's a great place for help and advice.

You have already had some great replies from Community members who have "been there - done that" so all I will say is I replied to almost the same question as yours in another thread last week and here's a link to that thread and my reply-

 Recently diagnosed prostate cancer Gleason 7 

At the end of the day it's a very personal choice. Ask any questions you want, we are all happy to answer them.

Best wishes - Brian.

Hi Andy B24

It seems that you’ve got many good advices. All prostate cancer treatments comes with a risk of side effects; short term and long term and also with the possibility of recurrence.

With that said, you seem to have a low risk PC and a localized one so you have a lot treatment options with curable intent.

One thing to remember as well; radiation therapy in your case can come with lots of ’flavors’ and with your diagnos I would guess a hormone therapy for you would be really short term.

But lots of things to take into consideration and you’ve really come to the right community with lots of fantastic members here to help you out 

Best wishes - Ulf

Hi,

A few things that I’m not clear on.

1) Why, if you have surgery to remove the prostate when the cancer is very localised is there a chance it could return i.e. when all prostate tissue has been removed.

2) The PCUK booklet ‘A Guide If You Have Just Been Diagnosed’ does not give surgery as a possible follow up (salvage) option if you first have HIFU. Is this the case? What is the NHS take on this?

3) Why is the Consultant/MDT also saying HT as  well as RT as a possible treatment option? I don’t fancy some of the HT side effects.

4) Are the ED and incontinence side effects much less (if at all?) with the HT/RT treatment option?

Thank you

Hi Andy B24 !

Sorry I missed out on the other questions.

First of all, if you see my profile I’m not from UK and don’t have a good answer why NHS say they don’t do salvage prostatectomy after HIFU. I would say that for specially selected persons it’s possible to do salvage prostatectomy even after HIFU. But, I don’t know if this is the case in UK and if not you may probably need to go abroad to perhaps have it done.

Because if you choose the radiation path for treatment then even with your low gleason, your low T2 diagnos some HT short term together with radiation have very gord synergy together.

ED and incontinence. Not knowing the real statistics I think Incontinence is almost off the table when having HT / RT compared to RP. Urinary problems, short term and long term might happen but I think statistically incontinence is more a RP side effect. ED i would say like this. Directly after surgery it’s 100 % but generally it improves a lot over time with no or minimal ED depending on if you’ve had nerve sparing. With radiation, directly after you normally have no or limited ED but longterm you can develop ED yes.

I think the key here is; age, ED or not before treatment, how well you take care of yourself and Penile rehab after treatment is the success story for any treatment you decide.

Hopefully you get more answer from all the good members in here 

Besr wishes - Ulf

Hi Andy

1 surgery difficult after hi Fu and RT but more so after RT. Think u would need someone with vast experience if it was possible with either.

2 as above but cos NHS don't offer much  Hi Fu they probably don't want to get involved in surgery after.

3 RT is possible on its own if low stats but they do seem to want to give both but if stats low then HT poss for only , 6 months

4 There do seem to be more issues with ED and urinary probs after surgery but doesn't affect everyone.

Best wishes 

Steve 

Hello Andy (Andy B24) 

In answer to your questions above:

1. Even if the cancer is "localised" and they take the prostate and prostate bed with clear margins - it's possible there was a spread before removal or even during removal. Nothing is 100%.

2. HIFU isn't available on the NHS apart from under a clinical trial. I would think that surgery would be out of the question after HIFU but that's only a personal opinion.

3. HT is the normal these days along with RT. i think it's a "belt and braces approach. Hit it now - hit it hard.

4. ED and incontinence affects us all differently. Some people go through surgery without any effects, others take ages to recover. HT/RT we don't all get the side effects but they take some while to get out of your system.

I hope the above helps.

Best wishes - Brian.