Confusion about posts

User

Posted 10 Sep 2018 at 14:54

I read as a reply that only Radical prostatectomy surgery is given to people who are expected to survive 10+ years.
I have locally advanced prostate cancer (not in bones or lymph nodes) but just outside the prostate.

I was told I couldn't have the surgery (radical prostatectomy) as it had spread and would need radiotherapy there anyway.

I had 7.5 weeks of radiotherapy. But now I keep reading conflicting information. By not giving me the surgery are they saying I won't last 10 years!

I've been told my prostate has been totally destroyed by the radiotherapy and am on a testerone stopping hormone injection every three months, the intention being a "cure" (but from what I read cured is 5 years or 10 years) so would I have had a better chance having the prostate removed (I know it's too late now).

The likely results for different types of treatment put radiotherapy and radical prostatectomy pretty much on a par which is why I didn't argue about my treatment proposal.

Even on this site the answers seem to conflict. Before I get the response "everyone's cancer is different", I know it is but then I see generalised statements which could possibly be incorrect.

As I say I'm really confused and inside I'm a mess. I shouldn't really be writing this as I now what the replies will be as I've read so much but I feel very frail inside. As far as work is concerned I'm cured end of! If I mention to my wife she says "what do you think"? She is supportive but is from the other side of the fence. My GP just tells me to cut out carbs to lose 10kg, not interested the hormone injection can make me insulin intolerant and gain weight even though I have managed to lose 7kg so far. He's also not interested I am peeing fire all the time though I have had a test for cystitis by infection. Where I should be feeling good my life is still on hold as I wait for the next problem. Bleeding from the rectum is about due though again I know even that is not certain to happen.

On a lighter note can I praise McMillan, for me they have been life savers literally! Good luck everyone John

User

Posted 10 Sep 2018 at 16:07

John, whether surgery or RT is recommended has nothing whatsoever to do with how long you're expected to live, but with which treatment is the more likely to get all the cancer. A man whose cancer is not entirely contained within the prostate is very unlikely to be offered surgery because there's too high a chance of the surgery not getting all the cancer, whereas RT can treat a larger area and hence is more likely to result in successful eradication.

Hope that's of some help to you,

Chris

User

Posted 10 Sep 2018 at 16:11

Hi John,

I had a similar diagnosis to yourself and had the HT/RT combination. Click on my avatar to see my profile.

Arthur

User

Posted 10 Sep 2018 at 17:45

Hi Cheshire Chris and Arthur.

That was my understanding but then I literally stumble on comments on here that leave me doubting.

I think I'm just in a downer mood today, feeling pretty low.

But you have cheered me enough to give myself a kick and yes that's my way of looking at things at the beginning.

Regards

John

P>S> Just off to look at Arthur's post. Says my picture isn't an image.... :)

User

Posted 10 Sep 2018 at 17:49

Hi John

I am also on the HT/RT treatment plan, I was told that surgery was not recommended with 80% cancer contained within the prostate.

I start my radiotherapy this week, I have to trust my consultant having looked a MRI and CT scans that this is the right plan.

Phil

User

Posted 10 Sep 2018 at 17:55

you might be confusing normal life expectancy and life expectancy with PCa. Generally if a 75 year old man presents with any stage of PCa then the surgeon might reasonably conclude that surgery would be less well tolerated and introduce risks that should not be endured by someone within 10 years (or so) of average mortality age.

Fitness levels, weight etc are also considered. I was completely unaware that RALP surgery for instance is performed on a 30 degree decline so blood flow and other factors are also considered. It’s not as clean cut as you think.

Fresh

Edited by member 10 Sep 2018 at 17:55 | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 10 Sep 2018 at 19:53

Hi John, What Fresh says above is what I've read. They tend not to offer surgery to people over 75 mainly because they're less capable of withstanding the operation.

Radiotherapy should be better if you've got local spread and I also read that results are pretty similar to surgery. Losing 7kg is an amazing achievement. Does the Macmillan nurse have anything to say about you peeing fire, I found them easy to contact and willing to explain. Regards Peter

User

Posted 10 Sep 2018 at 23:53

Ok let's be clear RT and surgery have similar PC specific outcomes for stages that are ethically treatable by surgery OR RT. Apart from the comorbidity issues already mentioned surgery has advantages for younger men who might be young enough to experience delayed side effects from RT.
So younger blokes tend to go down the surgery route older blokes tend to get RT. But it's a crap choice really! More ED right away with surgery that may improve or less ED with RT that may get worse...

User

Posted 11 Sep 2018 at 00:13

Hi John,

The important words are those given in your second paragraph. You were in a similar position to me insofar as I was told by a surgeon representing the opinion of the MDT that he doubted he could remove all my cancer and recommended I have RT. Had I have had surgery instead, it is highly likely that it would have had to be followed RT with combined side effects of both treatments.

It is true that the cancer again appeared in my Prostate and was treated with HIFU. However, there is still some cancer within my Prostate and I hope to learn tomorrow whether it is considered of sufficient significance to warrant further focal therapy.

I did ask whether age would be a consideration and was assured it would not be provided I was passed all the pre op tests that even much younger men are subjected to.

I expect most of us have thought at some point that we might have done better with different treatment but mostly we won't know. Maybe there are a few exceptions such as when for example men who could have had RT chose surgery and were permanently incontinent. Best to just think we made what seemed to be the best choice at the time, accept we can't change our choice now and to deal with whatever this disease throws at us.

Barry

User

Posted 11 Sep 2018 at 10:03

Hi everyone and thanks for your replies.

I am 65 now so not over 75 :)
I am very fit and active (currently 12th in a nationwide calorie killer challenge of 326 others of all ages).
I was concerned that in other posts members were given a radical prostatectomy and radiotherapy for a similar scenario and it was also mentioned they only removed prostates if you were of an age to survive ten years or more.
So I have decided to ignore those posts in my mind having be reassured by your replies and just accept they are others opinions and circumstances not relative to me.

I think I am just sort of bouncing back with worry as my next PSA test is due this Friday and I think too much.
I don't have a McMillan nurse but did a "Next steps" course with a councillor and dietician who when I mentioned about peeing fire could only suggest I see my Dr. When it wasn't an infection he lost interest. Radiotherapy cystitis is common and usually (not always) goes within two weeks to two years and in extreme cases a bladder wash treatment is used to soothe the bladder. Depending on where the radiotherapy zapped I expect some problems.
However, whilst I have that problem and ED, probably a result of the hormone therapy I don't seem to have other physical problems. Obviously my head isn't 100% but I don't think that will ever be 100% again and hope through time I will lose the black cloud and think more positively. I can only hope.

Thanks again for all your replies, good luck to everyone. John

User

Posted 11 Sep 2018 at 16:07

John, are you drinking cranberry juice regularly to soothe your bladder lining? And have you stuck with decaffeinated drinks or has the caffeine crept back in? John found after his RT that normal tea and coffee was an irritant so he has stayed with decaffeinated ever since.

If there is a continence clinic in your area and they deal with radiation cystitis, you could ask for a referral?

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

User

Posted 11 Sep 2018 at 17:03

Originally Posted by: Online Community Member

I was completely unaware that RALP surgery for instance is performed on a 30 degree decline so blood flow and other factors are also considered. It’s not as clean cut as you think.

Fresh

I was too, and I couldn't understand why blokes on here were complaining of shoulder pain after RP. I thought the roots of the prostate can‘t reach all that way to the neck!

I get p****d off when I am hung up by the feet like a bat at the dentist, except he assures me the chair is only horizontal.

Good job I was knocked out for my prostatectomy then. No shoulder pain, and in fact I have suffered more pain at the dentist’s!

User

Posted 11 Sep 2018 at 17:03

Hi Lyn

I have been drinking cranberry juice, I have only had one coffee a fortnight ago, that's the first caffeine since November before my treatment started. I don't have chocolate because of the caffeine, totally caffeine free :). BTW I read there is no evidence Cranberry is helpful for radiotherapy cystitis, and for treating UTI's it is only any good in capsule form.

I think it is just the radiation has blasted part of my bladder and while it re-grows and settles down it will be a pain (literally)!
I don't suffer from incontinence though if a clinic does exist then I assume they will be of help. I have mentioned twice to a GP and after making sure it's not an infection he loses interest. I'm retiring the end of this month and I think being at home I will be drinking a lot more water as I hardly drink any, less than a litre a day including my time at the gym (mainly because I have to walk miles at work to the loo). I think once I'm working around home as I retire at the end of the month I will be able to flush through more and maybe that will help.

Unfortunately Green tea to my taste is awful (and it does contain a caffeine), water I drank for radiotherapy because I had to but like my mother I just don't like the taste. Fruit teas I've also tried, tastes like strained sock so drinking is a bit of an issue. If I need a hot drink then it's vegetable OXO :) but only one because it's high in salt.

Can anyone tell me how to get a picture on my profile. Every time I try to add a photo it says not a picture format? I've checked the size, JPEG, BMP and PNG. Still no luck and I don't see any mention of a particular format.

Thanks again for your reply. Gradually getting wound up for my PSA test Friday. We had a McMillan coffee morning here in the office this morning, went well considering there are only about 15 people at work today. :) Take care all :)

User

Posted 11 Sep 2018 at 17:09

Hi Bollinge

Just read your reply and 30 degrees :)

I don't have blood flow problems, in fact until I started the Hormones I didn't have any symptoms.
Picked up purely by chance in a charity funded screening session which I only attended because my wife insisted I go as mt PSA test three years earlier was normal. Strangely the surgery can't find those results now as they have changed computer systems!
It came back as 14.7 amd as they say the rest is history :)

User

Posted 11 Sep 2018 at 19:03

Originally Posted by: Online Community Member

I was completely unaware that RALP surgery for instance is performed on a 30 degree decline so blood flow and other factors are also considered. It’s not as clean cut as you think.

Fresh

I was too, and I couldn't understand why blokes on here were complaining of shoulder pain after RP. I thought the roots of the prostate can‘t reach all that way to the neck!

I get p****d off when I am hung up by the feet like a bat at the dentist, except he assures me the chair is only horizontal.

Good job I was knocked out for my prostatectomy then. No shoulder pain, and in fact I have suffered more pain at the dentist’s!

I was told the shoulder pain was caused by trapped wind, or rather the remains of the gas they injected to inflate my bowels during the op. Certainly hurt. Didn't know where to put myself for a few hours on the morning after the op.

The op angle presumably explains the odd pattern of apparent bruising I had (actually internal staining of the skin with leaked blood - I leaked a lot!) on my left side from ribs to upper thigh. Was really black for weeks and then multi-coloured for weeks more. Still some slight staining 3 months on.

Ref the cranberry juice, I was drinking a fair bit of it after my catheter was out and struggling with a UTI. After a while I realised that the cranberry juice was increasing the stinging, not reducing it. Possibly because it's fairly acidic. Anyway, I was actually more comfortable without it and was told it only serves any purpose if you have a UTI as the bugs don't like the acidity and it may also have a non-stick effect. Might be worth trying a day off it?

Nick

User

Posted 11 Sep 2018 at 20:34

Well, the more I read about reports of your surgery as detailed from the two or three correspondents above, the more I think how fortunate I have been with mine, as I had none of the above post-operative complications mentioned.

Was I lucky, or did I have a world-famous surgeon employing a ground breaking technique?

Probably a bit of both.

Cheers, John.

User

Posted 12 Sep 2018 at 19:21

Well, as we had the same surgeon, you certainly got luckier than I on the post-op complications front!

Nick

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