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Well,I,ve been diagnosed today..

User
Posted 23 Jan 2015 at 22:58
So,I've been diagnosed with prostate cancer,apparently I should be happy it's localised to my prostate,and have been recommended surgery to remove the gland entirely.

I,ve no idea quite what the repercussions are,or what to expect after surgery,or even if surgery is the right way to go for me?

Basically,I know very little about any of this and am trying to learn quickly.

My doctor gave me an mot,about 3 months ago,I had two blood tests which showed raised psi,I then moved onto an mri,that was inconclusive and then a biopsy,the result of which I was given yesterday.

Any thoughts,ideas,help,advice,would be great,as I truly

understand very little about my current predicament.

I,m still working,feel fit as a fiddle,and the shock of finding I had cancer wasn't really a shock at all,I already knew inside,I think your body tells you stuff sometimes,and I,m not really reeling from the news,i,m just in the dark about it,and want help to find a path for myself

User
Posted 17 Feb 2015 at 21:19

Anyway,

Sonic,

How are things with you? And have you made, or are you coming to a decision regarding treatment yet?

dave


User
Posted 17 Feb 2015 at 21:33
Originally Posted by: Online Community Member

Anyway,

Sonic,

How are things with you? And have you made, or are you coming to a decision regarding treatment yet?

dave


Thanks Dave poor Sonic must be wondering what the hell happened to his thread (oops sorry conversation in new speak)

Hi Sonic hope you are doing Ok?

xx

Mo

User
Posted 15 Feb 2015 at 14:23
No he didn't refuse to have his prostate removed, I don't think I have really done a profile, I only put wife/partner of someone diagnosed, I have never filled any other info, keep thinking I must at some point. If said anything on my first post it would be that he didn't want his prostate removed as he was so worried about ED and incontinence, but he never actually said that to any consultants.

I don't know anything much about brachy or EBRT causing bowel cancer, I don't want to know really, I have seen you say it before. We were told EBRT would cause more bowel side effects, as he suffers with an upset tummy all the time they said brachy would be better. At this point we told them about the farm and how taking a good 4 or 5 hours out the working day would be hard, this steered us towards brachy even more.

I will fire the laptop up shortly as I am on my phone and check out profile.

The only point I was really trying to make was that all hospitals probably take a different approach.

The luck is in the draw whether you live near a more advanced facility.

I have already said to the other half that when he retires and sells the farm to make sure a large chunk of money is put aside Incase one day we have to pay for treatment. We see on the news that many health trusts can't afford cancer drugs, so it would be nice having something to fall back on if needed. Though so far the only thing I can fault the nhs on is the long waits (and they nearly cancelled brachy the night before due to lack of nhs funding, had we the money we would have paid for it)

User
Posted 26 Feb 2015 at 22:43
WOW.......

I leave for 5 minutes and look what happens....Please feel free to continue the rants..lol.

I haven't had a chance to post recently,been consumed with work,so I was pleasantly surprised to see,in my absence,the rather lively debate

that had sprung up following my own rather small efforts.

I go under the knife on the 2nd of April,2015.

I have initially taken 3 weeks off work,but with a proviso to increase this as I need.secretly hoping for about 3 months,lol.

I am,as stated fairly naive to the whole prostate debate and can only offer my very small inkling as to the best route for anyone to take.

I have put my trust and basically my prolonged life in the hands of my consultant,whom I,ve come to like a lot and consider what he tells me to be true.

He has said that were it him,he would take surgery,despite the possible/probable post op probs.At my age and considering localised cancer i agreed cos he,s a nice guy.

Only kidding....my options are the same as anyone's and each makes the best choice they can given the facts,personal circumstances etc..Mine is surgery,not that I,m looking forward to a catheter,and no fun in the sack,but she,s going to have to live with it,haha,

But that's half it as well,she,as in my better half,has her say as well,and after much ado about nothing came to the conclusion,that anything that gives me a fighting chance,is a fighting chance.

Prostate removal to me seems a no brainier,considering all factors,but as I said this is a completely personal choice and one each of us makes for themselves.

Looking forward to it to be honest,i want to get on with it now,no patience at all!,and am ready to begin phase 2.

Glad your all still here,and debating fiercely,wishing you all love and long life.

User
Posted 08 Apr 2015 at 00:07
Hey guys,been a while,,I see the the posts been piling up,lol

Well, I,m 5 days post-op and feeling pretty good let me tell you,I was a mess the day after,but was discharged late that day,and have been resting up and taking it VERY easy since.

The op went well and according to plan,I have a follow up in a month,catheter out in 3 days,stomach is starting to settle down,everything seems to be working normally so far in,and am now taking no painkillers,walking in my garden briefly,and actually feel i,ll be tentatively making an excellent recovery by next week.

As far as surgery goes,this was what it was....won't say it was easy..as u know...but taking the plunge and taking this route WAS the best for me.

Obviously..as with all..time will tell..but feel confident in my consultant and his words of encouragement pre and post op.

Will keep you all posted as to my recovery and how things go in the next few months.

You have all been highly supportive at a time when I really needed that kinda help,and I salute you all for that.

I wish you all well as always and my sincere love to you all...a simple thing but I,ve learnt a very powerful one too. :)

User
Posted 09 Apr 2015 at 11:50

Lol Tweed,old man,and thanks for the aged advice:)
Spent 3 and half hours in my local A&E last night,a harrowing experience!.but one I needed to do,if not for the antibiotics I finally walked out with, then just for the reassurance that this was no more than the urinary infection I thought it was.
The pain was excruciating when peeing but passed very quickly,the cause? My catheter had roughed up the inner walls of my urethra and was being agitated by the flow of urine. Damn that catheter,first time I ever have one and on its way out,having caused me nothing but satisfaction,it leaves me a little reminder that nothing is often pain free,lol
Strong antis and 3 litres of water will I hope bring things back stable.

Good luck Guys.

User
Posted 16 Apr 2015 at 13:22

Hi Paul,

Yes,the stress incontinence seems to be part and parcel.i wasn't quite sure at the start how bad or not it would be.
I,m coping with it too,and it's one of those things you got to put up with for a while.
Keep up with the Kegal exercises,they seem to be helping me,and leakage is at a bearable minimum now.
Glad your doing ok.
Steve.

User
Posted 24 Apr 2015 at 20:38

Hey Mo,

Many thanks for the encouragement,you,ve been a star since I came on here and I appreciate you have your own struggles to contend with.
I hope all is well with you too.
Paul and George are stable buddies now,lol,hoping to hear some feedback from George soon as he went"under the knife" most recently.
Got a question for you,did you experience any change in your sensations when peeing,I get the usual feelings but it's almost painful when I pee,it's not, but its like the pain I felt when I had the infection,but doesn't turn into that pain full blown,it recedes as I finish peeing.
I,m only guessing,but I think it could still be the effect of the catheter removal and the healing process still in progress.

All the best to everyone,
Steve.

Show Most Thanked Posts
User
Posted 24 Jan 2015 at 01:59

Hi Sonic,

Welcome to the place we had rather not be. Many of us experienced no symptoms of PCa and because of this it came as an even bigger surprise. There is certainly I lot to take in and you really do have to get a good grasp of the treatments and potential side effects because sometimes you have several options and although there are back up treatments, you only get one shot at surgery or first line radiotherapy, although for the comparative few who have HIFU (High Intensity Focal Ultrasound) as main treatment, this can in need be repeated.

A good place to start your research with a view to finding out more about PCa and which treatment option you prefer (assuming there are also other options you could choose from apart from the surgery you have been offered), is the The Tool Kit on the main area of this charity site. You can also read the profiles of those who have posted, as these show how individuals stories, treatment and progress. You just need to click on the poster's name. Also, you can use the search facility to find threads (which are now referred to here as 'Conversations' ), about various treatments and a wide range of other things relating to PCa.

You have been told that your cancer is contained within your prostate and it follows that you stand a good chance that treatment will deal with it effectively. It may well be that you will follow the recommendation of your consultant and have surgery but it is good to know what else might be on offer. To help you and members better understand where you are on your cancer journey, it would be useful if you could fill in some details in your profile - things like PSA on diagnosis, Gleason grade assessed at biopsy, your staging, scan results and the type of prostate cancer you have. If you don't know these details you can ask your GP who should have been made aware. If you have not yet done so, you can also ask to receive a copy of all medical communications about you.

Barry
User
Posted 24 Jan 2015 at 05:36
Hi Sonic

Sorry you are here mate. Like you I have been recently been diagnosed ( October 2014) and like you I am relatively young (49). I am not the best to give advice on your situation as mine is more advanced however all I can say is that there are many on this forum who have been just where you are and others who research loads so do post, do read and then you will feel so much calmer and have more meaningful discussions with the experts. no question is a silly question for this forum, we all started off here ignorant to a large extent. Take care, Kevin

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 24 Jan 2015 at 09:22

Hello Sonic,

We're a bit in the same boat, although my other half is 62. Found out a week ago that he has a low grade, localised prostate cancer. This forum has been a great place to visit.. good information, support and advice. The level of everyone's knowledge is very thorough, and I've found reading their stories to be reassuring.

I won't even try to advise you....too new ourselves...but just say 'hi'.

Warm wishes

Sue

Edited by member 24 Jan 2015 at 09:23  | Reason: Not specified

User
Posted 24 Jan 2015 at 09:28

Hi Sonic

Your situation is similar to mine when I was diagnosed in 2013.

There is lots of advice on this site - http://prostatecanceruk.org/prostate-information/choosing-a-treatment will take you to the appropriate pages.

I took the robotic surgery route. I'm living a good quality life 10 months post op. I have to wear one pad per day for incontinence, and erections are not happening naturally, although a tablets are beginning to work and I use a pump regularly to achieve full erections. If you have a partner who will actively help and encourage these to return, so much the better.

The path you choose may well be different. I felt surgery was best for me and haven't regretted it. Good luck in making the right choice for yourself.

Paul

Stay Calm And Carry On.
User
Posted 24 Jan 2015 at 10:49

The fact that your tests show that your cancer is contained within the prostate at this point is good news. It has been found early and is treatable to the extent where you may recover completely. However, this is only part of the story. The aggressiveness of the tumour(s) you have is of utmost importance too as is the size/quantity. The tumour may be a very slow growing one, a 'pussycat' or it could be one that grows and spreads quickly, a 'tiger'. If yours is a pussycat you may choose a course of treatment over a long period of time that deals with it but minimises side effects. On the other hand a 'tiger' is something else and you may need to take more immediate steps to eradicate it.

 

You have already identified your need to educate yourself to an extent where your own understanding of the issues will allow you to make an informed decision about what form of treatment is best for you. No one will be in a hurry to advise you to do one thing or another although you may find that a surgeon will advise you to have surgery whilst perhaps radio therapy may be advised by the doctors who use and administer this form of treatment, so understandable from their point of view. You will make up your own mind quite quickly I think.

 

Good luck with it all. You must be feeling quite down at present but that will pass I assure you. You are in a good position because your cancer seems to have been discovered early enough for treatment to be very effective so nil desperandum!

 

Ask any questions you may have. Someone on this forum will have experience and be able to give advice whatever you need to know.

 

Steve 

User
Posted 24 Jan 2015 at 11:42

Hello Sonic and welcome.

Just to re-iterate what the others have said really.
The "Tool Kit" is obtained by going back to the main page, then "Publications". Any or all of them can be downloaded or hard copies ordered if you prefer to have it at your fingertips for browsing.

It would be helpful as far as advice goes, if you could give details of PSA, and Gleason scores if you have them.

You have come to the right place anyway.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 24 Jan 2015 at 23:25
Hey to all, thank you so much for all your replies, mean's a lot to me to read your frank and encouraging responses..I,ll tell you straight that what I can't get my head round is the fact that I,m feeling quite healthy,living an active,normal life,working hard,and that after this op,I,m going to be massively incapacitated,with erection problems and possible(probable) incontinence at 48. What a total bummer!.

The cancer doesn't seem scary because I can't feel it,death doesn't scare me ,I,m resigned to that eventuality,and come close to it before,but the thought of being even the slightest bit disabled physically does.

Sorry,guess I,m ranting and venting a bit.

Will get the medical details requested and post up asap

Chemo was also mentioned as an option,but it seems there is a possibility of secondaries with this in later life? Plus a fairly tough ride. As the cancer is isolated I,m thinking surgery will be my first and best move.

Will definately be posting regularly once I find my feet and feel this is a great place of comfort and understanding.

Thank you all again for replying,and all my best to all of you in your own situations.

User
Posted 24 Jan 2015 at 23:28
Ps..I do rememberpsi,s were around 4 and 5.

But will get the full sp from my doc and post up

User
Posted 25 Jan 2015 at 01:10

Definitely a bit muddled at the minute Sonic - chemo is not available as a treatment for localised prostate cancer. I don't think there is any research to say chemo causes secondaries either. Perhaps you misheard and what they said was that chemo is only offered to men with secondaries (mets).

With surgery, incontinence is possible but not probable, complete impotence is unlikely although sex will certainly be different.

Once you have more info, you may decide that RT is a better option for you with more manageable side effects although the hormone treatment might not appeal at your young age. Brachytherapy might be a good choice or, depending on your results, you may decide to go for active surveillance to begin with and only have treatment later if it starts to progress.

My husband was 50 at diagnosis, and has had surgery, RT and HT. He has no continence issues and is no longer impotent although it took 3 years to sort itself out.

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

User
Posted 25 Jan 2015 at 09:18

Hi Sonic

Welcome (if that's the right thing to say!) to this site - I have found it really useful and I'm sure you will. It will be interesting to know all your details e.g Gleason, confinement, prostate size etc as they are important re. treatment options. I found this really useful: http://www.prostatecancercentre.com/treatsel.html#table1 when it came to treatment options. IPSS can be important as well, you find details on it at http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCMQFjAA&url=http%3A%2F%2Fwww.urospec.com%2Furo%2FForms%2Fipss.pdf&ei=F7TEVPKFLpDfapu_guAH&usg=AFQjCNF-QIoHvWgGxeYqUphwPJzE3AoD-w&bvm=bv.84349003,d.d2s

If the cancer is localised they will almost certainly push you towards surgery because of your age - they did me. I am going against the grain with them and am hoping for low dose Brachytherapy, tests to see if I'm suitable this week.

Good luck, keep in touch and post more details.

dl

User
Posted 25 Jan 2015 at 10:12

Hey up mate
You share the same concerns a lot of us have when diagnosed.

I think you probably meant radiotherapy has the risk of creating other cancers later in life.

The link Devonlad has shared is quite good. But take advice from your treating team.

If you are thinking about surgery make sure you have a good experienced surgeon, that is vitally important. Check my profile. My surgeon had done over a 1000 of these ops. I had laprosopic surgery (keyhole) but there is also robotic and open. Research these options. But without a doubt recovery times are quicker with the former two.You have the right to ask your surgeon about his experience and success rates both in terms of achieving total removal of the cancer eg negative margins and his success with minimising side effects.

You need to know if nerve sparing is possible....This is important for future erectile function. I am fully continent and was so 3 months after my op. I can get an erection sometimes without viagra but sometimes I need an hand if you get my drift. I put all this down to the skill of my surgeon and the fact my nerves were spared. Having said all that I did need follow up radiotherapy as I had a tiny breech of the prostate that the scans or the surgeon had not seen (due to the size)

You mention 4 or 5 can you confirm if that is your PSA or Gleason score from the biopsy.

To summarise mate. If they feel it is contained and you feel surgery is your preferred route make sure you get an experienced surgeon in this procedure. I can't stress that enough. This will give you the best chance of the outcomes you so obviously desire.

Bri

Edited by member 25 Jan 2015 at 10:19  | Reason: Not specified

User
Posted 07 Feb 2015 at 19:01
Hey,really appreciate all you guys posting replies for me.

Have thought long and hard on the subject recently,and have decided to go with surgery,I realise the incontinence and erection issues maybe a problem down the road,but if this is going to cure me of cancer in one hit,I think I have to way up the pros and cons.

If having to cope with those two side effects,means I,m in the clear and continue living,to me it's a no brainier.

I have to realise now that I have cancer and that in order to continue living I will have to make sacrifices to do that.thats not to say that the incontinence and erection things can't be addressed and improved on in the future post op and so it seems to me that I will cope ok with that.

If any of you guys think differently or through your own experiences feel I could take an alternative please speak up.

I,m 48 and think that I can push through this and face the future with a smile,whatever hardships are ahead.

User
Posted 07 Feb 2015 at 19:51

Hi

I was diagnosed just over 2 years ago at 55, and like Bri had a prostatectomy, then radiotherapy with (unlike Bri) added ADT as part a clinical trial. Like many guys on this site I have continued to work and have been fit and reasonably healthy since the surgery. Like you I went into it with my eyes open, for me nerve sparing wasn't an option but my wonderful wife still wanted me around!

So far the results have been excellent. I regained continence within 6 months of surgery and had very few side effects from the RT, the worst was that I lost a little of the regained continence and now wear a very light pad to catch the odd drip - very disconcerting when giving a presentation but I get round that by telling them that a medical condition means I cant stand for too long at a time.

Your realistic, positive attitude will help you get through this.

Good luck

Andy

 

 

User
Posted 07 Feb 2015 at 19:53

Hi Sonic

I'm slightly concerned with the comment "cure me of cancer in one hit " As previous posts show after surgery follow up treatment might be required such as RT and then possibly HT. I'm not saying that should deter you from your decision, just take the possibility on board now.

Best of luck with your treatment

Ray

User
Posted 07 Feb 2015 at 22:55
Hi Andy,

Many thanks for the insight and positive attitude,I,m feeling strong and positive about the future,

and thank you Ray for your words of caution.

Of course,I,m not idiotic enough to believe this all going to be a walk in the park,my attitude is very"what will be will be" and I accept that nothing in this life is guaranteed,but I have always taken life by the horns,and this is no exception.

I will accept whatever outcome comes my way,good or bad,but hey..never say die.

Hope you are all well,and giving cancer a run for its money.

User
Posted 08 Feb 2015 at 18:35

 

Hi Sonic -- Sorry you've had to join our club at the tender age of 48, but it looks to me as though you've made a good choice to opt for surgery. Heed the wise words of ManWithPC, SixFootTwo, Martenstoves, Lyn & others. The good news is that your PCa has been discovered at an early & treatable stage, & you have an excellent chance of making a complete recovery.

I hope my experience will reassure you. I'm 61 and had nerve-sparing RALP June 2014, with clear margins & post-op histology Gleason 3+4 staging T2c. Two weeks ago I had the second of 2 three-monthly PSA tests which both came back as undetectable, & during the past 7 months continence has slowly improved from my initially requiring 6 Tena Level 2 pads per day, to the point where I'm now pad-less & effectively dry. I'm well aware that my situation is more fortunate than some, but on the other hand there are lucky ones who regain control almost immediately, so I suspect I'm fairly average. Patience & pelvic floor exercises are key.

As regards the other area of concern following radical prostatectomy, ED, my consultant ( that's not his name, by the way ) has now prescribed 5 mg Cialis (tadalafil) daily in order to encourage re-generation of nerves & blood supply around the site of the operation, but warns that progress may be slow. I should add, though,  that I'm encouraged by signs of life "down there" over the last couple of months, even without any medication.

For the moment, channel positive thoughts towards the op, & good luck !

Morris

Edited by member 08 Feb 2015 at 18:36  | Reason: Not specified

User
Posted 09 Feb 2015 at 23:39
Hi Morris,

Thanks for taking the time to post,very glad to hear your treatment went so well,and your on the mend.

Any thoughts on how long after op I could be back at work?

I know it might sound a daft question, I mean,this is about saving my life,and work will take a back seat for a while,but I,m not that financially secure right now,so monies going to be real tight during the time I have to take off.

I,m pretty fit and well,apart from the obvious,so with exercise and good living I hope I won't be off too long...?

Can hardly wait to see the replies to this one...lol...I was hoping I may get back after a month or so..but I guess it's quite individual and could be longer.

User
Posted 09 Feb 2015 at 23:51

Sonic

Although I was 60 at dx, your thinking is the same as mine. I can only reiterate what has been written above by forum members. Good luck with your treatment, and keep us up to date with progress.

Stay Calm And Carry On.
User
Posted 09 Feb 2015 at 23:56

Hi sonic,

My first response to your thread, and it may be an encouraging one, I hope.

Early diagnosis is the most significant factor in recovery and cure, as far as a cure goes. So you seem to be in that camp?

It has been suggested that "Sex will certainly be different" for you. With PCa, the one certainty is that nothing is certain. So, the assertion that "Sex will certainly be different for you" is certainly uncertain. It may or may not be so, it may or may not be so for a short time or a long time or no time at all virtually, or forever. You may want to understand that following an op there will probably be, almost definitely be an impact, somewhat negative, on your current sexual lifestyle. But, whether or not is, there is no way of knowing how long that may last.

Similarly to you, I was as fit as a fiddle when diagnosed, what a surprise that was. I describe it as "rotting from the inside".

And do bear in mind that forums tend to get those with problems seeking help, advice and solace. The vast majority of men make a good recovery and do so silently and anonymously, lucky Bar Stewards!

atb

dave

User
Posted 10 Feb 2015 at 21:38
Sonic

I was back at work four weeks after my DaVinci RP. I was almost dry 4 days after catheter was removed. 9 months post op ED is still an issue but my OH and I still have fun. It was not all plain sailing and I have had further procedures (see my profile). Lynn says my recovery was amazing,but it was as predicted in the literature I was given "back to work within 2_6 weeks." We all recover at different rates, back to work may also depend on your type of work. What is a reinstater hug driver ? I did pelvic floor exercises for four months pre op and still do when I remember. My biggest fear was incontinence but was I lucky or was it the skill of my surgeon ? Make sure your are comfortable with your surgeon, mine had carried out about 140 Da Vinci procedures when it came to my turn but was very experienced in laparoscopic surgery.

Hope all goes well for you.

Thanks Chris

User
Posted 11 Feb 2015 at 17:36

Hi Sonic -- As Chris says, the time taken to get back to work will vary from person-to-person & be dependent on many factors -- age (very much in your favour !) fitness (ditto from what you say), what sort of operation (healing post-laparascopic is generally quicker due to smaller wound-incisions), degree of continence following operation, mental attitude....the list is a long one, but 4 weeks is fairly typical.The fact that I took 5 weeks off work was due to my employer being extremely considerate & had absolutely nothing to do with the fact that my period of convalescence coincided with Wimbledon & the World Cup on the telly! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

On the continence side, if you're extremely fortunate you could be dry after 4 days like Chris. As I think I mentioned I took 7 months to achieve that enviable pad-less lifestyle. In the bedroom department, even with nerve-sparing surgery ED will take longer to sort out. Your surgeon should discuss your priorities in relation to potential side-effects before the op, but I would imagine they'd be pretty much the same as mine, in order of importance:

(1) Get rid of the cancer

(2) Minimise or eliminate incontinence post-op

(3) Preserve erectile function in the longer term post-op

All the very best. Let us know how you get on.

Morris

User
Posted 13 Feb 2015 at 17:23

Hi Sonic. Just wanted to share with you that I am on a similar journey and have had all the same worry over choices. I saw my surgeon today and am booked in for surgery on 9th March. As daunting as this is to comprehend I want the problem removed in the same way I would want an old and decaying tooth extracted. No one can foresee the after affects and side effects until after surgery so I am just focussing on the surgery now and will deal with the aftermath when that is all done and dusted. I wish you well with your condition and hope you make a good recovery.

Edited by member 13 Feb 2015 at 17:23  | Reason: Not specified

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 13 Feb 2015 at 20:41

I have to say that I think you are all brave going along the route of having the prostate removed. When we first found out my other half had prostate cancer he completely panicked at the thought of it being removed. He can't take time off work being a farmer which was his initial worry. But when we saw the consultant they gave us info on brachy, radiotherapy and AS. The consultant said he wouldn't recommend surgery in a man as young as my other half (57) yet many of you are younger, he never mentioned it again. (Much to my other halves relief) I wasn't quite sure what he said about having it removed, something about bits being left behind and not being a good idea in someone so young.

 I do feel though that if you have it removed at least you know it is gone, I am sure it can't be known for certain if it has spread without actually looking inside? As some of you know he had brachy 5 weeks ago. Am I correct though, that the statistics of it returning are the same whether you have the prostate out or radiotherapy?

I know there are more options on treatment if it returns after removal, you can have radiotherapy, whereas if you have already had radio treatment you can't have it again. Nobody actually told us this at the hospital, I had found it myself online. The other half read that they can put in up to 120 seeds with brachy, he had 55 seeds, he thought that meant when it returns he can have the other 55 seeds put in...I had to explain it doesn't work like that! Just hoping when (I suppose I should say if, but I am a pessimist) it returns that there will be some new treatment for people that have already had the maximum dose of radiotherapy!

User
Posted 13 Feb 2015 at 22:05

I guess I'm one of the lucky ones,surgery at 56, getting on towards 2 yrs this coming July not sure what age those those that say that too young to have the op mean.

Dry after 7 months no erectile problems,manual handling helps.I think general fitness helps,I'm no marathon runner but liked/like a good walk to keep relatively fit,the skill of the surgeon is also a factor.

 

Sadly it must be realised for some incontinence remains a problem long after surgery,Capitalman springs to mind (is he still around?) I suppose this is the main concern of all who undertook the surgery route.

 

Will the cancer return who knows but to me at least the option was the much preferred route and I don't regret it one bit.I would add make your choice on treatment what best suits you and don't look back.

User
Posted 14 Feb 2015 at 00:28

Originally Posted by: Online Community Member

I have to say that I think you are all brave going along the route of having the prostate removed. When we first found out my other half had prostate cancer he completely panicked at the thought of it being removed. He can't take time off work being a farmer which was his initial worry. But when we saw the consultant they gave us info on brachy, radiotherapy and AS. The consultant said he wouldn't recommend surgery in a man as young as my other half (57) yet many of you are younger, he never mentioned it again. (Much to my other halves relief) I wasn't quite sure what he said about having it removed, something about bits being left behind and not being a good idea in someone so young.

Thanks for this sjtb but it is something that confuses me. My original consultant (a surgeon) clearly tried, big time,  to persuade me that surgery was by far the best option for men as young as me when I was diagnosed with PCa (I was nearly 59 when diagnosed). The work these consultants are doing is brilliant .... but there needs to be consistency in their messages. Perhaps the NICE regulations will help - I certainly recommend anyone diagnosed with PCa to read them before agreeing to their treatment.

dl

User
Posted 14 Feb 2015 at 01:40

Too young, too old ..... John was refused brachy for being too young and opted for surgery instead. He was 50.

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

User
Posted 14 Feb 2015 at 08:39
Yes Lyn I have seen you say that before. I suppose each person. Consultant etc has their own ideas. The lady that said removal was not a good idea was a general oncologist. I don't think she specialised in prostate cancer. The next chap we saw just does prostate cancer, mostly brachy, so that is the direction he suggested, though he really tried to persuade us to do AS. We did for a few months, he never really suggested surgery at all. I just tried to research which one had the least chance of a return. But I could only find similar rates for all 3 main treatments.

We have a friend that had his prostate removed very young in his early 40's not sure exactly why, but I know he had just lost his father to prostate cancer. 15 years on he is still fit and well. We have another friend that had radio treatment 12 years ago, his Psa is now back on the increase. Not sure if this means removal is better, I think it is more a case of not knowing what will happen later in life.

User
Posted 14 Feb 2015 at 11:00

Been here for circa 10 years, I’ve still to see a best treatment for all. It also needs to be born in mind it’s not just the treatment that gives the best result as it’s also down to the unknown of such as are there any stray cells laying dormant somewhere waiting to mutate further. You can look at the charts saying x staging at x age gives x possibility of that being the case, but its still an unknown. All I can say is make the choice on what you feel looks the best option to you now. At 58 I would have chosen brachy because it would allow me control over my quality of life than the unknown quantity. However my staging ruled that out so I went with what I saw for me was the next best, RT/HT.

Good luck in your choice.

Ray

User
Posted 14 Feb 2015 at 11:05

You know my view - I think that whatever your husband said in those initial appointments about the farming and needing to be back on his feet in the shortest time was the reason surgery wasn't pushed.

EPIC provides valuable comparisons of the impact of the different treatments and UK stats suggest that the 5 year, 10 year and salvage outcomes are pretty much the same for RP, RT and brachy.

Re the brachy, at our hospital (a cancer centre of excellence) the alleged increased risk of bowel cancer some years later means it is not offered to young men whose life expectancy could reasonably be believed to be long enough for the bowel cancer to develop

Edited by member 14 Feb 2015 at 11:22  | Reason: Not specified

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

User
Posted 14 Feb 2015 at 11:54

Yes Lyn he would have struggled to work, but at that point they had not asked what he did for a living anyway, no one asked at urology or at oncology. They only asked if he worked once we were referred to the brachy chap.

I can quite believe brachy causing bowel cancer and bladder for that matter, my other half has been burning constantly in his prostate, bladder, back passage and right to the tip of his penis, it seems constant, was ok first week or so and gradually getting worse and worse, it can't be doing him any good. Seeing consultant Monday thankfully.

Edited by member 14 Feb 2015 at 11:57  | Reason: Not specified

User
Posted 14 Feb 2015 at 23:06

Originally Posted by: Online Community Member

Too young, too old ..... John was refused brachy for being too young and opted for surgery instead. He was 50.

Not sure what you're point is Lyne?

dl

User
Posted 14 Feb 2015 at 23:36

Originally Posted by: Online Community Member

You know my view - I think that whatever your husband said in those initial appointments about the farming and needing to be back on his feet in the shortest time was the reason surgery wasn't pushed.

Lyn

Surely choice of treatment for any man with PCa has a lot to do with their personal circumstances. e.g. I am self employed and 6 weeks off work after RP is not an option for me as it wouldn't be with most farmers. My understanding is that bowel cancer occurrence after RT is a measurable statistic but still very, very small whereas continence and erectile problems after RP are considerable. Even the surgeon I first dealt with admitted this.

Also my understanding is that whilst there is no concrete evidence ATM that after Brachy there is any less chance of developing bowel cancer than with ERT the main advantage of Brachy over ERT is that it concentrates the radiation in the area it is most needed and avoid 'collateral' damage to other nearby parts of the body ......... in which case one would expect the results of the current studies would eventually show that after Brachy one has less chance of developing collateral radiation damage. Also with Brachy serious side affects (continence and erectile functions) are overall less of a problem than after RP and therefore disruption to 'normal' life, which is more important for some than others, is much less.

If, as may be offered to me if my cancer is very localised, they can offer treatment that targets the cancer rather than the whole of the prostate gland then the possibly of bowel cancer occurring after Brachy (which is already very, very small) would be even less.

As we are all individuals both physically, spiritually and mentally and our cancers and personal circumstances are almost unique then the range of options men would chose, if offered the whole range of treatments, are likely to be wide.

My view is that a man should be clear that whatever treatment they eventually have they have chosen it, or are 'happy' with their consultants choice.

All should be offered the full choices without prejudice.

dl  

Edited by member 14 Feb 2015 at 23:38  | Reason: Not specified

User
Posted 15 Feb 2015 at 00:57

DL, it is great that 4 months after diagnosis you are such an expert - I shall pass your advice on to our local centre of excellence in the hope that they realise the research is wrong and change their treatment policy.

Your belief that all men should have all choices is well meaning but naive. In sjtb's profile, she clearly states the reason that EBRT was unsuitable for her OH, and that he refused RP when they told him he could be left impotent. Difficulty getting someone to milk the cows meant that brachy was attractive as it allowed him to be back at work 3 days later which certainly isn't possible after RP. I think you could say that other options were opened to him and he chose what he thought was best.

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

User
Posted 15 Feb 2015 at 01:06

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Too young, too old ..... John was refused brachy for being too young and opted for surgery instead. He was 50.

Not sure what you're point is Lyne?

dl

 

Sorry - which bit don't you understand? Some people are too young for some options, some people are too old. In general, young men are encouraged towards surgery and older men are pointed towards radiotherapy. There are exceptions - men with heart problems can't always have LRP and some men with breathing problems struggle with HT. A few have the RT without the HT but this seems increasingly rare. A friend of ours was put off brachy by the fact that he would not be allowed to cuddle his grandchildren for a while - pre-existing medical conditions prevent him from having RP so he has opted for active surveillance instead. 

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

User
Posted 15 Feb 2015 at 08:29

DevonLad you are right in that consequences of any treatment option need to be considered early on, but some consequences are more important than others, are they not?

Some people here post that they will go for a treatment option so that they do not have to travel too far for follow up treatment or so that they can be visited more easily by relatives. One of your factors appears to be so that you can carry on, or get back to working on the farm as soon as possible?

Can understand that this would be a concern for you but not that you would opt for the treatment for this reason? Sure the clinical reasons are the only ones that should govern our treatment choice, as far as is practicable?

Anyway, you have decided and I hope it all works well for you, in terms of recovery and longer term prognosis.

dave

User
Posted 15 Feb 2015 at 08:50

When we first thought my other half had prostate cancer (between biopsy and results) I googled all treatments, he said he would not want to have it removed.
When we spoke to the oncologist, he did not tell her he didn't want it removed, neither did he say he was a farmer. She just went through options, she said due to his bowel problems she would not recommend EBRT she said removal was also not recommended in man so young, HE NEVER REFUSED IT, she said Brachy was a good option but thought AS was best.
Hospitals obviously do things differently, we were given a large pile of books on Brachy, AS and EBRT and told to have a good read through. No info was given on removal, it was definitely not him saying he didn't want it removed as he only said that to me.
The only thing he told the oncologist he didn't really want was hormones, having seen a friend blow up on them, also I had to have zoladex myself for 6 months and went from 8 stone to 11 ( amazing that zoladex is for woman too!) but he told her if he had to take them he obviously would. But they said prostate was small so hormones not needed. I noticed Lyn that you said it is rare to be offered no hormones, we have 3 friends all had brachy in the last 3 years, none had hormones, we were not offered them either, one of them had an aggressive cancer but still contained, the others were like my OH with a gleason on 6.
So our hospital does not favour removal.

Edited by member 15 Feb 2015 at 10:37  | Reason: Not specified

User
Posted 15 Feb 2015 at 09:40

Actually while doing my ironing this morning I have been thinking of the time he was diagnosed, the urologist told us the biopsy results, he said we would be referred to oncology, he then sent us into a room with a Macmillan nurse, she briefly ran through treatment options with us, she said at this hospital they avoid removing the prostate unless really necessary, she said you can ask for one in in the future (at that point AS had been recommended) she said it can be removed up to age 70 then they won't do it anymore. But I definitely remember her saying they tend to not offer it, she went on to explain how common it is in America. We thought no more of it.
When I visited this site I realised how many men have had it done and I can understand the reasons.

Edited by member 15 Feb 2015 at 10:34  | Reason: Not specified

User
Posted 15 Feb 2015 at 10:30

Originally Posted by: Online Community Member

DL, it is great that 4 months after diagnosis you are such an expert - I shall pass your advice on to our local centre of excellence in the hope that they realise the research is wrong and change their treatment policy.

lol - I guess their is no point anyone posting on this site except Lyn then!

I would like to ask which part of my post disagreed with the 'experts' but to be honest I'm not really interested in hearing your reply.

Think I'll stick to PM's from now on.

dl

User
Posted 15 Feb 2015 at 10:41

As I put above Lyn they do offer brachy (and EBRT) with no hormones, we have 3 friends all have had brachy and were not offered hormones, it must be more common at our hospital. My other half was told he did not need them for brachy or EBRT, perhaps they are wrong, but we can only trust them. Perhaps yours is a better hospital, but we have no choice on that one!

User
Posted 15 Feb 2015 at 11:28

Devonlad you said you were referred straight away to a surgeon, we were referred to a clinical oncologist, he specializes in breast, skin and prostate cancer, also does brachytherapy. I guess that the person you are referred to plays a big part, a surgeon is obviously going to push in that direction. As I said surgery was not really discussed as an option. Hospitals must vary a lot. I think it is great we have the choice to read up on the computer now, years ago you would have taken the path you were pushed towards. If I had not looked on here we would have still been on AS. 

We were told with a psa of 4.9 and gleason of 3+3 it won't have spread and that we could have brachy right up to the point of psa being 15. Having read other peoples profiles I can see that it can spread with a much lower psa, I am sure the gleason needs to be accounted for, but reading this was enough to make me get the OH to seek treatment. So for me getting the most information was important. If I had not looked all this up (the OH never really Goggles anything apart from farm stuff) he would definitely be following advice of AS. We have our appointment tomorrow, I have a list of questions I want to ask, including why they don't offer hormones after, as many people seem to think they are essential. Also the risk of bowel cancer. Will let you know how we get on.

User
Posted 15 Feb 2015 at 12:02

Hi sjtb - I'll PM you later, family arriving ;-)

dl

User
Posted 15 Feb 2015 at 13:21

Very odd - I checked your profile at 1am while replying and you clearly stated in the profile that he had refused RP because he was told there was a risk of ED. The profile seems to be missing now :-(

Higher up in this thread, you say that he was told hormones with EBRT but not with brachy (by one person) and something different by someone else, and that your husband said he didn't want HT.

As I said, RT without HT is unusual - generally, when people say RT on here we mean EBRT or IMRT and we use brachy to differentiate.

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

User
Posted 15 Feb 2015 at 13:38
Originally Posted by: Online Community Member

My understanding is that bowel cancer occurrence after RT is a measurable statistic but still very, very small whereas continence and erectile problems after RP are considerable. Even the surgeon I first dealt with admitted this.

Also my understanding is that whilst there is noconcrete evidence ATM that after Brachy there is any less chance of developing bowel cancer than with ERT the main advantage of Brachy over ERT isthat itconcentrates the radiation in the area it is most needed and avoid 'collateral' damage to other nearby parts of the body ......... in which case one would expect the results of the current studies would eventually show that after Brachy one has less chance of developing collateral radiation damage.

dl

Data currently indicates the opposite - that bowel cancer (although only a very small risk) is more likely after brachy not less.

The danger of PM rather than posting openly on the message boards is that no-one can pick up the mistakes we all make from time to time and correct any misinformation.

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

User
Posted 15 Feb 2015 at 14:23
No he didn't refuse to have his prostate removed, I don't think I have really done a profile, I only put wife/partner of someone diagnosed, I have never filled any other info, keep thinking I must at some point. If said anything on my first post it would be that he didn't want his prostate removed as he was so worried about ED and incontinence, but he never actually said that to any consultants.

I don't know anything much about brachy or EBRT causing bowel cancer, I don't want to know really, I have seen you say it before. We were told EBRT would cause more bowel side effects, as he suffers with an upset tummy all the time they said brachy would be better. At this point we told them about the farm and how taking a good 4 or 5 hours out the working day would be hard, this steered us towards brachy even more.

I will fire the laptop up shortly as I am on my phone and check out profile.

The only point I was really trying to make was that all hospitals probably take a different approach.

The luck is in the draw whether you live near a more advanced facility.

I have already said to the other half that when he retires and sells the farm to make sure a large chunk of money is put aside Incase one day we have to pay for treatment. We see on the news that many health trusts can't afford cancer drugs, so it would be nice having something to fall back on if needed. Though so far the only thing I can fault the nhs on is the long waits (and they nearly cancelled brachy the night before due to lack of nhs funding, had we the money we would have paid for it)

User
Posted 15 Feb 2015 at 14:32
Also yes, when we saw the lady oncologist she thought he would need hormones before EBRT. But not with brachy. She referred us to another chap, a clinical oncologist at another hospital and he said as the prostate is small already then no hormones are needed for either treatment. I will ask him tomorrow why some people have them after. Though as I said the people we know that have had brachy have also not had hormones, I don't know why but I will find out.

Checked out our profile and I have not done one, as I thought. My age is wrong on it, I'm younger, can't find how to edit it on my mobile, but I will try to do a profile.

Edited by member 15 Feb 2015 at 14:37  | Reason: Not specified

User
Posted 15 Feb 2015 at 15:25

Treatment refinements tend to become more widespread as research shows beneficial but there are will be exceptions to the rule in certain cases. As regards HT with EBRT, it was generally pretty widespread to have 3 months HT before RT. Following studies, this period is often extended now to 6 months. Also, although more variable, HT is increasingly being given from anything up to 3 years after RT. I do not know how this compares with brachy as I was not suitable for it and therefore have not studied it greatly.

Clearly, some hospitals are biased in favour of one treatment over another and provided a man is well enough will not cap surgery at 70. My hospital would have surgically removed my prostate when I was 71 if I wished but the surgeon said he doubted he could remove all the cancer so recommended IMRT which can reach further than the knife.

I am surprised that a hospital seems rather opposed to surgery as it remains the most effective treatment where the cancer is contained and can in need more easily be followed with RT. That is why my 2nd opinion who was a specialist advisor to the UK Government on radiation, told me the generally held view was that surgery was the 'Gold Standard' treatment for PCa. That is also why it is favoured for younger men because of their greater life expectancy.

But as has been said, where there are options, we make our own choices, if we feel we can do better by transferring to a hospital that offers an alternative suitable option we want, that is down to us.

Barry
User
Posted 15 Feb 2015 at 15:52
I expect you are right Barry, but I couldn't find anything online to support the outcome being better. I didn't clearly hear what the consultant said (it was a lady who referred us onto another chap) all I remember is something about they don't usually take the prostate out for someone in their 50's, with a low grade cancer, I remember something about bits can be left behind, causing problems in later life. I did not question it, knowing the OH would tell me off.

It was a Macmillan nurse that said they don't favour prostate removal in our hospital. But our decision has been made and brachy done, my other half went and saw a few people that have had brachy, a few others have had EBRT he also spoke to them. The only person we know that had his prostate removed I spoke of earlier, not seen him for a few years, though the other half knows where he works, but didn't see him as not been offered prostate removal. Having read what I have read perhaps we should have asked more, had it been my treatment I would definitely have asked. But it was not my decision.

Obviously treatment has been done now. There are surgeons who still remove the prostate after brachy if needed in future. Let's hope it isn't. He could be hit by a bus before then!

User
Posted 15 Feb 2015 at 23:02
Quote:

So Lyn

The following statement that I made on my earlier post quote "Also my understanding is that whilst there is no concrete evidence ATM that after Brachy there is any less chance of developing bowel cancer than with ERT the main advantage of Brachy over ERT is that it concentrates the radiation in the area it is most needed and avoid 'collateral' damage to other nearby parts of the body"justifies your response of "DL, it is great that 4 months after diagnosis you are such an expert - I shall pass your advice on to our local centre of excellence in the hope that they realise the research is wrong and change their treatment policy." does it? Well frankly it doesn't!

I joined this site to be encouraged and encourage and several of your posts have done just the opposite in my view and are not necessarily correct in the overall picture. e.g. I can send you, or anyone else reading this, numerous links to medical papers suggesting their is no difference in bowel cancer occurring after either ERT or brachytherapy, some that suggest that it's one way or the other and several suggesting that the risk with either is approx. 35 patients in 10,000 subsequently getting bowel cancer. I think most men or women with cancer of any sort would settle for those odds. However, the main point is - in order to encourage sjtp and others affected by this disease, is that the risk is tiny with either of these radiation treatments. Me, sjtp and others do not need to be confused with whether the risk is very small, very very small, tiny or the other way round! We just need to know that it is unlikely that those with PCa are unlikely to get bowel cancer after any form of radiation treatment. That's encouraging.

Alas also ... in answer to your post above "The danger of PM rather than posting openly on the message boards is that no-one can pick up the mistakes we all make from time to time and correct any misinformation." I agree .... but also if we are in danger of receiving some of the responses that you provide then I'll take the risk! I assure you that I can back up any of my 'factual' claims with evidence of where I got the information from. By the way it's not 4 months since I was diagnosed, it's 6 (apologies for being picky) .... and it's amazing what you can learn about a specific subject in 6 months when you have a lot of time on your hands and you are a trained researcher.

Nuff said.

I'm afraid you have put me off open posting on this site as a straightforward post can become confusing after your replys. This tends to defeat the object of me posting. I wish you well though as I would with anyone affected by this disease either directly or indirectly.

dl

User
Posted 16 Feb 2015 at 23:27

DL, for the record, the problem seems to have been me posting that my husband's first choice was brachy but he was declined this option for being too young. You responded aggressively to this, apparently your research indicates that my husband's oncologist is wrong. I believe that a whole oncology department probably knows a bit more than you do.

None of this helps Sonic, whose thread it is. I will not respond to your threads unless you post something which is factually incorrect or could harm others who might get the impression that you are speaking with authority. Please feel free to post openly, safe in the knowledge that I have no more desire to communicate with you than you do with me.

Sonic, I am so sorry to have dragged all this out on your space. I will stop now :-(

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

 
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