Ok, so I'm now on the HT/RT pathway ...

Millibob said:

I know how you feel and yes some of us suffer from it - but - for me it's a minimal risk.

Thanks again Brian.

I think what I'm talking about here is not the risk, but what could be considered 'unnecessary risk', if alternatives that offer the exact same outcome but don't expose you to the same risks?

So let's just consider the concept of survival AND having a reasonable quality of life. We know surgery presents some immediate risks (from the surgery itself) and the known side effects (ED, incontinence) but I don't believe it bombards you with potentially DNA damaging X-Rays and so you aren't exposed to those additional risks, some of which could be long term.

So for me, knowing I would suffer from ED after surgery or even incontinence for a year, isn't the same 'unknown' as the possibility of suffering say bladder or bowel cancer because of how the treatment was applied.

Of course and depending on your personal situation, you may still be able to make an easy choice between the options because of other and more important factors, but I believe that for most people who have the choice of either treatment pathway with the exact same predicted lifespan outcomes and are young enough for the potential long term risks that can appear with RT (but not surgery) to make surgery the best first option, giving you that second bite of the cherry etc? I believe this is why you aren't typically offered surgery if you are above a certain age or aren't otherwise in good health?

I may have it all wrong of course! ;-(

Worriedwife said:

lets put this into perspective!

Oh yes please! ;-)

Worriedwife said:

You have balanced the known risks of surgery with the known risks of RT /HT and the known risks of ‘doing nothing’.

I have tried to yes, however, I believe you have possibly miss off the 'Potential risks' from treating something by bombarding it with X-Rays rather than cutting it out with a knife?

eg, With surgery we know there can be slips, mistakes or other complications but they typically show up at the time. With RT, we can damage the DNA of a cell that can then start to mutate, a cell, any cell that is in the pathway of the beam of X-Rays. The only way that could then be no higher a risk than say surgery is if they also bombarded you with X-Rays during that. Have any diagnostic treatment involving X-Ray imaging and they will generally hand you a disclaimer, stating the risks involved and that's generally a much lower level of exposure compared to RT (that is actually intentionally trying to kill cancer cells). It's also why all workers working around X-Ray equipment carry a badge and if they are exposed to a certain dose, they have to do something else.

It's like using shot blasting versus a wire brush to remove paint, both can do the job but shot blasting is more likely to find and expose holes or weaknesses in the structure.

Please don't apologise for being a deep thinker. Whilst I sometimes see it as a curse, it has also allowed me to make a good living in '(IT) support' roles and also saved me from wasting my hard earned or taking (what turned out with some extra thought) unnecessary risks.

Worriedwife said:

Worrying about the future is a waste of energy because what you worry about might not happen.

Yes, of course, but I'm not worried about the unknown unknowns, I'm just trying to take into account the known unknowns, those things we are formally warned of, the 'You may suffer from' (because of the treatment type), etc not the thought of having a heart attack or being hit by a bus ... because 'Forewarned is forearmed' and is a logical / sensible thing to consider (to me anyway)?

'Fools rush in' etc?

And I think we do often need to consider the past and that's the point of medical trial results. ;-)

I envy you having the tangible support of your partner though, as I used to before her dementia. If it wasn't for the support I enjoy here and from some friends and family I would feel very much more alone.

At the end of the day,I believe both methods have greatly improved over time.A surgeons knife has been replaced by the robotic method,although still guided by the surgeon.Shotblasting has now been replaced by a more accurate fine shot. 7 weeks of RT,down to 20 days.20 days soon down to 5. Whichever method chosen ,your probably only as good as your surgeon or radiotherapist!

Hi 10Up, good points.

10Up said:

Whichever method chosen ,your probably only as good as your surgeon or radiotherapist!

Oh don't add another variable I'll try to factor in! ;-)

That said, I have read of people checking on the number of prostate operations a surgeon has under their belt and opting for one with greater experience etc. So again, whilst we know there are risks, I think most of us try to minimise them as much as possible?

When the Mrs had her second full knee replacement op the person actually doing it was a trainee of some sort but there was also a experienced / qualified person there guiding them!

So given the chances they wouldn't let a complete noob lose on such a thing, you could look upon it as having two heads for the price of one. ;-)

I drove to all my RT appointments about an hour's drive from the Cancer Charity Centre that put us up for the 4 weeks of my RT and also drive 2.5 hours home and back at the weekend no problems.  My wife was able to be with me and wait for me in the waiting room but not in with me whilst having the RT.  I also continued to work out at the gym during all my treatment.  Everyone is different and some people even continued to work all the way through their RT and were offered their RT in the evenings - The Cancer Centre I attended were giving RT at least up until 9pm though I don't suppose all Cancer Centres do.  I would imagine that whilst you are in the RT treatment room it would be better if you could have someone sit with your wife in the waiting room.  the treatment probably lasts minutes but you can be in the room for up to quarter of an hour getting everything sorted.  Do you have someone who could come with you and be with your wife in the waiting room?  Also I would ask at the hospital if there is any provision or from any Cancer Charities working with the hospital too.  If there is a Maggie's Centre or MacMillan  Centre there they will be able to provide you with information about any help you may be able to access to help you and your wife through this. 

All the best.

If you wish to watch a video on the side effects of Radiotherapy, then I found the royalmarsden.nhs.uk video useful.Just google it and there it is. Had my meeting with the Radiotherapy dept yesterday,to fill in the consent forms.

Hi 10Up and thanks for the reference to the videos. Are they these here?

I'm still very much undecided re which pathway to go (even though I've started HT because I felt I should be doing something etc).

May I recap some things I believe I have learned along the way ...

It's 'easier' to have RT as secondary treatment to surgery than the other way round. The reason is that pre RT the prostate is a fairly predictable and defined organ, not so after being hit with X-Rays sufficiently powerful to 'kill' the cancer. Because surgery is generally restricted to the prostate and it's only cut with a knife rather than being bombarded with X-Rays (through the body), surgery may not require any follow up treatment at all.

If the surgery removes all the erectile nerves, you are unlikely to be able to have an erection without some further treatment.

After surgery you are likely to suffer some level of incontinence (that could endure for some time) and will be under restricted physical activity for ~6 weeks.

To have the std RT you will likely to need many weekday visits over several weeks and the HT may impact your libido for some time?

So the issue for me is separating the 'you may' from the 'you will' and the consideration of the impact the 'you will' might have on me.

When I was first being pushed to make the choice I was sufficiently down that I wasn't really bothered about the future but still made the decision of surgery as that made logical sense at least. Then the realism of SURGERY hit me, along with the extent of the down time  and thought of living with long term incontinence (even over ED) and I flopped back (no pun intended) to RT.

Now, in a slightly better mental state and with the hope that I might have as long a future as possible (at least whilst I remain reasonably active / function / coherent) and whilst trying to ignore the surgery bit (I'll be asleep once I get that far) and the idea that the next few days (pain / discomfort), 14 days (catheter), 6 weeks (restricted movement), months (incontinence) will be forgotten in the future.

But ignoring the value of the second bite of the cherry by going for surgery, most of the rest is like trying to compare apples with oranges, if the longest (best for you) life is paramount?

In a way I really wish I wasn't given the choice, if straight medical science determined what was the 'best solution' for me and survival and then my only decision was if I was going to have it or not.

I really with I was wired as many others are when I could just pick something that justifies a decision and go with it. ;-(

Apparently I'm going to get a call from Urology this afternoon so I'll see if they can shed any better light on all of it for ME.

Yes those are the videos.Surgery or RT,I had to make the same choice,its a difficult one,unusual that the Drs cant make it for you.Problem is that everybody may react to the surgery or RT in different ways.I confirmed yesterday that RT was my choice. Success rates are very similar ,according to the figures that was produced yesterday. I was eventually partially swung by an old friend who went for surgery and still has incontinence after a couple of years,but,thats not to say I would get it.Rt can also produce it ,figures say more likely with surgery.The 6 weeks and 2 with catheter,didnt enthuse me either.But once again RT isnt without potential problems.If you go for RT and it fails you are very unlikely to be offered surgery afterwards. Age also persuaded me to RT,as alot of the problems appear to come a few years later,where as with surgery Im led to believe are just after.Its a minefield.Im no expert! knew very little about the subject until diagnosed.Whatever you choose,Good Luck,dont regret and try to move on.

That's a good summary 10up.

One other thing, although it's always mentioned very difficult to do surgery after RT (but not totally impossible) if u do have surgery and then possibly RT potentially u could have extra side effects because of 2 treatments.

Good luck

Steve 

Grundo said:

That's a good summary 10up.

It was indeed. Thanks guys. ;-)