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Waiting for surgery but having second thoughts.

User
Posted 11 Apr 2019 at 09:51

After a well man clinic, at the age of 60, my psa was found to be 4.8. With no symptoms the decision was made to watch and wait and 4 years later it had gradually risen to 6.6.  Eventually referred for mpMRI which showed ‘abnormalities’’. The following Trus biopsy gave a Gleason 7 (3+4) and was told 100% of the samples on one side we’re cancerous and 30% the other. As a fit 64 year old, with no symptoms whatsoever, this news came as a real shock me and my wife. The Urologist suggested radiotherapy or robotic surgery, but recommended surgery as with RT the cancer could return.  As I can’t imagine with living with cancer cells in my body, I’ve agreed to have the surgery and I’m now 3 weeks into the pathway.

I probably shouldn’t have done this but I’ve just been reading the forum and seeing the reports of post surgery issues (incontinence, ED, shorter penis etc). I’m now having concerns that I’ve made the right decision, but equally I do want the cancer cells gone if possible. Any advice or reassurances gratefully received.

 

 

User
Posted 11 Apr 2019 at 13:39
Hi Neil,

You are really asking the $64,000 question to which there is no real answer. So, two questions for you:

Have you ordered or downloaded the ‘Toolkit’ comprehensive information pack from this website?

Have you discussed an alternative treatment plan with an oncologist? Urologists tend to favour their own discipline - surgery - and recurrence can and sometimes does recur after prostatectomy, as many correspondents here will attest to.

Best of luck, whatever you choose. Let us know how you get on.

Cheers, John.

User
Posted 11 Apr 2019 at 18:47
Evening Neil,

Only you can make your decision as only you will live with the consequences, and hopefully for a long long time!

I wonder, what made you make your initial treatment choice in the first place?

And then, is it really a few stories here of ED, incontinence and a shorter penis that has caused doubts? So you weren't worried about the possibility of death?

At my RRP it was explained to me that there was a 1 in 400 chance of death on the table. Make sure you are not number 400. More likely then, there is a chance of not death.

Incontinence - is a possibility. Equally, no loss of incontinence is a possibility.

Erectile disfunction - is a possibility. Complete loss, partial loss, intermittent loss. Oh, and don't forget the possibility of no loss. You may be as rampant as before.

Statistics of so many thousands of people who have had what you may be contemplating are a guide, sure. But the only statistic that matters to you is your statistic.

When you make your choice make it the best choice on the information you have at the time, and then don't look back. No point.

You will read of men who chose surgery, as that was apparently the best option for them on the information available at the time. Then on having surgery their cancer had spread but did not show on an MRI, and they then express regrets.

I was T2a on diagnosis, sadly upgraded to T3 on pathology. Thank goodness I made a choice quickly and had its out when I did.

Have a look at my profile, and you will see how successful I and my recovery has been. I have no regrets.

BUT, it may not be the same for you.

You are at the worst stage, where all have been with PCa.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 11 Apr 2019 at 21:14

Bollinge - Evening John, thanks for the reply. I tried to download the Toolkit but just came up with ‘page not available’, I think the info is available elsewhere on this site so I’ll take a look.  I haven’t spoken to an oncologist but have read plenty about the other treatments available. I suppose my thinking about surgery is if it’s contained and they remove it all then it’s gone. I might be over simplifying things but RT just doesn’t seem quite that certain to me.

User
Posted 11 Apr 2019 at 21:55

Countryboy99  - Evening Dave, thanks for the reply. I suppose my initial treatment choice of surgery was made after I heard about an old friend whose first symptom was back pain - he’d gone within the year. My thinking was that removing the prostate, with all the cancer cells contained within it, has to be more reliable than other therapies that might not zap them all.  The risks and possible side affects of surgery are a real worry to me but the thought of going through RT and having the cancer come back is a bigger concern.  Really pleased your recovery has gone so well, hope for us all.

User
Posted 11 Apr 2019 at 22:14
Neil, RT and RP have almost identical long-term survival rates, so there’s little to choose between them from that perspective. Sometimes there are medical reasons that one is recommended over the other (eg in my own case the MDT strongly recommended RT because my higher than expected PSA indicated a chance of undetectable spread into the lymph nodes); other times it’s a genuine choice. I preferred RT right from the outset so was happy that this was the recommended treatment.

I really would talk to an oncologist and hear the RT side of treatment options.

Very best wishes,

Chris

User
Posted 11 Apr 2019 at 22:56

Chris - Many thanks for the info. I have a few weeks before my appointment so have time to look into all options.

User
Posted 11 Apr 2019 at 23:05
It often works the other way round. Where the cancer is thought to be close to the edge, the MDT May feel that surgery has a risk of leaving some cancer behind and RT will be able to get it all. Some surgeons would refuse to operate on a man with your diagnosis so it is good that you have been offered both routes. Has the surgeon said whether or not s/he intends to attempt nerve-sparing?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Apr 2019 at 23:30

LynEyre - Thanks for the info. I have only seen my urologist so far, he was the one that suggested the two options, but both him and the Macmillan nurse recommended surgery for my case. My meeting with the surgeon isn’t for a few weeks yet, I’ll definitely ask him about the nerve sparing. I’m intrigued now, why wouldn’t a surgeon want to operate on a man with my diagnosis?

User
Posted 11 Apr 2019 at 23:34
Ignore me - I misread your post as “100% of each core was cancerous” rather than “100% of the cores were cancerous”

Is your urologist not going to be the surgeon?

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

User
Posted 11 Apr 2019 at 23:43

Got me worried for a minute. I’m being sent to another hospital for the robotic surgery as my local urologist doesn’t do it. I rather glad really, the other hospital has a very good reputation for the procedure. 

User
Posted 12 Apr 2019 at 00:22
To add to the mix,

But bear in mind my experience was 2013.

A urologist - can only recommend a urological solution. That is their specialism. It's all they know

An oncologist can only/will only recommend an oncological solution. That is their specialism. It's al they know.

After diagnosis, the surgeon I first spoke to Mister ONLYOPENSURGERYOPTION (who could only offer open surgery) at that NHST offered open surgery.

I asked for a referral to a NHST that had Robotic option. He made it.

On the day of my RRP the open surgery surgeon attended on his day off to see the fun. I met him later, and he said that if he had had the option to offer me a RRP, he would have suggested it. But the option was no then available in Bucks.

The decision is yours alone.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 12 Apr 2019 at 00:24

Hi Neil,

All the best, pure coincidence I was updating my profile and had a quick peruse of posts. I've not been on forum for ages.    Feel free to view my profile (which includes info on my brother, he choose RT (he was offered Surgery as an option at 70 yo)). 

Key points =  I was dry after 24 hrs.  Non Nerve Sparing.    ED was a 'challenge' however after +3 yrs quite acceptable and still improving very very slowing. I'm now 4 yrs post op.   The  'PDE5 variants',  had little or no positive  effect, just a 24 hr hangover !, I gave up on them after 6 months.  I take zero meds,

Obviously no semen, which in itself takes getting used to for both partners.   Climacturia very occasionally , (yes I had to  google it !) and spontaneous erections I don't expect, (ie plenty of constant stimulation required) .   

For some reason  I'm  on quarterly PSA testing, although was 6 monthly, however I don't say anything.   Currently 0.02, it has been 'up' to this before and then 0.01.      Worries wife a lot more than me, as 'testing' time comes around.   I hope this helps.           

My birthday at 64 the other day, my older sister phoned me and then reminded me I'm older than our dad had lived (he died PCa at 63).  That puts things very much in perspective. I'm so fortunate.        

     

 

 

User
Posted 12 Apr 2019 at 00:58

Dave - I had no idea I would be sent me to another hospital for the robotic surgery but I’m quite relieved, they do loads of these procedures and are highly regarded in the area. Without the big incision of open surgery, I’m hoping to be back on the golf course before the season ends - fingered crossed!

User
Posted 12 Apr 2019 at 01:09

robgsr - Glad your procedure went well and you're now out of the woods. To be honest, if the surgeon says he needs to take the nerves I’m not going to object, my life is more important. Like you, I’ve already outlived my father (lung cancer at 63) as you say it does put things into perspective. 

User
Posted 12 Apr 2019 at 02:03
You can order a hard copy of the Toolkit by post. It is packed with useful information about this disease.

Cheers, John.

User
Posted 12 Apr 2019 at 08:15

Thanks John, just placed the order for the Toolkit.

User
Posted 12 Apr 2019 at 10:16

My diagnosis was very similar to yours and treatment options were the same, not that I can say one way or the other is right for you, but I chose surgery and happy with the decision, continent and starting to regain erectile function 7 months post op. I just wanted the cancer out of my body, also glad I chose surgery as the cancer turned out to the aggressive type and final gleason was 8, I had LRP with nerve sparing. Hope all goes well for you what ever you decide  

User
Posted 12 Apr 2019 at 12:36

 

"urologist - can only recommend a urological solution. That is their specialism. It's all they know"

Not always the case Dave, my Surgeon said he would remove my Prostate if I was set on it but said he was doubtful he could remove all the cancer so he recommended RT.  In fact he personally introduced me to an Oncologist who was in a nearby office.   There have been other cases too where Urologists have recommended RT over surgery for various reasons.  It is right though that where surgery is a good option Surgeons will recommend their discipline, especially where this treatment is backed by the MDT.

Edited by member 12 Apr 2019 at 12:39  | Reason: Not specified

Barry
User
Posted 12 Apr 2019 at 13:01

Blighty - That’s great news, glad it all went so well for you. I’m of the same mind, I just want the cancer out my body now.

User
Posted 12 Apr 2019 at 18:07

blimey.  a lot in common.  

I was digging garden and DIY, after about 3 months. minimal scaring.  However .  this is a major op. extensive damage . etc.  I was only in overnight.  Golf .. swing can be quite intense. take it very easy.   I still get quite extensive groin aches, the bladder seems to think it's full when it isn't. However flow is far better than it's been for years and I can hold 300ml plus probably more so life is good. For me and I believe others post op. the biggest challenge  was constipation and getting the gut moving again.  it might have been a combination of drugs,  4 hr op etc.   It took me about 10 to 14 days to feel comfortable.

Absolutely no problems since.

I was up and about within 24 hrs.  The catheter awkward at night to get solid sleep, not painful though.  I kept a good flow of water intake, no alcohol or caffeine. Seemed to work for me.  

take care and all the best 

 

 

User
Posted 12 Apr 2019 at 18:59
God, yes - constipation! When I had my kidney removed last September I got completely blocked up from all the opioid painkillers they give you in hospital, and I couldn’t “push” because my abdominal muscles had been cut during the surgery (the same as with an RP). After 8 days of no movement I phoned “111”, they told me to ring “999” and the hospital gave me an enema to get things unblocked. Talk about a relief!

Cheers,

Chris

User
Posted 13 Apr 2019 at 01:25

My husband 56 had prostate removed just over 3 weeks nothing was fully explaind said mite have slight incontinence but he’s fully incontinent which was a shock I’ve rang and asked wen will it improve and all they can say dif people dif times please look into it first are whole life has turned upside down my husband will not go out as he leakes through a lot he has gone very depressed so please look into it properly and ask all questions good luck with what you decide my husband regrets havin it done 

User
Posted 13 Apr 2019 at 09:46

Holmsey - Really sorry to hear this, I just hope things improve with time. I must admit, the thought of being left incontinent and housebound is a major concern, ED I could live with but not that.  The problem is, non of the treatment options and side effects look great to me, it’s just a real tough choice. My thinking is, as I’m relatively active and fit, I might have a good chance of recovering from the surgery and I really do want the cancer taking out of body if at all possible. 

User
Posted 13 Apr 2019 at 10:09

Hi Neil,

I was diagnosed as Gleason 9 all indications were it was totally enclosed within the prosate.   I had a radical prostectomy in September 2018 (DaVinci).   Prior to this I consulted with the surgeon and the oncologist, both gave me their views but left the final decision to me, they did not push their preferred options at any time but just gave me the facts.   Radiotherapy would have involved a surgical procedure for me anyway as they told me I would have to have Brachiotherapy which involved inserting radioactive seeds and then a long course of radiotherapy.   In my view the prostectomy surgery just seemed more straightforward and I would be told fairly quickly what the surgeon would have found in terms of spread as he would remove surrounding areas which would be checked for any signs of cancer.  Recovery from surgery is indeed different for everyone, for me it took about a month before I could return to work (office based).   During that time, apart from having a cathetor for a week after surgery progress was nice and steady.   I have had several reviews since surgery and psa remains undetectable so the surgery for me was a complete success even though I am aware there is still a risk of recurrence which is why they do regular monitoring checks.   I do not regret my decision and more than happy to discuss my experience or any concerns you have.

Pauly

User
Posted 13 Apr 2019 at 10:15
The best advice I can give you if you opt for surgery, is to go for a high-volume surgeon. Practice makes perfect, and my own brilliant surgeon who has done over 3000 prostatectomies, said he wouldn’t send any friend or family to a surgeon who does less than 100 RALPs a year.

You can check individual surgeons’ performance on-line. The results are called ‘outcomes’.

Cheers, John.

User
Posted 13 Apr 2019 at 10:18

Morning Pauly - Thant’s great news, just what I wanted to hear, I just hope my recovery goes as well. 

 

User
Posted 13 Apr 2019 at 10:23

Bollinge- I’ve already been referred to a surgeon, I have been told he’s highly regarded but I’ve no idea how many procedures he does in a year - short of asking him, I’ve no idea how to find out that information.  

User
Posted 13 Apr 2019 at 10:28

Hi Neil,

You should be fine, just make sure you follow their advice post surgery and don't overdo things or rush to get back to 100% physical activity.   You say you are fit which really helps with recovery but just take it easy, slow and steady is very effective.   No heavy lifting (a full kettle max) to start with.   Short walks and light meals.    Plenty of rest.  Sleeping with a cathetor was  not easy for me (in fact I hated it) but it's over quickly enough 7-10 days on average.   You may get some leakage but their good mens tenna pads out there which can easily cope, no one will no you are wearing one but you.   I still get the urge to pee far more than before I was diagnosed but it's not really a problem you can't manage and as I said everyone has different experiences anyway.    When do you go in for the op?

Pauly

User
Posted 13 Apr 2019 at 10:35

Neil 

I don't normally reply to newbies, you will see why if you read my profile but your situation is so similar to where I was just over 5 years ago, I even sat on the anesthetic table asking if it was too late to change my mind. Almost 5 years on I have been "through the mill" but still here and still moaning (not all the time). All of my issues have been 1 in 500 or rare so I am definitely not the norm. My biggest concern was ED closely followed by incontinence, initially I was 99 percent dry 4 days post catheter removal, Ed was and is an issue but boy has it been fun trying to sort it and in my case, orgasms after prostate removal are out of this world. Five weeks post op I was back at work and the world was back to my new acceptable normal. You have the opportunity for a cure take it. If I could turn back time, would i do the same again ? yes.  

One of the first things I looked at was "what will death from prostate cancer be like" stories said "with modern medication you will not be in pain" I think that was a lie. 

Thanks Chris

User
Posted 13 Apr 2019 at 10:39

Hi Neil,

I would add that looking at the other posters on here you have pretty much got the A-Team on these forums commenting and I doubt there are any questions or concerns they couldn't address with you, they are a great bunch and always happy to help with their excellent knowledge and experience.

Pauly

 

User
Posted 13 Apr 2019 at 10:41

Pauly - That all sounds really positive, any idea when I might be back out on a golf course?  My appointment with the surgeon is May 14th, I’m guessing this is for a chat and assessment. I was told I was on a cancer pathway, which I assume means I should get treatment within a set time frame (around 60+ days?). May 14th is getting close to the end of that time, so perhaps the operation could  follow shortly. 

User
Posted 13 Apr 2019 at 10:55

colwickchris - Having just read your story I’d say “been through the mill” is an understatement. It almost looks like what could go wrong, did go wrong - how on earth do clips get left inside you? What a journey you’ve been on! I’m hoping mine might be a little less eventful :-(

User
Posted 13 Apr 2019 at 11:06

Neil

The clips are inert and are routinely left in and are supposed to harmlessly settle in a corner.

Good luck 

Thanks Chris

User
Posted 13 Apr 2019 at 11:06

I hope all goes well for you think a lot of my husbands problem is his health in general he had a bleed in the brain 2 coils fitted a heart attack 3 years ago and he’s been told he has blockages in his leg I suppose it’s better for him to be incontinent than having cancer just wish things were explained better to us but you have chance to look into everything good luck and speedy recovery 

User
Posted 13 Apr 2019 at 11:09
You can find surgeons’ outcomes on their own website, and you can research them by name.

https://www.baus.org.uk/patients/surgical_outcomes/

And of course, if you click my profile you can read all about my little difficulty down below.

Cheers, John.

User
Posted 13 Apr 2019 at 11:39

Hi Neil,

Golf can wait for bit to be honest.    You will know when you are ready, maybe 2 months, maybe 3 or longer.   Putting green and 9 holes chip and putt for a bit with a light bag/trolley to start.   then the driving range for the driver before you get into the swing of things.   Never know avoiding too many wayward drives could actually improve your game!

User
Posted 13 Apr 2019 at 12:55

Thanks Paul, my handicap has been heading North lately anyway, perhaps a break from the game might do me good. In the great scheme of things I suppose it’s not important, I would like to think I’ll be back playing again one day though.

User
Posted 13 Apr 2019 at 13:19

Bollinge - Thanks for the link John, very interesting.  Seems my guy has over 70 robotic procedures under his belt, I’m hoping he’s got the hang of it by now. Just had a good read of you profile, love your story telling style, had me in stitches :-D

User
Posted 13 Apr 2019 at 14:54

Originally Posted by: Online Community Member

Pauly - That all sounds really positive, any idea when I might be back out on a golf course?  My appointment with the surgeon is May 14th, I’m guessing this is for a chat and assessment. I was told I was on a cancer pathway, which I assume means I should get treatment within a set time frame (around 60+ days?). May 14th is getting close to the end of that time, so perhaps the operation could  follow shortly. 

The timeline targets are a bit of a mess, to be honest. NICE says you should have your surgery within 31 days of agreeing to go ahead with surgery, but in your case the 31 days probably won't start ticking until the 14th May when you see the other surgeon. Transfer from one hospital to another stops the clock unless they are both in the same clinical commissioning group (CCG) I think. 

The 62 day target applies only if your GP or a screening clinic made an urgent referral to urology - but again, the clock stops if you are referred to a different hospital, or if you take time out to make a choice between different treatment options. 

Perhaps I am cynical but it seems to me that there is a benefit to the hospital if the MDT makes no absolute recommendation. That doesn't apply in your case but it does in many others here. If a urology department knows it cannot meet the timescale for surgery, it could (if it is bothered about the targets) just put men on hormones to stop the clock. And even then, the hospital only has demonstrate that they achieve the target in 85% of cases. Hard luck for the 15% who end up waiting longer. 

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

User
Posted 13 Apr 2019 at 15:13

LynEyre - The other hospital is just 12 miles up the road and is in the same NHS Trust. What difference do think that will make to the surgery date?

User
Posted 13 Apr 2019 at 15:30
Who knows - it depends on whether you were logged as having opted for RP when you saw the urologist (in which case they are going to miss the target anyway because your meeting with the surgeon is outside the 31 days) or whether they have logged it as a referral to discuss surgery with the surgeon, in which case the target will be a maximum of 31 days after you say to the surgeon 'yes, let's go ahead'.

If you have any planned holidays or important events coming up, the surgeon might talk to you about whether you want to delay the treatment. That stops the clock as well but is probably worthwhile. Our big regret here was not taking the surgeon's advice to go away and have a lovely holiday before the op - whatever happens with the short / long term side effects, your life will never be quite the same again.

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

User
Posted 13 Apr 2019 at 15:39

Originally Posted by: Online Community Member

The timeline targets are a bit of a mess, to be honest. NICE says you should have your surgery within 31 days of agreeing to go ahead with surgery, but in your case the 31 days probably won't start ticking until the 14th May when you see the other surgeon. Transfer from one hospital to another stops the clock unless they are both in the same clinical commissioning group (CCG) I think. 

The 62 day target applies only if your GP or a screening clinic made an urgent referral to urology - but again, the clock stops if you are referred to a different hospital, or if you take time out to make a choice between different treatment options. 

Sounds a bit like Brexit.

Pleased to have had the opportunity to make that point as this is one of the few fora where leaving the EU is rarely mentioned.

Surprised Hammond et al haven't come out with "PCa cases to triple if we leave the EU" as more Project Fear scaremongering!😉

Edited by member 13 Apr 2019 at 15:41  | Reason: Not specified

User
Posted 13 Apr 2019 at 15:45

We did think about going away before the appointment, sounds like good idea now, I imagine flying will out for quite some time after op. 

User
Posted 13 Apr 2019 at 16:00
It's not just whether or not you will be permitted to fly (it is actually quite a short time - 10 days, I think) - the bigger issue is how long before you will be continent enough to travel comfortably, able to walk any distance, stay seated in an upright position for long periods of time, pull a suitcase, etc etc plus the need to keep any scar tissue out of the sun. Then you have to consider how the op may affect you emotionally; many cancer patients cope fine while they are preparing for treatment (adrenaline) but once it is over, can find themselves with very low mood or even depression, which makes a holiday not much fun for anyone. And then there is the matter of travel insurance.

If the surgeon says it is a good idea when you see him/her, then yes I would suggest you give it serious consideration.

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

User
Posted 13 Apr 2019 at 18:51

Not that it matters that much, but I'm giving golf a miss for now, going to take up Archery, way less costly and I don't have to worry about over doing the walking! Mind you having a Labrador, I do plenty of walking already.

User
Posted 13 Apr 2019 at 23:20

Originally Posted by: Online Community Member

Bollinge- I’ve already been referred to a surgeon, I have been told he’s highly regarded but I’ve no idea how many procedures he does in a year - short of asking him, I’ve no idea how to find out that information.  

Ask him how many he does. You can also discuss his success rates both in terms of success with removing the cancer and minimising side effects. It’s your life in their hands

User
Posted 13 Apr 2019 at 23:42

I went to Australia 8 weeks after the op and could have gone earlier but I had a post op appointment 1 week before and to me that was a vital appointment that would say if my op was initially successful.  I was ready to cancel whatever it might cost if I needed more treatment and had only booked deposits and moveable costs.

I was very keen to have the operation but from time to time felt concern about if it was the right choice.  I've never changed my mind although reading on here it wasn't as cut and dried as I thought.  Yet both the urologist and a surgeon said that with my diagnosis, which was upgraded after the op, it was the best decision. 

I don't know the details of size, location of your tumour but mine was said to be near the edge so I was keen to get it done. Your psa isn't that high and your Gleason is moderate.   If the surgeon is only going to chat with you in mid May you might try for an earlier date and ask about an earlier operation.   I checked my surgeon on the British Association of Urological Surgeons webpage and read about him in private hospital websites so felt he'd got good experience.  Keep focused on what you want.

User
Posted 14 Apr 2019 at 09:36

Never understood why the risk of side effects of surgery seem to be considered as worse/higher than other methods.

Possibly because the twin spectres of incontinence and ED loom large. While they are real, in the hands of a good, well-practised surgeon, the odds of a near full recovery ( certainly for continence) are very good. Also, it’s not as though the other methods are free of unpleasant side effects either, with incontinence and ED among them.

If you have a normal sized prostate then small-seed brachytherapy may be worth looking into as well.

However, for me, belonging to the “only good carcinoma is the one in the bucket” school of thought, getting it out while it was considered to be confined to the prostate was the way to go.

Wish you all the best in your decision making process.

Nick

User
Posted 14 Apr 2019 at 09:37

Peter’s place - Travelling to Australia 8 weeks after a major op is seriously impressive, I’m guessing you were reasonably dry by then which is in encouraging to hear.  I’m amazed you could get travel insurance though, my usual company wouldn’t even take me on when they found I was under investigation, I’m guessing they’ve been stung by some very expensive claims for treatments abroad. 

 
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