HT/RT/Proctopathy Observations

Grade 2 is another way of writing G3+4.

No simple answer about what treatment is best, unfortunately. RT and RP have very similar long-term success rates. Basically a question of which set of side-effects you find least bad (there is no "good"). In my own case I didn't really have a choice: the MDT strongly recommended RT/HT, so that's the road I went down and didn't find it too bad at all in terms of side-effects.

Go with your gut feeling is really all that can be said.

Best wishes,

Chris

Edited by member 29 Jan 2021 at 22:52  | Reason: Not specified

Hi Nick,

Have you compared side effects ? 

Please view my profile. Includes both me and brother.

Was it your clear decision to move from AS or were you not on AS then ?    I'm unclear what other urinary issues you have been diagnosed previously.

Ie my brother had a TURP, although at 70 he was also offered surgery, chose RT.   

As you will appreciate, you balance risk etc and impact re. 'softer parameters, into the mix' If working full-time etc , access to hospital . Attitude post PSA tests. Current fitness and any other health conditions.   The obvious is you go with the option that gives you the optimum success at long term remission and only make that decision when you, and maybe partner need to make that decision.  Sounds simple eh? 

Regards Gordon

My mate with G3+4=7 has been on it for over five years, and is doing great.

Any kind of cancer treatment will change your life to a greater or lesser degree, and of course, hopefully prolong it!

Best of luck.

Cheers, John.

Many Thanks Chris; do you mind if I ask how old you were when you got your diagnosis please ? Cheers.

Many Thanks Gordon; yes, I have compared side effects which is one of the reasons I decided initially on the HT/RT path...I really don't like the thought of the invasive surgery/post surgery recovery  (especially now having read some of the threads on here, though some are more positive about it than others... I was just hoping to get away without it given my diagnosis.).

My urinary issue was diagnosed as an 'overactive bladder'; its not often I can go more than 2 hours without a visit; I have been taking tamsulosin for circa 4 years now; I also have issues starting sometimes i.e it can be 2 or 3 mins to kick off when getting the urge to go.

AS was offered but I really wanted to try and tackle the issue now, rather than having it hanging over me for x number of years, though I can completely understand why people choose the AS option ... its something I will discuss more with the specialist nurse i.d.c to weigh up the risks etc.

I will catch up with your profiles too.

Many Thanks for taking the time to reply! 

Cheers.

Hi John, many thanks for taking the time to reply ! Your advice has been noted ! I have started on the HT .... its the next step which is obvs crucial hence sounding out the Professionals :) 

I dont necessarily need to hurry to a conclusive decision just yet, just trying to get as much good advise as possible.

Can I ask how old your mate is please ?

Many Thanks again!

Nick

Hi nick

It's not common for the mdt team to make a strong recommendation. They will look at all the options, usually surgery, Ebrt, HDR, LDR, HT, chemo(for advanced) possibly HIFU and possibly other options depending on what the CCG will pay for. If several treatments would all give roughly the same chance of a good result they give the patient the  choice; quite often surgery or RT will be the choice. For some people such as me and probably Chris the mdt team just think that there is one best choice of treatment, so that would be a strong recommendation.

I am really glad I didn't have a choice, most of the threads on here are about making treatment choice. If they give you a choice then it means either treatment will give you roughly the same chance of survival, so start thinking about which side effects you don't want. 

Hi Nick,

Lots of useful information in the thread.

53 is a young age to have radiotherapy treatment when you have a choice, but not a reason to dismiss it.

If you go ahead with radiotherapy, ask about having SpaceOAR, to space your rectum away from the prostate, so rectum gets lower radiotherapy dose. It's rationed on the NHS, and you might be able try requesting it based on your young age, although I've no idea how likely that is to swing it. It will depend if that treatment centre fits SpaceOAR at all, and how many they have available. In the case of external beam radiotherapy, you can have it done somewhere else (privately), but in the case of brachytherapy, it's done during the procedure, can can sometimes be done privately even when the brachy procedure is on the NHS.

Something else you might be suitable for is HIFU - high intensity focused ultrasound. This is a focal treatment which targets just the area of the cancer. It can have fewer side effects. It doesn't always work, but can often be redone, or can be followed by prostatectomy (slightly more complicated) or radiotherapy. I tend to think of HIFU as a somewhere between Active Surveillance and Active Treatment, but it can work as a treatment in its own right. If it doesn't work and needs a followup treatment, there is a small risk of the cancer escaping before the follow-up treatment. Unless your centre offers HIFU, there's isn't going to be a HIFU consultant in your local MDT to suggest it. If it interests you, ask your urologist, but you would need a referral to a centre that does it - your GP can make the referral.

Wishing you all the best.

Nick, I was 55 when I was diagnosed. In my case the recommendation for RT was because the G3+4 found by the biopsy wasn't really consistent with my PSA of 31, so there was a concern about "micromets" - undetectable spread of cancer cells into the lymph nodes surrounding the prostate. My treatment was therefore "wide beam" RT which irradiated the whole pelvic region rather than just the prostate.

Best wishes,

Chris

Edited by member 31 Jan 2021 at 08:59  | Reason: Not specified

Thanks very much Audiman.......plenty of food for thought on the Posts received to date, all great stuff. Yes, its definitely a bit of a pain not being able to have F2F convo's at present which I would certainly would have much preferred with 'overdrive' head firmly in situ. Also, my 3 brothers all got checked out and one has a PSA of 5.5 ..... so he is off for a biopsy next week (like you say...a lot of men are probably walking round not knowing they have potentially got issues...or ignoring them)

Now I just need to compile that list of q's before I speak to the Nurse again...! At this moment in time I'm still thinking some kind of RT (with a SpaceOAR fitted !) is the right way to go for me ..... but maybe I don't need to kick on with it straight away.....to be discussed.

Many Thanks again and best of luck with the outcome of your PBR.

Nick

Hi all - quick update; from my PSA Test taken on 9th Feb .... my reading is down to 0.26 (from 4.3 - last PSA prior to HT start) ..... I think that's pretty good given I only started HT on 2nd Dec. Thanks again for all the updates in this convo to date, extremely useful and much appreciated !

Cheers,

Nick

Hi Dave - HT side effects to date (post 28 day bical tablets, 1 1 month Prostrap injection, 1 3 month Prostrap injection) :

Well publicised 'downstairs' changes! :)

Hot Flushes - pretty regular but tends to be 1 a day when they occur and they don't generally last long (more often at night)

Can't lift anything heavy for more than 20 secs without shoulder pain etc

A few general aches and pains in different places (they might just be old age!)

One thing I forgot, occasional itchy eyes, not had before so assume it's the HT? 

Other than that, nothing further untoward to date thankfully!

I'm trying to do as much walking as possible (minimum of 10-15 miles a week) to keep reasonably fit.

Thanks for posting and hope you are feeling good, no issues? :)

Cheers, Nick

Edited by member 07 Mar 2021 at 20:06  | Reason: Not specified

Chris

Cheers.

Thx lyn.. I realise its circa 18 months post RT till nadir is reached, just want this reading to be in line with whats expected :) best rgds!!

Ps you have taught me so much about PC over the last 12 months btw, so THANKS VERY MUCH!! 

Edited by member 04 Nov 2021 at 06:53  | Reason: Not specified

Cheers Barry. 

Cheers Dave, will give it a go! Yeah, definitely a miracle on the Lyn front 🤣 Many thanks to you both 👍

😆

The diagnosis of the cause of rectal bleeding is the responsibility of colorectal, not oncology.

When you had your sigmoidoscopy, did they mention haemorrhoids? You should go back to colorectal to check and advise.

Colorectal diagnosed radiation proctitis in me, but as it's minor, painless, and not causing any quality of life issues, it wasn't necessary to do anything about it. They did give me some steroid cream I can try if I want to. The important thing is to get colorectal to check it's nothing serious such as bowl cancer. My oncologist also told me to warn them not to biopsy any area of radiation proctitis just out of curiosity, only if they really think bowl cancer may be present too (biopsies of radiation proctitis often never heal).

Many Thanks!