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Feedback on Treatments would be appreciated

User
Posted 01 Mar 2021 at 18:39

Very new to this online community forum, but was looking to receive a little feedback from those of you out there that have been diagnosed recently or years back.


Diagnosis last Thursday was T1C M0 N0 and a Gleeson score of 6. Understand what those mean now but considering different treatments have been somewhat overwhelming. I am a 52 year old who is fairly fit and considering going on Active surveillance for 3 months, have the psa test and then make a decision on either HIFU or removal. Can't see myself continuing on AS for a lengthy period knowing that there is something abnormal in my body.


I know it is my decision but would like to know any of you out there who have been through something similar.


Many thanks


Jon 

User
Posted 01 Mar 2021 at 19:41

Hi Jon, I barely feel qualified to speak, that is a very low level of cancer compared to most of us, but you are definitely in the right place for friendly advice. Most treatments for PC have side effects and though they are not unbearable they are best avoided. If you're lucky you may not get many side effects from whatever treatment you choose.


I would be tempted to stay on AS for as long as possible, and if hifu is offered probably go for that as it has the least side effects. Anecdotally a fair number of people who have hifu do get recurrence a few years later, so some may consider this a delaying tactic, which in my opinion is a good idea as putting off more radical treatment means putting of unpleasant side effects. 

Dave

User
Posted 01 Mar 2021 at 19:59

Hi Jon - first of all this is a great site with lots and lots of friendly people who have a great deal of knowledge about PC and I'm sure you will get lots of useful advice, maybe too much :) !!. I am in a pretty similar boat to you (age 53, diag with T2 N0, Gleason 3+4 I believe, early Nov 2020 - see my 'Advice Needed (again)' thread in the Diagnosis area. ). Also similar to you I have decided to try and tackle this soon, rather than go on AS for an extended period...I would just rather try and deal with it now whilst I'm relatively fit and healthy. Several options offered and, after lots of research etc etc etc, pretty convinced I will go down the Radiotherapy route, though yet to 100% confirm that ( I have, however, started the Hormone Therapy treatment...3 months in now....).


One thing people will undoubtedly recommend is ordering the 'Toolkit' via this site, this will give you a great deal of useful info about all the Treatments, Side Effects etc etc....I'm just working my way through it at present, and it really does seem to cover everything.


Good Luck and keep us informed ! Give us a shout if you need anything further specific info.


Regards,


Nick


 


 

User
Posted 02 Mar 2021 at 01:02

I have a friend who is G3+4=7 who has been on active surveillance for five years, living normally. He has annual MRI scans, consultations with his specialist and three monthly PSA tests.


Why not give it a go for a year?


I had surgery three years ago, and although I am cancer-free, I have total erectile dysfunction and ended up with a micro penis (which was more than adequate before the operation). I am completely continent, but the standard for ‘success’ of surgery is using one or less nappy pad a day.


Just telling you some things not often mentioned. I am quite happy, nevertheless.


Best of luck.


Cheers, John.

Edited by member 02 Mar 2021 at 08:39  | Reason: Not specified

User
Posted 02 Mar 2021 at 09:46

Many thanks Dave. Appreciate you taking the time to reply. Very best to you.

User
Posted 02 Mar 2021 at 09:47

Many thanks Nick. Appreciate you taking the time to respond. Very best to you.

User
Posted 02 Mar 2021 at 09:48

Thanks for the taking the time to respond john. Lots to consider. Very best to you.

User
Posted 02 Mar 2021 at 12:04
Jon, I went down the HT/RT route and found it entirely tolerable. Happy to answer any questions you may have about RT.

Best wishes,

Chris
User
Posted 02 Mar 2021 at 13:28

I was diagnosed T1A Gleeson 3+4 a few years ago now. I started on AS and stayed on it for over 2 years.


I was closely monitored and had a PSA check every 3 months. For me that gave me time to decide what option I'd go for if necessary and was happy with that route.


Staging went to T2 in the end and I elected for surgery. 3+3 gives you lots of options so personally I'd take your time 


Good luck

User
Posted 02 Mar 2021 at 14:06
Just a note to say that if you had what my insurer broker friend jokily calls ‘Clitoral Illness Insurance’ - you will know what he means - many insurance companies will not pay out on a G3+3=6 cancer diagnosis as they do not class it as ‘life threatening’!

Cheers, John.
User
Posted 02 Mar 2021 at 14:23

Jon


There are different types of PCa, some more aggressive than others and some spreading faster than others. AS can be a good approach for suitable men provided they are carefully monitored as this means they defer potential side effects of any treatment for a time or for the rest of there lives. Generally, if they live to normal lifespan, more men will have PCa than don't as the incidence increases with age. But most of these men will die of something else and not from PCa and many will never even know they had it. Although I have had two failed treatments, (3 if you count HT for a time), I have a very small tumour which may never need further treatment but if required I hope it will be by another dose of HIFU rather than suffer HT long term.


The Toolkit can be downloaded here or you can ask for a hard copy as it provides a lot of useful information on PCa and treatments. https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880


 

Edited by member 02 Mar 2021 at 14:26  | Reason: to highlight link

Barry
User
Posted 03 Mar 2021 at 12:16

My overall impression, of the 2 main treatments for PC, is as follows:


1. Radio & Hormone therapy. - If your Cancer is slow growing, I feel this is the best way to treat it. It does take quite a time, 2 years + for most. There seems less chance of Urine incontinence, with RT. With regards to ED problems, I'm getting back to my "Active" normal now (at 72) - following my own RT & HT treatment.


2. Removal of Prostate - there seems to be more likely to be Urine incontinence. It does get the job done pretty quickly, though I understand, for at least a month afterwards - things are pretty painful or uncomfortable. Sometimes, Radio therapy is needed to complete the job later. But removal, can be the best option for some. It was not for me, though.


But of course, cancers can be quite different & your Oncologist will be your best guide.

Edited by member 03 Mar 2021 at 12:19  | Reason: Not specified

User
Posted 03 Mar 2021 at 15:43

Wasn't suitable for me, but it sounds like HDR Brachytherapy might be for you. It appears to have a high success rate, is more targetted than normal RT and is also over quite quickly. Might be worth looking into.

User
Posted 03 Mar 2021 at 17:57

I started about where you are and have been on AS for about 6 years.  Now at 3+4 + 7 Gleason so feel I need to make  decision.  Looking at RT with a rectal spacer.  It's difficult to make a choice for treatment.  Recommend the Toolkit!  Best of luck

User
Posted 04 Mar 2021 at 10:24

Hi Jon, I am 57 yrs old and I was diagnosed Feb last year Gleason 3 + 4 and I was offered offered 3 treatments,


1. prostate removal.


2. external beam radiotherapy 


3. LDR Brachytherapy


like you are dining at the minute I joined this forum and after doing my research I decided. To go with LDR Brachytherapy and I am happy that that was the right decision for me. I have recorded my progress on the forum and here is the link


https://community.prostatecanceruk.org/posts/t24531-My-LDR-Permanent-Seed-Brachytherapy-Journey


if you have any questions don’t be afraid to ask and I mean you can ask anything.


Regards


David

 
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