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Advice needed (again) !

User
Posted 29 Jan 2021 at 20:03

Hi all - first day on this site today and the forums have been an eye opener to say the least. :)

I was diagnosed in Nov 2020, T2 N0, small prostate 23ml

Grade 2 adenocarcinoma 30% of area sampled

Right sided samples normal, left sided sample small focus of 12% Grade 2

Confined to Prostate / low grade / slow growing

PSA fluctuating between 3.5 and 4.5 (another PSA booked soon...)

Urinary issues which have been ongoing for a number of years (circa 2 visits to loo overnight).

Age: 53

Cant find a dreaded Gleason Score anywhere in my documentation!

After doing my "homework" and my first consultation I had initially decided on the HT/RT route which seemed the most appropriate/best option for me (espec given my urinary issues)...Consultant did not disagree or warn me off the chosen path, stating that all the treatments should be equally effective, but any surgery (if needed) very difficult post RT.

So, started HT in Dec 2020 and have had the tablets and first two Prostrap Injections (1 1 month, 1 3 month - no major side effects to date)

Then...had my phone mtg with the RT Consultant....just didnt get a warm feeling at all from him, subsequent letter was basically 2 sheets of paper listing all the many side effects....so this has very much made me rethink my situation! Had a chat with a specialist nurse today which was reassuring and she directed me here.... :). As per the norm, no one has really told me what they think the best path would be to take for my diagnosis, and lots of people here in both camps HT/RT v RP having read some of the threads!. I was obvs offered AS, but just wanted to try and d/w it now rather than in a few years time and whilst it was contained in the prostate. 

So, the question is, given my details above....would HT/RT vice Surgery be a reasonable path to take to try and cure or, at 53, would it potentially lead to more problems further down the line ? 

Many Thanks in advance for any posts :)

Cheers!

Nick

 

 

 

 

User
Posted 29 Jan 2021 at 22:52

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

User
Posted 29 Jan 2021 at 23:01

Like Chris, the mdt team had a strong recommendation for me of HT/RT with a bit of brachy as well. I was 53 at diagnosis too. 

This thread https://community.prostatecanceruk.org/posts/t26986-Can-t-understand-why-anyone-would-choose-surgery-over-Brachytherapy--I-must-be-missing-something

Has had some pretty good comments. 

Dave

User
Posted 29 Jan 2021 at 23:37

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

 

 

 

 

 

 

User
Posted 30 Jan 2021 at 00:43
To be honest, I wouldn't care about the oncologist's personality as much as whether he is good at what he does. Is he long-standing? Was it the consultant you spoke to rather than a registrar? How long did he say you would be on the hormones after the RT finishes? Did he (or his letter) give any kind of % likelihood of achieving full remission?

If the surgeon was ambivalent I would be tempted to stick to the path you had already settled on - perhaps the onco hates remote appointments? I have difficult conversations with people most days and it is so hard right now to do that effectively when we are not in the same room.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jan 2021 at 04:41
If I were you, given your low PSA and having been offered the option of AS, I would give it a go for a year, with three-monthly PSA tests and an Mp-MRI at the end of it.

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.

User
Posted 30 Jan 2021 at 09:07
Just to add the purpose of active surveillance is to avoid unnecessary radical treatment while seeking to ensure if required it happens in a timely manner, certainly BEFORE it leaves the prostate.

You are young and the cancer is contained RT is not normally the preferred path in this grade group.

User
Posted 30 Jan 2021 at 18:54

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

User
Posted 30 Jan 2021 at 18:57

Many Thanks Dave; I will take a look at that thread....should my MDT Team have made a recommendation for me then , is that standard procedure or ? Cheers again!

User
Posted 30 Jan 2021 at 19:06

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.

 

 

 

 

User
Posted 30 Jan 2021 at 19:18

Hi Lyn, Many Thanks for taking the time to reply, I can see your very popular in these parts, its much appreciated :) 

I spoke to the Consultant Clinical Oncologist ref RT (initial chat was with the Consultant Urological Consultant where I decided on HT/RT having covered off the surgical options and AS)

I think being on HT for circa 2 or 3 years (depending on progress was mentioned) - its not on any of the letters I have received to date, neither  is the % chance of achieving full remission ( and I cant recall that being mentioned in any convo to date ) but I will check that with the specialist nurse. Would it be standard to be told the % chance of full remission based on your diagnosis ?

Many Thanks again!

Nick

 

 

User
Posted 30 Jan 2021 at 19:22

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

User
Posted 30 Jan 2021 at 19:27

Hi 'francij1' - Many Thanks for your response; its interesting you say RT is not the normal path for my grade....as no consultant has indicated that to me to date, and it was in the range of treatments offered via my initial chat with the Urological Consultant. I was also offered AS but just really wanted to try and tackle it here and now, rather than having it hanging over me....its a discussion I need to have with the specialist nurse by the sounds of it.

Thanks again!

Nick

User
Posted 30 Jan 2021 at 20:42

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. 

Dave

User
Posted 30 Jan 2021 at 22:13
I think it is true that in years gone by, younger men were pointed towards surgery and older men were pointed towards RT. I don't think it is that straightforward these days, and it has been said by some experts that future generations will be appalled and fascinated that prostates were ever surgically removed!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jan 2021 at 22:31

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.

User
Posted 30 Jan 2021 at 22:45

Hi Andy, many thanks for the chat tonight, sorry if I kept you longer than expected :) but lots of very useful information discussed, and thanks for posting this above. 

I have now filled in the 'join us' form on the FOPS website....check the black hole :)

Many Thanks Again !

Nick

 

 

Edited by member 30 Jan 2021 at 22:49  | Reason: Not specified

User
Posted 31 Jan 2021 at 08:53

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

User
Posted 31 Jan 2021 at 09:49

Hi Nick,

Like lots of others that end off here when you're told you have prostate cancer you head just goes into overdrive.    My experience is not too different to yours and I fully trusted the health professionals and went for AS.  I never had any symptons that anything was ever wrong and hardly ever got up during the night to use the bathroom.   I was checked every 3 months with a PSA test at my GP's and followed up each year with the consultant.   

 

Now move on 5 years and things have got to a stage when I was advised that medical intervention was required and then my nightmare began trying to work through the best option of which everything seemed to be a problem.   After a very long conversation with an oncologists I was convinced that RT was the route and at first he told me that I would be a perfect candidate for Stereotactic RT which seemed to be a very short course of RT and there was no HT recomended.    I had a list a mile long of questions when I went for the appointment which was face to face as there was no way I could have achieved what I needed in a conversation over the phone.    I ended off choosing Proton Beam Radiotherapy and also had the spaceOar fitted.    This treatment was 7 fractions every other day and at this point I'm at treatment 6 with the final one tomorrow and from that they are 95% certain that all is cured but of course I will still be checked.   I have in the end gone private and I don't think Proton Beam is available on the NHS but don't quote me on that one.  I've also read that proton beam will replace surgery in years to come as its equally as effective and causes less side effects, however this will only be when costs come down I'm sure.     Its still early days for me to see what side effects from this I will have but so far I feel fine with just a bit of discomfort passing water which once they stop the therapy I'm told will go away.   The treatment itself has had me totally fascinated at the precision the radiographers are able to work to and the process has not been a bad experience in any form whatsoever.

 

Good luck with whatever you choose but I personally wouldn't rush into anything, I always remember at my first diagnosis being told there are lots of men all walking around like me that have no idea anything is wrong and for some this will never advance to a state to cause any problems.  I was told that it was the consultants opinion in the next 5 years I had a 30% chance of medical intervention and 50% in 10 years.   One thing for sure is that we are all different and I was asked if the thought of Cancer really bothered me but I am the sort of person that never worries about what MIGHT happen and I just cross all of the bridges as I come to them, so if the professional opinion was it was OK to just wait and see what and if anything developed further then that was good enough to me.

Possibly like most of us its the side effects that really worry you and at 53 your still a young man, in my head I think I'm still between 26-30 lol sadly not in body though.

 

Take care and good luck

 

User
Posted 01 Feb 2021 at 09:20

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

User
Posted 04 Feb 2021 at 15:07

Very interesting FOPS meeting last night (Many Thanks Andy62!!) Much more food for thought.....maybe think more about the RP option... I'm in the 50/50 camp RP vs RT now..... :)

User
Posted 03 Mar 2021 at 18:52

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

User
Posted 03 Mar 2021 at 19:17

Good result Nick. Is the HT giving you any problems? I didn't have many side effects. 

Dave

User
Posted 04 Mar 2021 at 08:59

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

User
Posted 16 Apr 2021 at 11:42
Update : Meeting with Oncologist yesterday (he was in a much better place than the first convo I had with him which kicked off this thread !); agreed RT as my treatment of choice (having done plenty of homework on here, via Toolkit etc etc); need to get urinary system optimised first though so will be seeing the urologist again in next 4-6 weeks and will start making some recommended changes to my fluid intake starting from Monday (minimum of 2 litres of water/squash per day, drop number of caffeinated drinks consumed), plus making a start on the PFEs hopefully. As well as continuing with Tamsulosin I've started taking Solifenacin (5 mg) tablets once per day (as recomm by Urologist). Will be staying on HT for a minimum of 12 months post RT.

Many Thanks for all the msgs, they have been a great help ..... and to 'Cheshire Chris' and 'Hermit of Eyam' in particular for some additional detailed RT observations via PMs.

User
Posted 16 Apr 2021 at 13:33
Great stuff. Hope it all goes well for you!

Chris

User
Posted 11 Oct 2021 at 12:40

I completed my Radiotherapy last week (20 x 3gy) and have updated my Profile with a few observations....which I will continue to do through the peak 'side effects' month as required. All in all I've not had too much trouble to date, fingers xd that continues!

If anyone has any specific q's feel free to ask.

Cheers,

Nick

Edited by member 13 Oct 2021 at 19:44  | Reason: Additional info

User
Posted 03 Nov 2021 at 23:28
Profile updated with latest post-RT observations; next PSA test booked for 19th Nov (just over 6 weeks since RT completion); post RT follow up appt with Onco 30th Nov (D Day!)

Cheers.

User
Posted 04 Nov 2021 at 00:38
Good luck with the PSA test but don't set your expectations too high.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Nov 2021 at 06:32

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

User
Posted 30 Nov 2021 at 13:18

Meeting with Oncologist today; PSA <0.03 - in line with expectations :) ; tests to continue quarterly for first year post RT. HT reqts to be reviewed in 12 months. Early days but a promising starting point...

Cheers.

Edited by member 30 Nov 2021 at 15:22  | Reason: Additional info

User
Posted 13 Apr 2022 at 09:30
Phone call with Oncologist 11/04/22...PSA from Feb Test <0.03. Expect a F2F meeting in July with a further PSA test done beforehand. RT Side Effects update will be in Profile shortly. Cheers.
 
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