Well,I,ve been diagnosed today..

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.

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

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 

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.

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.

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

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

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.

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.

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

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

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!

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

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.

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

Not sure what you're point is Lyne?

dl

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.

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

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

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!

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

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.

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

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!

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 :-(