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User
Posted 15 Dec 2015 at 18:54
Hi

I was diagnosed three days ago and since then have lived in a fog of fear, anxiety and bewilderment, this has been followed by relentless researching via the Internet which leads to frightening oneself to death !

Just like the beauty pageants, here are details of my journey and my vital statistics : )

October mentioned to the GP that I seemed over the past year to be getting up a little more in the night, but then again as far as I can remember, I have always got up at least once in the night, however, for some reason I mentioned it and he arranged a PSA test which came back at 6.0, I am a white male with no known relatives suffering from prostate cancer, I have just turned 60 but still say I'm 59 ; )

The GP carried out a DRE and said "Umm feels a bit nodular" ? So he arranged a consultant appointment which I received within the two weeks set out by Government. The consultant also carried out DRE and said it was not symmetrical, so arranged to start the Prostate pathway of MRI, Ultrasound guided TRUS biopsy and then finally a bone scan, this took place over four weeks and finally got my diagnosis 11/12, I have copied in information from my report, so hopefully these may ring a bell with someone, I am still going through the various remarks and working them out, wish there was a question on golf, I could understand that ; )

Prostate Left..... 1 out of 4...3% Gleason 3+3 = 6

Prostate Right ....4 out of 5...60% Gleason 3 +4 = 7

Overall Gleason 7

T1c Suitable for all treatments, no obvious tumour, no nodes

MRI scan Non specific changes within the perishable zones bilaterally, no visible prostate tumour, no extra capsular disease, no regional or distant lymphadenopathy

US Biopsy bilateral small patchy areas of hypo echogenicity corresponding to those seen on the MRI

Bone scan No scinitigraphic evidence of ossoues deposits

My Consultant said basically the tumour cannot be seen on the MRI and there was nothing on the bone scan but the Gleason 3+4 means we should do something, but it appears to be localised, he then discussed surgery using the robotic laparoscopy? and kept emphasising that I would lose erectile function and would have continence issues, he didn't mention nerve sparing, but then again, maybe he did, but it was lost in the moment.

He also said the options are open for Active survellience or radiotherapy, however, I now have an appointment with an Oncologist tomorrow, who will hopefully give me more information and options other than surgery, but is just getting rid of the damn thing with surgery the best option, I really don't know ?

That's about it really, I was given a toolkit of books, pamphlets and information from the lovely specialist nurse and I have been going through this and researching the sales blurb and alleged patients stories from Proton therapy in Prague and Germany ! as well as trying to find out who is recommended in the Da Vinci surgery as it appears this is very good, but depends very much upon the squidgy organic thing hanging on to the controls I.e. The Surgeon ! My local hospital has a Da Vinci machine, but it only arrived just over a year ago so I wonder about surgeons experience, and don't want to upset anyone yet asking the question, but I will when the time come and I don't feel as vulnerable.

So many thoughts and questions, and everything seems now to have an urgency, but I'm sure it doesn't, it's just the way I'm feeling, thanks for taking the time to read and offer any views and experiences

User
Posted 17 Dec 2015 at 18:45

Originally Posted by: Online Community Member

....... so I suppose it is down to me, and the main worries are, which option will give, or hopefully give, the least side affects for someone still very active and 59, sorry 60 ; ) and that I understand is the 64 dollar question.

I think one of the problems with the earliest stages after diagnosis is the danger of reading and reading and then becoming lost. I don't think you have the right 64 million dollar question here - the most important question is 'which treatment option will give me the best chance of cure, with no need for adjuvant or salvage treatment further down the line?' The side effects are irrelevant if you are dead.

I say this often although I'm not sure that all members understand it - the argument for surgery over RT is often summarised as 'if the surgery doesn't work you can still have RT whereas it is rare to get surgery if RT fails. The fact is, anyone whose primary treatment fails is at a hugely increased risk of developing advanced and ultimately terminal cancer. In other words, men who have needed adjuvant or salvage treatment at the 5 year mark are much less likely to get to 10 years and official remission. So the idea of two bites of the apple is a flawed concept. 

Once you are clear about which option is likely to give you the best chance of cure, then you can start to think about side effects and weigh up your priorities - 'apple A is most likely to cure me but apple B is a close second and I will be back at work more quickly'' is a very personal decision.

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

User
Posted 16 Dec 2015 at 10:43

Morning,

Please feel free to click on my picture and check out my profile. We are of a similar age and Gleason score. I am a bit further down the road having made my treatment decision at the start of the year. Looking back it is scary but once I had made my decision,after much reading and consultation with health care professionals, I felt easier. 

I wish you all the luck in the world with whatever route you choose.

 

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 18 Dec 2015 at 22:24
My oh had surgery at a similar stage to you, so I can give you our perspective on that.

The oh asked the urologist what he would do if he had our set of results. He said he would opt for surgery. its worth asking the question of both your surgeon and your oncologist. They may decline to answer, but it's good to ask.

It sounds like the ED is very important to you. With regard to nerve sparing, my oh had the bulk of his tumour on the right side. The surgeon said that although it appeared the capsule had not been breached, he would not be nerve sparing on that side. However, he did save the nerves on the left. You only need one set. But it would seem from your results that nerve saving is possible on this rule of thumb.

One thing that passed us both by was the fact that figures for ed which were bandied around appeared to be way out once you talk to the ed nurses. Our ed nurse told us that only 10% of men retain the ability to have erections after prostate cancer... Wait for it... UNAIDED. This is the important bit! My oh only heard the 10% bit! The 70% figure we remember hearing is assisted.

There's lots of other ways to help. One side effect of the operation is being alive. Look on it as a trade. You get to be alive, but to get erections you have to take a tablet a day. This will help in a lot of cases. 12 months ago when my husband came away from his first ed meeting, he said he would never put a needle in his bits. He'd rather eat his feet. Last night, he did his first injection by himself, it worked, and he said there was nothing to it. He didn't get on with the vacuum pump, but lots do.

With regard to continence, we have had some issues here. 12 months on, he is still on one pad a day, but just recently it has improved again. It seems to go in stages. He is a farmer with a physical job, so this doesn't help. If he sat down and did nothing, he wouldn't leak much at all. But do bear in mind that the people you hear about on here usually have problems. The vast majority dry up within the 12 months. And again, it's a trade for the side effect of being alive. Anyone can do 12 months.

Try not to look at the side effects. Pretend for a moment that there's no side effects. Which option would you choose? That's probably the right one to go for. After all, being alive is more important.

Good luck

Louise

User
Posted 19 Dec 2015 at 09:40
Originally Posted by: Online Community Member
Originally Posted by: Online Community Member

....... so I suppose it is down to me, and the main worries are, which option will give, or hopefully give, the least side affects for someone still very active and 59, sorry 60 ; ) and that I understand is the 64 dollar question.

I think one of the problems with the earliest stages after diagnosis is the danger of reading and reading and then becoming lost. I don't think you have the right 64 million dollar question here - the most important question is 'which treatment option will give me the best chance of cure, with no need for adjuvant or salvage treatment further down the line?' The side effects are irrelevant if you are dead.

I agree that Lyn provides some excellent advice. However on this occasion I don't fully agree about the 64 million dollar question.

We have seen men on here who have regretted their treatment due to the side effects they have been left with. Some men would rather have quality of life. It's a puely personal choice. It always bothered me when I read the old chestnut "you can't get an erection in the graveyard"....lots of men have and will continue to refuse treatment as the impact on their qol would be too much.

Perhaps there has to be more investment into psychological support about these SE's both pre and post treatment. I for one have had nothing.

I think hc has been informed either treatment provides about the same %age rate of cure. So in my opinion weighing up the side effects of both treatments is extremely important at this stage.

Regarding the increased risk of recurrance for men who have had a follow up treatment I wish I could find out what my real chances were as I would be going straight to my employers to seek release with my pension....as I would want to enjoy my retirement now with my family while I was able...if only.

This isn't having a go at Lyns post as I know she is aware of this. But I felt I had to put another perspective on this issue.

Bri

User
Posted 25 Jan 2016 at 18:23

Welcome home!!

We can't control the winds - but we can adjust our sails
User
Posted 26 Jan 2016 at 19:12

Yippee finally movement or motion, and everything went well, no pain and as good as they get 😄 Another hurdle out the way, thanks. Pat

User
Posted 12 Feb 2016 at 17:31

Well done Happychappy, glad things are sorting themselves out for you.

Your body has been through a great deal so it isn't any wonder that you are still fatigued.
Hopefully that will pass and you'll be back to "normal" in ALL areas of life.

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 12 Feb 2016 at 18:30

Hi HC,

Great news on the continence front!

You may have a few 'accidents' moving forward, but things look very promising and on track for a good recovery.

A word of warning ...... Don't 'overcook' things too early!

You have just had major surgery and your body will need time to recover.

Feeling knackered is quite common as your body is trying to heal itself.

Fitness levels vary from person to person, but maybe you are being just a little ambitious at such an early stage in your recovery?

Rest and a little exercise will be beneficial at the moment.... over the next few weeks you can gradually build up your stamina.

Listen to your body and you should be fine... 

I found that being patient about regaining my fitness paid off in the end...

Best wishes for a swift recovery
Luther

User
Posted 12 Feb 2016 at 19:12

All sounding great HC with all the normal questions and worries and insecurities which actually aren't worth worrying about at this stage. As Luther said , rest relax and get better. At least a month ok. Try to do what we all didn't haha and are now advising on hindsight. Your continence sounds A1 and will remain so. Countryboy99 always told me to be a patient patient and it is sound advice indeed. Nobody on this site wants an erection more than I , or are trying any harder but I am 7 months post- op with zero so far. It's a long haul but we're all going to get there
Take care
Chris

User
Posted 12 Feb 2016 at 20:36
Fantastic news about the continence- you must be over the moon.

So pleased that you are doing so well but try not to get too carried away as you still have some healing to do.

Hope the first PSA test result is good for you too. It's always great to share some good news.

Keep us posted.

Kevan

User
Posted 01 Apr 2016 at 16:04

Lyn,

I understand that there is NICE guidance on the use of 5mg Cialis for individuals with erectile dysfunction who also have benign prostatic hyperplasia, but I'm unable to find any relating to penile rehab following prostatectomy.

There is variability between surgeons as to when daily Cialis should be initiated- and unless the GP is amenable to prescribing, this timing becomes academic when the NICE guidance algorithm next step is referral (the  wait could hardly be described as rapid access) to a specialist service for erectile dysfunction. Yet we are told that early prescribing minimises the likelihood of fibrosis of the corpus cavernosa.  

I haven't seen significant evidence for daily Cialis-  but as my Consultant recommends it, that's good enough for me, I 've read what I can and  I like the idea of doing something rather than nothing.  I note that the following RCT - which seems to give weight to the argument for daily Cialis in the target population some of us come under- was not deemed sufficient to alter the historical approach to ED treatment

http://www.europeanurology.com/article/S0302-2838(13)01054-3/abstract/effects-of-tadalafil-treatment-on-erectile-function-recovery-following-bilateral-nerve-sparing-radical-prostatectomy-a-randomised-placebo-controlled-study-reactt

Their decision may have been influenced by this

http://lib.ajaums.ac.ir/booklist/1-s2.0-S0302283813010919-main.pdf

Viewing the average ED advice ( see page 6 of the following)

http://www.lancsmmg.nhs.uk/wp-content/uploads/sites/3/2013/04/Erectile-Dysfunction-Guideline-Version-1.0.pdf

I detect  reliance on viagra, despite the conceptual benefits of Cialis raised in the above study and comments.  Have a look at the top of page 7 of 17 on the list below for a bombshell! 

https://www.prescqipp.info/drop-list/finish/171-drop-list/2047-bulletin-117-drop-list

I looked into the cutting up of higher dose tablets but was advised that the tablets are film coated and a challenge to achieve consistent  dosing with a fragmented tablet. I guess some will take the approach that at least they're taking something.

 

Edited by member 01 Apr 2016 at 16:07  | Reason: Not specified

User
Posted 01 Apr 2016 at 17:06
Chris, I didn't accept the sildenafil, he was going to prescribe 100mg ? which clearly wasn't a low dose, the consultant explained the reason for a daily 5mg of Cialis was to improve and increase blood flow and hopefully this would kick start things, I will speak next week and hopefully resolve this, but I prefer a consultant urologist advice who hopefully specialises in this problem, rather than an accountant with stethoscope, I will let you know.
User
Posted 01 Apr 2016 at 18:16
Originally Posted by: Online Community Member
Hi Happychappy

Although I would have thought a man would understand how another man felt about loss of function.

Best wishes.

Quite ironic that, the GP who did all my prescriptions is a women,she did at one time work in Urology.

Thanks Chris

User
Posted 01 Apr 2016 at 23:10

Happychappy, your GP is a joke. Absolutely shocking so please, please tell me he is just very old and behind the times. Presumably he also advises his female patients to lay back and think of England.

Walnut, I have been studying the research on ED and regaining EF for 7 years and 4 months. The difficulty sometimes is separating out the starting premise. Some of the links you quote were reviewing whether daily cialis is more effective in producing a useable erection than the 'event' dose or a placebo would be, and whether daily dose made a greater or lesser contribution to achieving natural erections within a given timescale. The EU report was specifically looking at whether daily cialis contributes to the healing of the nerve bundles post-RP, which is a different thing entirely.

Likewise, the reference to page 7. Daily Cialis is not recommended for men with ED 'in most cases' as research shows that event dose cialis or viagra is more effective and / or cheaper. However, 'in most cases' is a glorious phrase and explains the differing CCG stances. The research indicates that daily cialis contributes to the healing of the nerve bundles (NOT to getting an erection) and can therefore be prescribed to a man post-RP or post-RT but - and here is the rub - can't be prescribed to a man on the basis he has ED, it has to be 'for penile rehabilitation' Some CCGs have gone against this, some have a 3 month or 6 month maximum limit while others support it.

In John's case, he had daily Cialis for 4 years, alongside Viagra, Caverject and then Levitra for 'events'. As he no longer has physical ED and any remaining problems are emotional, he doesn't have the Cialis now but does take Levitra or Viagra sometimes if he is lacking confidence. I am thankful that we live in a CCG area with fully-funded andrology services, a superb team of ED nurses and a generous approach to treating youngish men with PCa side effects.

I hope that helps.

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

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User
Posted 16 Dec 2015 at 06:51

morning

and welcome to the best site for information you will ever need

firstly stop using the internet for research, on here you will find nearly all your answers and real life stories

you say been given lots of info, the best info I received was the Tool Kit off this site the info easy to read and understand, it explains what treatment can restrict you from having other treatment, as you have said re surgery I may be wrong but if you go for radiotherapy it affects your chance later of removal

at the moment you will be totally confused and not know what to do, never let anyone force you to take treatment you are not sure/happy with

I cannot guide you on any type of operation/treatment, but one of my work friends had his removed by keyhole surgery and is well on the mend

you need to start taking a relative or friend with you to your meetings, someone to take down notes and they are also an extra set of ears, it gets mind blowing you have a very long road ahead of you and sometimes you may come across a few cliffs

all the info I have been given, copies of my tests, medicines, scans anything is put into a file for future reference

knowing where to turn and ask for help it makes me mad that we are not informed of this site, the specialist nurses are always good to talk with, I have built up a good relationship my GP, check where your local Macmillan support group is, you my feel alone trust me you are not

also depending on treatment I think you can ask for a specific surgeon, but this may be along way off

so remember next visit

pen and paper

questions written down

an extra person or two with you

 

regards

nidge

 

 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 16 Dec 2015 at 08:42
Dear HappYChappy

Welcome to the site.

From what I understand, you have caught the cancer very early, and although there are a few Gleason 4 cells, which are medium aggressive, it looks as though your doctors think that they can treat this and get a cure for you.

You do have a variety of treatment options to choose from and this is the difficult bit, as we expect to be told what to do in these scenarios, but this is not the case with PCa.

My advice would be to continue reading All of the information, see the nurse for a detailed chat and spend a couple of weeks thinking about all of the options available. There will be people on this site who have had experience of all of the options that you mention, so you could home in on specific questions a bit more over the next few weeks.

No one can make the treatment decision for you and this is the tricky bit, but you will find a treatment that seems best for YOU.

Do not rush, there is a lot to take in.

All the best

Alison

Just to add, it sounds like you are getting great levels of treatment service at your hospital which is always a good position to be in.

Edited by member 16 Dec 2015 at 08:44  | Reason: Not specified

User
Posted 16 Dec 2015 at 09:13

Morning Happychappy and welcome.

All good advice above so won't repeat it.

Diagnosed at 71 my husband was Gleason 3+3 with PSA of 5.7 to start with and he went on Active Surveillance for a year. This doesn't suit everyone because we can't all cope with the thought of carting cancer around with us, but if Prostate Cancer is caught early enough it opens up quite a few options for you, the first being - do nothing for now.

John was happy on AS initially and it gave us time to get our heads around the fact that he did actually have cancer, that horrible, frightening word rearing its head. It was only when the PSA crept up to 6.3 Gleason 3+4 that he had to think about treatment and then went for low dose permanent seed Brachytherapy.

Even at the then 71 he was sure that he would not have surgery but that was his choice. With any treatment there will be side effects, even if only initially.
Your consultant emphasised that you WILL lose erectile function and be incontinent.
Now because you were on your own is it possible that he actually said that you MAY lose those functions. Yes they happen at the start of treatment but there will be many on here that will tell you it does improve. Probably not as good as before PCa but not the end of the world.

You don't say whether you have a partner or not but we can be very supportive of our other halves.

Take your time to make a decision and read that Toolkit asap. Make lists of pros and cons, ring the nurses on here for any help and also come back to us. Helping, consoling, supporting - it's what we do best.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 16 Dec 2015 at 09:38

Morning...obviously bad that you have PCa but the results you have provided are by far not the worst. It sounds like all treatment options are open to you which is great but creates that dilemma for you ie what do you go with

I would be surprised,based on your results, that nerve sparing would not be possible. Having said that according to my surgeon there are two schools of thought about the operation...remove everything or remove only what the surgeon feels needs to be removed. As my surgeon told me they can't put anything back. But the crucial thing is to ensure you have a very experienced surgeon in this procedure.

I would do the rounds to discuss each option but ask each specialist what the likely outcomes will be for you. What are their results/stats regarding minimising side effects etc

As others have said don't Google as there is a lot of duff info out there. Stick to reliable sites like this.

One thing for sure you will start to feel better when you know what is happening

All the best

Bri

User
Posted 16 Dec 2015 at 10:43

Morning,

Please feel free to click on my picture and check out my profile. We are of a similar age and Gleason score. I am a bit further down the road having made my treatment decision at the start of the year. Looking back it is scary but once I had made my decision,after much reading and consultation with health care professionals, I felt easier. 

I wish you all the luck in the world with whatever route you choose.

 

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 16 Dec 2015 at 13:16

Thank you all so much for your replies, I have an appointment with an Oncologist at the hospital tonight, he was part of the MDT hope discussed my notes, so hopefully I can get more information.

In answer to Johsan, yes I am married but tried to get through the "processes" without worrying my wife, it was only after the Biopsy that she twigged something was amiss, maybe it was the way I was walking : )

But now she is aware and still annoyed with me for trying to protect her, she has been brilliant, I have so many questions for tonight and will post again as well as look into many profiles to see the journeys others have taken, it is reassuring as I was almost off to Prague for Proton beam therapy as their sales patter is so convincing, so yes I will read up and research all available options and side effects, thank you so much again for your early replies

Happychappy

User
Posted 16 Dec 2015 at 15:10

As a wife I do understand the need for a lot of men to "protect" their other halves but really you do us no favours.

It's as if you exclude us at a very important time of your life - but it's our life too. I know some of you hope that the news will be good and then feel you can mention it now that it's all done and dusted but I'm not surprised you got it in the neck for not telling her.

Now that she knows I hope you have asked her to go with you tonight. As we have already pointed out, a second pair of ears is invaluable and as women are, in general, good at multi tasking, both physically and mentally she may well be able to ask relevant questions while you are still processing what has been said.
I know it works that way for us. John only hears either what he wants to hear or just isn't taking it in.

Good luck tonight. Look forward to hearing how you both got on.

We can't control the winds - but we can adjust our sails
User
Posted 16 Dec 2015 at 17:28

Hi Happychappy,

There is no one treatment that is best for all men. Much depends on the diagnosis of an individual, the skill and experience of the person(s) giving the treatment along with how an individual regards various treatments and potential side effects that can vary from one person to another. Early diagnosis though preferable, does often mean that a man has to choose between more options which in itself can make this more difficult. As has been mentioned, for some men Active Surveillance (AS) can be a good option, at least in the short term as it can defer side effects of otherwise having early treatment if or until primary treatment is considered advisable. This also gives a man more time to consider his options. However, it is most important that the individual is carefully monitored and timely action is taken so the opportunity of best chance of cure is not missed. It also means that men have to live meanwhile with knowledge that they have cancer possibly growing within them, something that not all men can accept.

When it comes to surgery, the most important consideration is the skill and experience of the surgeon rather than the type of surgery, although there are sometimes circumstances where one method may be considered preferable for a particular patient. From a patient's perspective, healing time is shorter with robotic surgery.

As regards radiation treatment, one of the two forms of Brachytherapy seem to be gaining in popularity, sometimes augmented by External Beam though External Beam delivered by various machines is the majority form of radiation treatment for PCa. In the US and now becoming available in some mainland European countries and further afield is Proton beam. It is particularly good for treating certain types of cancer, in the head for example and in theory should result in less collateral damage and reduced side effects for PCa but the jury is still out on how much advantage it offers over some of the increasingly more refined Photon machines used for PCa.

There are other primary treatment possibilities that may be suitable, HIFU (High Intensity Focal Ultrasound), Cryotherapy, or Nanoknife though the first two are not widely available in the UK and Nanoknife for PCa not at all to the best of my knowledge now that UCLH have ended their trial so for this treatment, which is regarded as experimental it would mean going to Germany or possibly elsewhere.

A lot of pondering!

I

Edited by member 16 Dec 2015 at 19:41  | Reason: Not specified

Barry
User
Posted 16 Dec 2015 at 19:18

Hi Happy Chappy,hope your meeting goes well tonight.

Like you I was diagnosed PCa confined to my prostate, aggressive but treatable and it leaves you thinking way out of the box until you rein it in and do your homework, see what treatment is available and then make a decision based on what you know.

My PSA at diagnosis was 63 and by the beginning of Sept had fallen to 0.5 (HT stopped it in it's tracks)

I could not have my prostate removed so started Hormone therapy Feb this year and due to circumstances beyond my control started Radio therapy mid September, 37 sessions completed without too much fuss. Just HT to continue for next 14 months.To me it has been not too much of a problem and consider that I have beaten this disease but will see in January when I have next PSA toast and see consultant.

I cannot say much about the surgery side of things as it did not apply to me and can only say that HT and RT were not too invasive on my life. Having said that I get constant hot flushes day and night so one moment I am wrapped up and the next I am stripped off cooling down.

In between HT and RT I had a TURP procedure to help with the constant weeing at night but in my case it did not work so still get up 7/8 times each night.

You will find it helpful to stay in control with appointments etc by phoning each department to chase them up rather than waiting for them to get around to posting letters out to you when it gets to the top of their in tray. The NHS is a bit cumbersome to be quick.

The other thing is keep talking with your OH as this stops her worrying by being kept in the loop and sometimes if you are concerned she may reassure you with words of comfort.

Ask any questions on this site as nothing is out of bounds and there will always be someone that has been there and done that who will be able to give you the answers that you are looking for.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint.

User
Posted 16 Dec 2015 at 20:10

Hi, thanks again for the replies, just got back from the Oncology Consultant, as expected he fully explained what radiotherapy was available and how in his opinion there was no difference between going down the surgery or radiotherapy route, just the side effects would or could be different.

One surprise was, I have a lot of pain in my kidney area and a burning sensation in my groin, testes and penis, this has gone on for around five weeks, I mentioned this initially to the surgery consultant who dismissed it, but then my wife mentioned it again tonight and the oncologist put up the MRI of my kidney which shows a significant cyst, he was quite surprised it had not been mentioned, but didn't know if the cyst could cause the symptoms, so another journey?

He was very good, very thorough, and said the radiotherapy course would start with hormone treatment and then be either 20 weeks or 37 weeks depending on the planning, but basically four or eight weeks of daily visits but he was hopefully it would be a success, so back to me or us to make a decision which route to go down, the Oncologist has performed over 3000 prostate treatments, so pretty experienced, now need to speak to the surgeon about nerve sparing, the risks of leaving cells due to the nerves being left, as well as his experience with robotic laparoscopic procedures, but it appears that at this hospital two surgeons perform the robotic procedure, maybe to increase their experience ?

So many questions, but now the wife is heavily involved and asking questions, so big mistake not to involve her earlier, lesson learnt Johsan ; ) 40 years married but never to old to learn.

User
Posted 16 Dec 2015 at 22:36

Well I'm slightly ahead of you at 46 years so have had a bit more time to "train" him !!

Glad the wife went with you. I think for some of us the mothering/organising instinct takes over and we want to bustle around getting things done.

Sounds like your Oncologist is on the ball. #

Good luck with the decisions, just don't rush into any of it.

You have to live with the results of your choice for the rest of your life so once your choice is made be happy with it and convinced it's the right one for you both.

We can't control the winds - but we can adjust our sails
User
Posted 16 Dec 2015 at 22:40

It is apparent from many postings on this forum that the ladies are often heavily involved in supporting their own men and sometimes other men too, so a good idea to have your wife actively on your case.

If the cancer is well contained within the capsule, as it may well be in your case, surgery or RT (the latter often in combination with HT), has a good chance of eradicating the cancer. However, in cases where it is breaching the capsule, RT can extend further than the surgeon can cut. In some cases surgery is given a chance and in need can be followed up with RT but this does add to the potential side effects overall.

One other point, if you still have a Prostate, even a radiated one, there is still the possibility that cancer may grow again in it. This happened to me.

Good luck and do let us know what you decide and how it goes even if you decide to go on AS for a time.

Barry
User
Posted 17 Dec 2015 at 15:56

Hi Barry/everyone

I don't feel I can cope with the active surveillance option, I'm not that brave.

I rang to speak to the surgical consultant but got through to his secretary as he is in theatre, i said I would like to speak with the consultant as I am leaning towards the surgery route, I wanted to know the answer to a few questions, such as the surgeons experience of the robotic laparoscopic technique, how many of these operations he has carried out and his success rates, whether nerve sparing was an option or was there a reason that this may not be possible and the effects etc, I have just had a call back asking me to go to his clinic New Year's Eve as he can operate on the 11th ? Squeaky bum time !!

Last night I was reading up on so many articles on the sites toolbox, really well put together publications, but still even now, so undecided and feeling like I'm running headlong into something I don't fully understand, or maybe its that I am a very analytical person and my job makes me very decisive, and this disease calls for knowledge, and there does not seem to be a right or wrong answer or that anyone other than me will make the decision, so I suppose it is down to me, and the main worries are, which option will give, or hopefully give, the least side affects for someone still very active and 59, sorry 60 ; ) and that I understand is the 64 dollar question ! Thanks for your replies, I have read so many people's stories and experiences and learnt so much, and what a brilliant site.

User
Posted 17 Dec 2015 at 16:18

Hi
I was going to write a huge post about the ups and downs of treatments etc. You could read my profile. You are stuck in that place that most of us were in -- Which option shall I take ?? It's mind destroying isn't it. I wouldn't want to advise. Whatever u pick unfortunately it's a life changer one way or another. I hope you can decide and then just sit easy with it.
I wanted to post mainly to say good luck , and we are all here for you.
Chris

User
Posted 17 Dec 2015 at 16:33

Hi Happychappy,

Like all the previous posters, I can't ( wont ) advise you as to what route and treatment path you should take......

I was offered Da Vinci surgery and chose to go down that path ( check out my profile ) 

Although I have no regrets, and am to date deemed to be free of PCa, there is always the possibility of biochemical re-occurrence at any time in the future.....

Perhaps I  have been lucky in one way, but unlucky in other ways, as I still suffer from leakage problems and also ED problems.. There are many others who have had surgery and are dry within a few months, so everyone differs in their recovery times and the severity of their side effects.

For me, these side effects are manageable, but still depressing at times......

There are no guarantees whichever route you choose to take, so take your time and think things through carefully......listen to the experts and follow your gut feeling...

I wish you well in making your choice, and hope you have successful outcome whatever route you choose..

Luther

Edited by member 17 Dec 2015 at 16:43  | Reason: Not specified

User
Posted 17 Dec 2015 at 18:45

Originally Posted by: Online Community Member

....... so I suppose it is down to me, and the main worries are, which option will give, or hopefully give, the least side affects for someone still very active and 59, sorry 60 ; ) and that I understand is the 64 dollar question.

I think one of the problems with the earliest stages after diagnosis is the danger of reading and reading and then becoming lost. I don't think you have the right 64 million dollar question here - the most important question is 'which treatment option will give me the best chance of cure, with no need for adjuvant or salvage treatment further down the line?' The side effects are irrelevant if you are dead.

I say this often although I'm not sure that all members understand it - the argument for surgery over RT is often summarised as 'if the surgery doesn't work you can still have RT whereas it is rare to get surgery if RT fails. The fact is, anyone whose primary treatment fails is at a hugely increased risk of developing advanced and ultimately terminal cancer. In other words, men who have needed adjuvant or salvage treatment at the 5 year mark are much less likely to get to 10 years and official remission. So the idea of two bites of the apple is a flawed concept. 

Once you are clear about which option is likely to give you the best chance of cure, then you can start to think about side effects and weigh up your priorities - 'apple A is most likely to cure me but apple B is a close second and I will be back at work more quickly'' is a very personal decision.

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

User
Posted 18 Dec 2015 at 22:24
My oh had surgery at a similar stage to you, so I can give you our perspective on that.

The oh asked the urologist what he would do if he had our set of results. He said he would opt for surgery. its worth asking the question of both your surgeon and your oncologist. They may decline to answer, but it's good to ask.

It sounds like the ED is very important to you. With regard to nerve sparing, my oh had the bulk of his tumour on the right side. The surgeon said that although it appeared the capsule had not been breached, he would not be nerve sparing on that side. However, he did save the nerves on the left. You only need one set. But it would seem from your results that nerve saving is possible on this rule of thumb.

One thing that passed us both by was the fact that figures for ed which were bandied around appeared to be way out once you talk to the ed nurses. Our ed nurse told us that only 10% of men retain the ability to have erections after prostate cancer... Wait for it... UNAIDED. This is the important bit! My oh only heard the 10% bit! The 70% figure we remember hearing is assisted.

There's lots of other ways to help. One side effect of the operation is being alive. Look on it as a trade. You get to be alive, but to get erections you have to take a tablet a day. This will help in a lot of cases. 12 months ago when my husband came away from his first ed meeting, he said he would never put a needle in his bits. He'd rather eat his feet. Last night, he did his first injection by himself, it worked, and he said there was nothing to it. He didn't get on with the vacuum pump, but lots do.

With regard to continence, we have had some issues here. 12 months on, he is still on one pad a day, but just recently it has improved again. It seems to go in stages. He is a farmer with a physical job, so this doesn't help. If he sat down and did nothing, he wouldn't leak much at all. But do bear in mind that the people you hear about on here usually have problems. The vast majority dry up within the 12 months. And again, it's a trade for the side effect of being alive. Anyone can do 12 months.

Try not to look at the side effects. Pretend for a moment that there's no side effects. Which option would you choose? That's probably the right one to go for. After all, being alive is more important.

Good luck

Louise

User
Posted 19 Dec 2015 at 09:40
Originally Posted by: Online Community Member
Originally Posted by: Online Community Member

....... so I suppose it is down to me, and the main worries are, which option will give, or hopefully give, the least side affects for someone still very active and 59, sorry 60 ; ) and that I understand is the 64 dollar question.

I think one of the problems with the earliest stages after diagnosis is the danger of reading and reading and then becoming lost. I don't think you have the right 64 million dollar question here - the most important question is 'which treatment option will give me the best chance of cure, with no need for adjuvant or salvage treatment further down the line?' The side effects are irrelevant if you are dead.

I agree that Lyn provides some excellent advice. However on this occasion I don't fully agree about the 64 million dollar question.

We have seen men on here who have regretted their treatment due to the side effects they have been left with. Some men would rather have quality of life. It's a puely personal choice. It always bothered me when I read the old chestnut "you can't get an erection in the graveyard"....lots of men have and will continue to refuse treatment as the impact on their qol would be too much.

Perhaps there has to be more investment into psychological support about these SE's both pre and post treatment. I for one have had nothing.

I think hc has been informed either treatment provides about the same %age rate of cure. So in my opinion weighing up the side effects of both treatments is extremely important at this stage.

Regarding the increased risk of recurrance for men who have had a follow up treatment I wish I could find out what my real chances were as I would be going straight to my employers to seek release with my pension....as I would want to enjoy my retirement now with my family while I was able...if only.

This isn't having a go at Lyns post as I know she is aware of this. But I felt I had to put another perspective on this issue.

Bri

User
Posted 31 Dec 2015 at 17:55

Hi again

Thank you for all your responses,

I have now moved on to today seeing the surgeon who has agreed (as they never recommend) to carry out surgery, he is looking to do a radical prostatectomy week after next.

From all accounts and reading the reports by the British Association of Urological Surgeons, it appears that the best outcomes from this disease is to be treated by a urology surgeon with significant experience of robotic prostatectomy, it appears the old adage of "The more you practise, the luckier you get" may well be true and is supported by the urologist association.

Today I asked the surgeon how many robotic assisted operations he had completed and what his success rate or outcomes had been and what complications if any his patients had experienced?

The Da Vinci machine has only been in situ in this hospital for around 16 months, the surgeon teams up with another surgeon to complete the procedure and have completed around 50 operations between them, this appears extremely low, the surgeon has said they are slowly reducing the operation time as they become more experienced ?

He expects recovery time to be a two to three night stay, and does not expect any likelyhood of erectile function, so not to expect any ? I asked about nerve sparing, but he said although they would look at this on the side where the disease was minimal, however, I should not expect any Erectile function and ensure that I understand that this was the future and not to expect any ?

There was no discussion of ED clinic. Regards Contence, he hoped any problems would be short term, but again this could be a long term issue ? Just to clarify, the ED side is not forefront of my thinking, removal of the disease and surviving by the use of the most experienced surgical team is my priority.

In total, I did not feel confident that the surgeon is significantly experienced, and feel he is still on an upwards learning curve, maybe it was his Bedside manner, but roughly 25 operations using robotics does not fill me with confidence, therefore I called in to my GP to ask for a referral to a "centre of excellence" if one exists where I can be assured the surgical team have significant experience of robotically assisted prostatectomies, my GP did not know which hospitals or surgeons there are either in my area or if such centres exist, he has said to contact my surgeon and ask ? hence back to the Internet trying to find hospitals and surgeons who have many operations under their belt such as the Royal Marsden, but as I am Midlands based.

I would be grateful for any advice or suggestions as where to look to find if such hospitals or centres actually which operates using the robotic process and any feedback would be gratefully received.

Am I expecting too much in trying to find such an expert and is 25 procedures enough for this type of surgery ? Unfortunately the British Association of Urological Surgeons data base is not kept up to date and does not list all surgeons and their experience.

User
Posted 01 Jan 2016 at 02:39

Hi Happychappy,

You seem to have settled on surgery and there are very experienced surgeons at the London Teaching Hospitals. I have read good reports of The Royal Marsden and Guys and you could contact others too to ascertain experience and skills of surgeons. There are major hospitals you could contact in Birmingham and Leeds among others who may have a lot of experience with robotic surgery but certainly with conventional open surgery. The latter does mean longer healing time but some surgeons prefer it to robotic with eventual outcomes similar but your choice.

You really need to contact hospitals direct if your GP cannot help you, as a few men that may relate experiences of hospitals, good or bad may not necessarily reflect the overall performance of individual surgeons. It also has to be remembered that some prostates pose greater difficulty to remove with good effect than others, so some surgeons prefer to do the easier ones which makes their overall record look better.

Barry
User
Posted 01 Jan 2016 at 03:08

Happychappy, why are you so intent on robotic surgery?

As for your question about whether 25 is enough, he says has done 50 - doing them together doesn't usually mean they have done half each. The well known surgeons have done in the thousands though - but I guess they all had to practice on people in their early days. The guy who did John's op 6 years ago had operated on my dad 14 years ago as a guinea pig for the (what was then new) nerve-sparing technique he had just been to America to learn! 

Edited by member 01 Jan 2016 at 03:11  | Reason: Not specified

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

User
Posted 01 Jan 2016 at 11:38

Thanks Lynn and Barry

The surgeon explained both himself and a colleague do the robotics and share the operations, helping or assisting the other?

Lynn I am not intent on robotics, just that I feel more comfortable with surgery in the hope that everything is contained, there are no positive margins and everything is gone ? I know its a bit simplistic and I am prepared for the side effects, as you pointed out in an earlier post, its the living first and the rest can then follow.

The surgeon I have seen has only discussed robotic surgery, he didn't dismiss a normal laparoscopic or open surgery, just if I go for surgery this was the type of surgery he would do?

As I only get the one opportunity to try and get it right, I am looking towards finding a very experienced surgeon or centre, I would prefer not to have to travel but if this has the best outcome then that is not an issue

I have been looking at the Marsden and the Cambridge University cancer centre, which appears to carry out very many procedures and looking at the literature on the BAUS website they suggest or recommend that centres should perform 150+ procedures a year, likewise they give guidance on how many procedures a surgeon may take to be proficient ?

I know the medical world needs guinea pigs for surgeons to gain experience on and maybe I am being selfish, but I simply want to give myself the best chance.

User
Posted 01 Jan 2016 at 12:18
Hi Happychappy

This link list the top ten but is rather old but maybe of some help. I picked my surgeon from this who practices in Birmingham with no regrets.

Good Luck

Roy

http://www.dailymail.co.uk/health/article-1325743/Who-best-surgeons-treating-prostate-cancer.html

User
Posted 01 Jan 2016 at 15:02

Capitalman also chose from this list - his life has been devastated and the aftercare was shocking so choose wisely. Sometimes the ones who get on the top lists are simply the ones who can afford big marketing budgets.

Happychappy, once they have bought a machine there is probably a lot of pressure to justify it via frequent use. Is it worth asking your surgeon how many normal LRPs he has done and whether you can have that instead?

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

User
Posted 01 Jan 2016 at 16:26

Lyn

Thank you, I have that on my list for Monday, I know they are under pressure to use it as their original press release was they will perform over 200 a year, they machine was gifted to them from a marvellous benefactor who had a close relative suffering from PCA, also the surgeon wants to operate to meet the NHS target of 64 days ? I should have asked yesterday but unfortunately I only thought about it after as I mulling over his responses.

User
Posted 01 Jan 2016 at 17:34

Out of interest , how do they teach new surgeons coming up through the ranks to do these operations ? I made it very clear to my surgeon that I didn't want any students practicing on me , because I was terrified of ED ( which i have anyway ) , yet to fill the consent form in properly I had to agree to students being taught . I HAD to tick the box that said it was a teaching hospital etc. I'm just interested as these students have to learn SOMEWHERE I suppose

Edited by member 01 Jan 2016 at 17:35  | Reason: Not specified

User
Posted 01 Jan 2016 at 18:03
Happychappy.

Please pm me, or check your inbox. I understand you are seeing mr T (?) tomorrow - I'll keep checking my email tonight

Louise

User
Posted 01 Jan 2016 at 21:14

All the surgeons who do robotic have considerable previous experience with open surgery. Indeed it has happened, though thankfully rarely, that there has been a problem with the robot or it has become apparent during the course of surgery that open would be preferable for the particular patient. In these situations the fall back position is to continue with open. There is of course a first time for everything and maybe surgeons when they first start do only part of of the operation and under instruction, gradually doing more of it. It seems to me that operating on dead bodies might be helpful but I don't know if this is done. When highly proficient, it's a question of the surgeon adapting to use a robot. I did see this demonstrated some time ago, the surgeon practicing on a special dummy but don't know if this is now part of the training. It would be interesting to find out!

Don't be put off by any of this, surgeons in the UK are generally pretty competent but like any other group some are better than others.

Barry
User
Posted 22 Jan 2016 at 15:24

Getting ready for robotic surgery tomorrow morning, very nervous (understatement of the century) packing everything but the kitchen sink, all in extra large for any swelling, and then hopefully out by Sunday evening and the start of phase 2 ?

User
Posted 22 Jan 2016 at 15:45
Happychappy

All the best for tomorrow, I don't recall any swelling or any real long term pain, take it easy but keep mobile.

Thanks Chris

User
Posted 22 Jan 2016 at 16:11

All the very best to you .
It all happens very very quickly when you get in there - no time to panic
Hear from you soon
Chris

User
Posted 22 Jan 2016 at 17:04

Good luck for a very positive, long term outcome for you Happychappy.

Your wife will be there nagging and alternately mollycoddling you I'm sure.

Do as you are told by your care team, don't rush anything, and you'll be fine

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 22 Jan 2016 at 17:09

Wishing you all the very best!

I'm 9 months ahead of you, and I have no regrets whatsoever! :-))

User
Posted 25 Jan 2016 at 11:40

Thanks all, came out last night, all went well but will get the results in 6 weeks, the surgeon did nerve sparing on one side only and took a wide margin on the other. Just trying to get used to the catheter which is in for two weeks. Pain is ok, more tummy discomfort around the wounds.

All in all an interesting experience and funny how my views changed as Lyn pointed out, firstly ED and continence were important then as I finally realised this is really serious, I then viewed living as the ultimate priority.

The surgeon was as confident as surgeons go, in so far as he said, subject to pathology, he felt this surgery should be all that is required, but we shall see, my only regret was having to go private. I know this was down to me and reading up so much and everything pointed to finding the best surgeon one can, best being a surgeon with lots of robotic experience, and this chap had done over 500 and he gave confidence in everything he said, so although I have paid my taxes and NI for 45 years, I felt this money well spent.

Now to wait for the catheter to go and see how well the continence goes, I worked on pelvic floor for the month prior to surgery, but I imagine that's a new journey. Already started cranberry juice, lots of water and diet, thanks to the posters, and all the information on this marvellous website, thanks again : )

User
Posted 25 Jan 2016 at 12:42
Happychappy

Good to hear all went well, just one tip no straining to pass that first motion.

Thanks Chris

User
Posted 25 Jan 2016 at 13:11

Hi Chris, thanks, yes waiting for the first : ) funny how some things become important, trying to keep a light diet, soups and things, but I'm sure my day will come 😄

User
Posted 25 Jan 2016 at 13:45

All the very best mate. Well done and wishing pronto recovery for you. Keep posting !
Chris

User
Posted 25 Jan 2016 at 18:23

Welcome home!!

We can't control the winds - but we can adjust our sails
User
Posted 25 Jan 2016 at 19:44
Originally Posted by: Online Community Member
Happychappy

Good to hear all went well, just one tip no straining to pass that first motion.

Thanks Chris

Chris were you prescribed or did you take any stool softners such as Ducloease or Movocol, more of a just in case solution, I know it is normally a couple or three days before the bowels start to work again, just wondering if they are worth considering or maybe not a problem, interested to see how other people dealt with it ?

Thanks

User
Posted 25 Jan 2016 at 20:09

I was sent home with Magnesium Hydroxide liquid which I took as instructed until it happened. The relief haha. Yes it is best to take something for the first month , but only as required or you can become dehydrated
Chris

User
Posted 25 Jan 2016 at 21:18
Happychappy

I was actually refused any laxatives in Hospital, when I got home I started on senna, but they were slow to work. Our hospital now start guys on movicol before them come in for the op.

Thanks Chris

User
Posted 26 Jan 2016 at 19:12

Yippee finally movement or motion, and everything went well, no pain and as good as they get 😄 Another hurdle out the way, thanks. Pat

User
Posted 26 Jan 2016 at 23:03

Well good to have that out of the way! Remember you have had a major op so don't do too much too soon!

Barry
User
Posted 27 Jan 2016 at 19:38

Thanks Barry

Yes I feel like I've been hit by a train, but better each day taking things steady and making sure I drink plenty, but then emptying the leg bag every hour or less, unfortunately I only received a small volume bag with the stock not being delivered till Friday, but no rush as I'm not going anywhere.

User
Posted 12 Feb 2016 at 16:22

Hi

Just a quick update, finally had the catheter out yesterday which was almost three weeks post op, really pleased with the result, no leakage and good control without need for pads which I was dreading but resigned too, so wondering if this will continue?

I was dry all day with no accidents, and all night, however as I had to remain at hospital until I had been to the loo four times using the flow meter followed by a bladder scan, I really drank a fair bit, and the trade off was all night long I was up every hour going to the loo, so a very poor nights sleep, urine is slightly pink to start with and at the end, also stinging a fair bit, but son goes off, I imagine this is normal as the huge great plastic pipe is now out ?

Today has been better, three or four glasses of water this morning and able to control the urge until I go to the loo, I walked a mile today and felt really knackered, I hoped I would have more stamina, but weak as a kitten, so maybe smaller walks and a little more often ? How have other people managed with fatigue three weeks post op, am I expecting too much

I have a follow up with the consultant beginning of March, but need to have a PSA test before hand, nothing happening on the ED front, but pleased to get the catheter out as I really struggled with discomfort with this, but at least things are moving forward, although still feeling a little emotional and notice every other advert seems to be about cancer charities or Tenna pads 😟

User
Posted 12 Feb 2016 at 17:31

Well done Happychappy, glad things are sorting themselves out for you.

Your body has been through a great deal so it isn't any wonder that you are still fatigued.
Hopefully that will pass and you'll be back to "normal" in ALL areas of life.

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 12 Feb 2016 at 18:30

Hi HC,

Great news on the continence front!

You may have a few 'accidents' moving forward, but things look very promising and on track for a good recovery.

A word of warning ...... Don't 'overcook' things too early!

You have just had major surgery and your body will need time to recover.

Feeling knackered is quite common as your body is trying to heal itself.

Fitness levels vary from person to person, but maybe you are being just a little ambitious at such an early stage in your recovery?

Rest and a little exercise will be beneficial at the moment.... over the next few weeks you can gradually build up your stamina.

Listen to your body and you should be fine... 

I found that being patient about regaining my fitness paid off in the end...

Best wishes for a swift recovery
Luther

User
Posted 12 Feb 2016 at 19:12

All sounding great HC with all the normal questions and worries and insecurities which actually aren't worth worrying about at this stage. As Luther said , rest relax and get better. At least a month ok. Try to do what we all didn't haha and are now advising on hindsight. Your continence sounds A1 and will remain so. Countryboy99 always told me to be a patient patient and it is sound advice indeed. Nobody on this site wants an erection more than I , or are trying any harder but I am 7 months post- op with zero so far. It's a long haul but we're all going to get there
Take care
Chris

User
Posted 12 Feb 2016 at 20:36
Fantastic news about the continence- you must be over the moon.

So pleased that you are doing so well but try not to get too carried away as you still have some healing to do.

Hope the first PSA test result is good for you too. It's always great to share some good news.

Keep us posted.

Kevan

 
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