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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.

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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

 
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