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User
Posted 07 Nov 2018 at 23:37

I am 49 recently diagnosed with localis prostate cancer PSA 6.6 Gleason 4+3 T2c recommendation is surgery have option for radio therapy external beam so have requested to speak with oncologist really not wanting surgery though but feel am being pushed towards surgery as only option told about side affect of HT and will not be able to have surgery if radio therapy fails bit confused?

User
Posted 08 Nov 2018 at 18:25

Hi Bluevan

As others have already stated all radical treatments run the risk of side effects... 

You are young and fit..so whatever treatment you choose you have a chance of a very good recovery with minimal side effects.. 
Most medics would advise surgery for someone of your age and fitness level and with your clinical assessment ... for a number of reasons ...least of all with your life expectancy you have an option of salvage ( or adjunctive )  RT in the future if the Pca ever returned  ( but you should always choose the treatment that in you and the medics opinion gives you the best chance of a full cure first time! )   ..also with RT there is a small risk that it can cause other cancers later on in your life..

Clinical T2c staging is something to be taken seriously ..if you elect for surgery the histology result will give you a clear indication of where you are in terms of staging etc.. Sometimes ( not always )  pathological staging can differ from clinical staging because having the whole prostate and associated tissue to analyse will give the pathologists a much clearer view ...
With surgery you virtually get an instant result with regard if the cancer has been removed ..it's a simple PSA monitoring process to check how you're doing .. 
With RT it's not so clear cut ..and it will take a year or two to establish if your procedure was successful or not  ...if you can live with that..fine! 

I know this is sounding like I'm flogging surgery to you  ...but it's only my opinion ... If after all your clinical checks you are deemed suitable for surgery I would give it some serious thought... 
I had to make a similar choice nearly 4 and a half years ago  ...I'm quite a bit older than you..but I understand your concerns.. 

Best Wishes 
Luther


User
Posted 16 Nov 2018 at 19:29
I should have said if I had RT I could not then have surgery.
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User
Posted 08 Nov 2018 at 08:27
As a young guy you need to be aware of the long term effects of radiotherapy and balance these against the possible side effects of surgery.
User
Posted 08 Nov 2018 at 10:27
Plus the fact that you can follow surgery with RT + HT if it fails but cannot do the reverse
User
Posted 08 Nov 2018 at 11:20

Hi Blue,

At your staging of T2c there is every chance a prostatectomy may well cure you, although ‘cure’, as with any cancer, the unanswerable question is “How long till it comes back?” - maybe never.

Surgery also has side effects as well as HT/RT of course. If you go down that route try to find the most experienced high-volume surgeon you can to carry out the surgery.

You should order the very comprehensive and free “Toolkit” information folder from this website to help with your decision.

Cheers, John.

Prostate Cancer UK Toolkit Folder order form

Edited by member 08 Nov 2018 at 11:31  | Reason: Not specified

User
Posted 08 Nov 2018 at 16:19

I think given your age and T score surgery see sensible. Radiotherapy now would leave your body dealing with its effects for a long time (hopefully) and leave you more open to developing secondaries longer term. Also as PP says you can have salvage radiotherapy later if necessary. Having the prostate removed after radiotherapy is extremely challenging and with significantly higher side effects.

Good luck,

Ian

 

Ido4

User
Posted 08 Nov 2018 at 17:36

All have side affects reading about other treatments told internal seed not an option any one had cryo therapy or HIFU ? Terrified off surgery 

User
Posted 08 Nov 2018 at 18:25

Hi Bluevan

As others have already stated all radical treatments run the risk of side effects... 

You are young and fit..so whatever treatment you choose you have a chance of a very good recovery with minimal side effects.. 
Most medics would advise surgery for someone of your age and fitness level and with your clinical assessment ... for a number of reasons ...least of all with your life expectancy you have an option of salvage ( or adjunctive )  RT in the future if the Pca ever returned  ( but you should always choose the treatment that in you and the medics opinion gives you the best chance of a full cure first time! )   ..also with RT there is a small risk that it can cause other cancers later on in your life..

Clinical T2c staging is something to be taken seriously ..if you elect for surgery the histology result will give you a clear indication of where you are in terms of staging etc.. Sometimes ( not always )  pathological staging can differ from clinical staging because having the whole prostate and associated tissue to analyse will give the pathologists a much clearer view ...
With surgery you virtually get an instant result with regard if the cancer has been removed ..it's a simple PSA monitoring process to check how you're doing .. 
With RT it's not so clear cut ..and it will take a year or two to establish if your procedure was successful or not  ...if you can live with that..fine! 

I know this is sounding like I'm flogging surgery to you  ...but it's only my opinion ... If after all your clinical checks you are deemed suitable for surgery I would give it some serious thought... 
I had to make a similar choice nearly 4 and a half years ago  ...I'm quite a bit older than you..but I understand your concerns.. 

Best Wishes 
Luther


User
Posted 09 Nov 2018 at 21:24

With a T2C cancer, ie cancer in both lobes, you would not be the best candidate for HIFU which best deals with cancer in one lobe. It is still regarded as experimental in the UK and most of what is relatively small scale use relates to salvage treatment for failed RT and usually within a trial which was what happened in my case. I am due to have a postponed biopsy for possibly repeat HIFU or for Cryotherapy as it seems another tumour in my Prostate looks like it needs treating. Very few men in the UK have HIFU as a primary treatment and those that do invariably have this procedure privately. Cryotherapy is even more rare in the UK, especially as a primary treatment although I have met a man who had this done privately and we did have one member on this forum who also had this.

Edited by member 10 Nov 2018 at 18:03  | Reason: Not specified

Barry
User
Posted 09 Nov 2018 at 21:49

I was T2a (possible T3) Gleason 4+3.  Post op I was T2a Gleason 4+4.  Whether it was a better sample or had changed I don't know.  But the biopsy only found bad cells onr5% of one pin.  A doctor said to me having the op was a very good choice with that post op Gleason but he's the only one who came out on a side.

Your age is a factor for you.  For me going to sleep for 3hrs and wakening possibly cancer free sounded more attractive than hormones and radiotherapy and not knowing for months if it had worked.  You can read my profile and my referenced website if you want a fuller story.   All the best.

User
Posted 12 Nov 2018 at 14:03

I was apprehensive of surgery, I am 54 with clinical T2a. I had surgery 3 weeks ago, and although I still have some recovery to go, have no regrets. My father was clinical T2c in 2009, he also opted for surgery and is cancer free now.

User
Posted 12 Nov 2018 at 14:38
I too was very scared of surgery but in hindsight the fear was all in my head. You fall asleep, you wake up. You move on to dealing with the recuparation. The latter does involve some work as immediate issues are a catheter and usually gas swollen testicles but you deal with it. Longer term involves ED and continence rehab. Both just require hard work and persistence.

I was less scared about salvage RT but more uncertain and confused as it was not something I have banked on and had not my head around the idea as much. Again though, it was all in my head. You turn up, you take your enema, you pee and poo, you lay on the machine, big noisy machines wizz round you for a few minutes, you get up and go home. 7 weeks of this and you ring the bell to say "done". Owing in part to fact that it takes 7 weeks of daily trips to the hospital, the hormone treatment and post RT fatigue, in many ways the RT was harder. At least with the surgery the majority of the time I was affected, I was at home. That being said, I had no RT side effects (as yet) so cannot complain.

The bottom line though with both is that all my fears were groundless and reality was far more mundane and just hard work more than anything. Yes, there are risks but statistically you stand more chance of getting hit by a bus on the way to the hospital. The key thing is to research, talk to your medical staff, make sure they have the hands on hours, ask questions, gert as fit as you can, decide and then dive in.

Honest truth is that I would choose surgery as the intial treatment again because that meant I could have salvage RT / HT afterwards. Doing it the other way around is playing the game on "very hard" mode.

Good luck

PP

User
Posted 12 Nov 2018 at 18:27
Hi BlueVan

i agree with PP, very similar diagnosis with me, and aged 54, now 4 months in after surgery, 1 - 2 pads a day, (watch out for the alcohol intake!)

ED a work in progress! pump and tablets plus loving wife

What ever you decide, we are all here to help, any question, advice or support required.

Good luck

andy63

User
Posted 12 Nov 2018 at 21:38
One key point - once you make your choice ACCEPT AND EMBRACE IT.

Every choice has consequences and I have seen a couple of people on another site literally tear themselves apart because of "what if" and "greener grass after the fact" because they second guessed themselves afterwards.

User
Posted 12 Nov 2018 at 22:42

That's easy to say but not always easy to put into practice. John has at times bitterly regretted having the op and perhaps more than that, regrets not taking the uro's advice to go away for a holiday or just take some time to do normal happy things before the surgery. Common sense may say it is a waste of energy to regret your decisions but hindsight is a cruel bedfellow for a young man.

Edited by member 12 Nov 2018 at 22:42  | Reason: Not specified

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

User
Posted 14 Nov 2018 at 10:47
Hi Lynn

I should have phrased that better.

I agree - it is definitely not easy and certainly not a "I am going to think like this now" change but as a positive long term aim I think it is a very important one to consider. "What if" is a paralyzing mindset for many things in our life leading us to mentally live lives we never had (cue reference to the "Sliding Doors" movie) - this can make our feelings about our real life more negative.

I've done an awful lot of research over the last year and a half on the emotional side of this disease and learnt a lot not just from the clinical psychology side but also from philosphy (existential / stoic) and spiritual (bhuddist etc.) sources. The common denominator from all of these is that a mindful journey to accepting (and finding positives about) where you are right now and (ideally through whatever secular or faith mechanism you have) choosing the best path forward based on that is a very healthy option (I won't say *the* healthiest because that would be dogmatic and blinkered). Even more so, the end of life aspects of such an approach are very helpful with clinical study to back this up.

I am certainly not there yet because I worry too much about the future but the moments where I am accepting where I am and accepting that the future is an unknown are coming more often and it is this mindset that is mainly what is doing that.

The key thing is to accept it as a journey you want to go on and if needed get help to keep you on the path.

Cheers

P

User
Posted 16 Nov 2018 at 19:27

Hi Blue Van,

I had Da Vinci surgery on 10 September 2018 after being diagnosed Gleeson 9 (can't remember of it was 5+4 or 4+5) but was obviously very worried when told about how serious it was and my options (RT or Surgery).   The Hospital initially told me RT might be the best route but after I found out that RT involved surgery as they would insert radioactive seeds in me and that RT would go on for quite some time and could cause secondary cancers and that if I had RT I could then have surgery but I could have RT after surgery if needed that pretty much made my mind up for me.   Both the RT and Surgical consultants I spoke with just gave me the facts only, nether suggested one would be better than the other and both said "go with your gut feeling".   I went with my gut and had the surgery and whilst no one who has had it would say it's the easy option I am happy I went for that.   

Recovery varies for every individual, I have been fortunate that my incontinence is almost zero, just the occasional drip if I sneeze/cough.   Downside has been the constant urge to pee and not feeling like the bladder every really empties.   I have managed to stretch toilet visits from hourly to every 2 hours but when I need to go I really need to go.   The ED was fully explained and that I expect will be with me for sometime yet but otherwise I was back to work in a month and driving normally etc.

Sincerely

Pauly 

User
Posted 16 Nov 2018 at 19:29
I should have said if I had RT I could not then have surgery.
User
Posted 16 Nov 2018 at 20:23
Pauly, it sounds like they had offered you brachytherapy + radiotherapy rather than just plain old RT?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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