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anyone changed hospital for quicker treatment

User
Posted 20 Oct 2018 at 20:26

Hy,have posted before about waiting times for robotic surgery,was initial told I would be waiting 4 to 6 weeks,now it's 8 to 10,I know many are telling me,a few weeks won't make any difference,but in my head It's already spreading,I can't sleep,or eat,I'm probably weak,but ,I can't lift the depression,Now,I've been told that if I go to Stockport (about an hour away)I can be seen much sooner,just worry that if I transfer and then go there,some delay could happen there also,thoughts please,should I stay where I know or try and get treated somewhere else?

User
Posted 20 Oct 2018 at 23:28
Get confirmation from your GP that the wait really would be shorter before you commit to changing hospital. The NHS targets for treating cancer don't apply if the patient has asked for a change of hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Oct 2018 at 06:48
Hi Dave,

I live in Coventry and my local urological surgeon does around 70 robotic prostatectomies a year. At my request I got referred on the NHS to a much more experienced surgeon in Guildford who does 300-400 ops a year, with over 3000 total under his belt.

The local consultant even mentioned the Guildford guy’s name when I mentioned a certain prostatectomy procedure, and was totally OK with him doing my prostatectomy. The op was done in Guildford, the catheter removal in Coventry, the post-operative consultation in Guildford, and oncological and urological follow-ups are now back in Coventry, under the auspices of the original surgeon.

Apart from a few quid spent on petrol and train fares, everything went smoothly, especially as the Guildford surgeon charges £19,950 for a prostatectomy in his private clinic!

I have been told I am now ‘cured’, so happy days.

Best of luck,

Cheers, John.

User
Posted 21 Oct 2018 at 23:04

Hi Dave,  I can understand how you feel about it taking a long time. I was very speed oriented as I had the 5am wild imagination syndrome.  I wanted a surgeon with experience but at the end of the day wasn't over concerned about how the op was done.

You can find a surgeons experience on the website of the British Association of Urological Surgeons.  I was looking at all the hospitals in the area including private ones and checking their surgeons although in the end I got a good date and was happy with the nearest surgeon.

I think your hospital should be finding you somewhere else even if they have to pay a private hospital as 8-10 weeks is very poor and takes you to Christmas which could cause further problems.

User
Posted 25 Oct 2018 at 01:52
Wow! Just enough time to go shopping then - some useful items include bucket, pants (not boxer shorts) in a size larger than usual, some tracksuit pants or joggers in a dark colour and preferably with a drawstring waist, waterproof sheet or pads for after the catheter comes out (might not be needed but just in case) and check whether the hospital provides Instagell for the end of your penis.

And have you applied for your prescription exemption certificate?

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

User
Posted 14 Nov 2018 at 22:57
Hope your recovery continues to go well.

Ido4

User
Posted 10 Dec 2018 at 11:59
Søren has got me through a tragic and tortuous few years and I have triumphed rather than just surviving; he stays.

People that don't like him can just not read my posts and I had already made a mental note never to reply to any of Reen's posts in case I distress her further.

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

User
Posted 10 Dec 2018 at 12:10

Originally Posted by: Online Community Member

When you read without logging on the comments are anonymous.   However if you know the quote owner you can quickly see all the owners comments.  It might not be important but you never know what info is being put together.  I no longer sign my comments so they're less traceable.   

 

Actually, that is a good point. I have had that signature for many years and hadn't considered the implications of the new forum being open access. Until 2014, no-one could see any posts unless they were members and signed in - the PCUK decision to make it googleable was a major concern and led to a number if people leaving. It is the main reason that I always reply with people's tag rather than their real name.

Newer members are a bit naive about this sometimes I think. When Ulsterman first joined, he gave his real first name and then in a subsequent post mentioned what he did for a living... from that I was able to find his full name, the organisation that he works in and his photo. It was funny at the time but also quite sobering - I wouldn't want one of our children or someone that knows me professionally to stumble on some of the stuff I have written about our sex life, for example. 

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

User
Posted 30 Dec 2018 at 18:14

Strange that Reenmatch as chosen to have a go about this again  yet has not responded to thank the kind folk who have responded about her husband's situation.

Show Most Thanked Posts
User
Posted 20 Oct 2018 at 21:45
You have not put anything under your Profile/Bio other than you have been diagnosed with advanced prostate cancer. If this is your situation it may well be that in addition to your proposed Prostatectomy, you may need follow up RT.

In your position I would try to ascertain what the waiting time would be for surgery at alternative hospitals within your CCG area and whether you could have follow up RT if needed with the hospital you currently attend. and further monitoring by them as required. You would need to discuss with your GP to initiate any change.

It does make for a more tidy arrangement if all treatment is carried out by the same hospital but I had my RT in Germany, was subsequently monitored by The Royal Marsden, who in turn referred me to UCLH for further treatment, so it can be done .

Barry
User
Posted 20 Oct 2018 at 22:19

Thankyou,have updated my profile,my head is all over the place to be honest

User
Posted 20 Oct 2018 at 23:28
Get confirmation from your GP that the wait really would be shorter before you commit to changing hospital. The NHS targets for treating cancer don't apply if the patient has asked for a change of hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Oct 2018 at 06:48
Hi Dave,

I live in Coventry and my local urological surgeon does around 70 robotic prostatectomies a year. At my request I got referred on the NHS to a much more experienced surgeon in Guildford who does 300-400 ops a year, with over 3000 total under his belt.

The local consultant even mentioned the Guildford guy’s name when I mentioned a certain prostatectomy procedure, and was totally OK with him doing my prostatectomy. The op was done in Guildford, the catheter removal in Coventry, the post-operative consultation in Guildford, and oncological and urological follow-ups are now back in Coventry, under the auspices of the original surgeon.

Apart from a few quid spent on petrol and train fares, everything went smoothly, especially as the Guildford surgeon charges £19,950 for a prostatectomy in his private clinic!

I have been told I am now ‘cured’, so happy days.

Best of luck,

Cheers, John.

User
Posted 21 Oct 2018 at 07:31

Thanks LynEyre

That's one of my concerns,that's given me some clarity

User
Posted 21 Oct 2018 at 07:40

Thanks John,that's really interesting and helpful,in knowing what questions to ask,I know this robotic surgery is a lot better regardng recovery time,but appears to make waiting times longer to only two a day being able to be done,well,at my hospital anyway(Sheffiield)

Regards Dave

User
Posted 21 Oct 2018 at 08:04
So my best tip for you Dave, rather than worrying too much about the timescale or location (you should only be in hospital one or two nights if everything goes well) is to find out the experience and outcomes of whichever surgeon and where YOU choose to carry out your operation.

That has so much relevance to the success of the procedure, in terms of cancer excision, but also in post-operative continence and, (if you’re lucky) erectile function. “Professor 3000 prostatectomies” told me he would not send a friend or family member to any surgeon who does less than 100 prostatectomies a year.

I say let newly qualified consultant urological surgeons practice their RALPs on someone else!

Cheers, John

User
Posted 21 Oct 2018 at 08:13

Really appreciate your advice John

Cheers Dave 

User
Posted 21 Oct 2018 at 11:58

Originally Posted by: Online Community Member

Thanks John,that's really interesting and helpful,in knowing what questions to ask,I know this robotic surgery is a lot better regardng recovery time,but appears to make waiting times longer to only two a day being able to be done,well,at my hospital anyway(Sheffiield)

Regards Dave

Quicker recovery, shorter hospital stay but slightly worse outcomes in terms of incontinence, impotence and cancer recurrence - don't be misled that it is even a bit 'better' than open surgery because that isn't true. 

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

User
Posted 21 Oct 2018 at 12:21
User
Posted 21 Oct 2018 at 14:29
It looks like this is a small scale study of outcomes for men who were locally advanced - not really surprising that the outcomes are similar when many of the men needed non-nerve sparing surgery. The European study published earlier in the year was for all RPs. If we take a very small scale data set of members here, the men that have had the worst side effects and complications have all had robotic or keyhole RP, I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Oct 2018 at 16:01
Unfortunately cost savings outweigh life expectancy for NICE
User
Posted 21 Oct 2018 at 17:01
Sorry, Pete, that just isn't true. The whole point of the NICE evaluations is that a value is placed on survival years.

AC

User
Posted 21 Oct 2018 at 17:36
Yes but to a limit.

E.g. There are drugs that are used for late stage cancer patients that they won’t release for early ones even though they have a positive effect because they can’t negotiate hard enough with big pharma to get the prices down.

Don’t misunderstand me - I understand the impossible situation NICE is in because they have to ration. The real issue is that the whole model is messed up. A model where the company that does the research AND manufactures the drugs to a patent is a cartel / oligopoly model. The government needs to negotiate harder with the pharmas to control prices, legislate to separate research and manufacture (like we had to with separating investment and day to day banking) and invest more as a nation in research rather than let capitalism run it. If you read some of the horror stories about what happens across the globe in his arena it would make your blood boil.

User
Posted 21 Oct 2018 at 23:04

Hi Dave,  I can understand how you feel about it taking a long time. I was very speed oriented as I had the 5am wild imagination syndrome.  I wanted a surgeon with experience but at the end of the day wasn't over concerned about how the op was done.

You can find a surgeons experience on the website of the British Association of Urological Surgeons.  I was looking at all the hospitals in the area including private ones and checking their surgeons although in the end I got a good date and was happy with the nearest surgeon.

I think your hospital should be finding you somewhere else even if they have to pay a private hospital as 8-10 weeks is very poor and takes you to Christmas which could cause further problems.

User
Posted 22 Oct 2018 at 02:50
PPete,

The cost of drugs is high because it is said on average to take up to 12 years to research, obtain approval for and market a successful new drug involving research into many possibilities that are not successful and have to be aborted. All these costs have to be incorporated in the charge for the successful drug which in the event may be outperformed and superseded quite quickly by that of one from a competitor. Then there is a time limit before others can make generic copies. It's a high risk business. The returns on pharmaceuticals are not high (the reason I sold a small holding I had for years). UK Governments do not have enough of our money to pay for all this speculative research, they even needed to have Private/Public Partnerships to pay for some of the new hospitals. There are also many other areas other than medical where money is urgently needed. In any case, most of the major pharma companies are outside the UK and if we don't meet their price we don't get the drugs.

I have not expanded further as it doesn't help Dave, although decisions made by NICE curtailing treatment could affect any of us. Fortunately, it was the Pelican Foundation Trust rather than the NHS who funded the 'Forecast' study wherein I had HIFU in 2015, thereby saving NHS money. So the NHS is being helped out by private charities.

Barry
User
Posted 22 Oct 2018 at 10:14
I think I heard the cost to trial a new drug from inception to market costs around £100,000,000!
User
Posted 22 Oct 2018 at 15:13
US$2.6 Billion+ according to the Tufts report of 2014 and on a steep upwardly rising curve so much more now!
Barry
User
Posted 24 Oct 2018 at 21:16

Just a little update,yesterday,I decided that i would change hospitals,my nerves have got worse,silly I know,what decided me that I was still going to have the same consultant,and go back to my present hospital for follow up care,To cut it short I was transferred yesterday,they called me today,and I'm booked in for operation on the 10th of November

regards dave

User
Posted 25 Oct 2018 at 01:00
Well apart from other reasons less contemplation time - so good.
Barry
User
Posted 25 Oct 2018 at 01:52
Wow! Just enough time to go shopping then - some useful items include bucket, pants (not boxer shorts) in a size larger than usual, some tracksuit pants or joggers in a dark colour and preferably with a drawstring waist, waterproof sheet or pads for after the catheter comes out (might not be needed but just in case) and check whether the hospital provides Instagell for the end of your penis.

And have you applied for your prescription exemption certificate?

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

User
Posted 25 Oct 2018 at 07:29
No one anywhere told me about the prescription exemption certificate at any time.

I found out by chance two weeks ago it was a thing 😤

User
Posted 25 Oct 2018 at 09:41

Thank you,appreciate the list,surprising things you don't think of,being a 66 year old pensioner,though already get free prescriptions

Regards David

User
Posted 06 Nov 2018 at 22:26

as much as I have really appreciated the advis and incredible support from this forum.  What’s is really starting to grind me down is the repeated philosophical bloody quotes ! At the end of some folks ,somtimes helpful input.  Then the anger inducing bloody quote!  Grinding  through the weeks of anger, despair, tiredness   A repeated bloody quote makes want to explode !  Please remove these synthetic quotes at the end of your inputs 

User
Posted 06 Nov 2018 at 22:29

my husband was not told by his nurse specialist he was eligible for free prescription. It was by my pure bloody mind set I found out.  You can reclaim costs.  But that’s not the point! You should have been told from the day of your diagnosis 

User
Posted 06 Nov 2018 at 23:55
Agree, can't see the point of unrelated quotes which just waste time as you start to read them each time posted. Unfortunately, it's a fad that has caught on quite extensively on forums. I believe one of the instigators for this was on car forums where many of the members sign off with details of the cars they own or have owned, with all the specifications, modifications etc., which detail is sometimes longer than their posts!

Barry
User
Posted 14 Nov 2018 at 21:46

Just an update,had my operation last saturday,went down in afternoon to theatre,discharged at ten the next morning,so far so good, So glad,I went to a different hospital,and had,it done 3 weeks earlier than i would,have done at my hometown hospital,especially as it was with the same surgeon(crazy),I know,already had appointments through for bag removal,and follow up appointment

User
Posted 14 Nov 2018 at 22:57
Hope your recovery continues to go well.

Ido4

User
Posted 09 Dec 2018 at 20:38

Four weeks post -op and really thrilled that for the last two nights I have been dry,and  for most of the day as well.driving around,quite easily now,although tire easily do keep wondering where my manhood as disappeared to though,definately lost a good inch

User
Posted 09 Dec 2018 at 21:15

Quote:
Reenmatch;203328What’s is really starting to grind me down is the repeated philosophical bloody quotes ! At the end of some folks ,somtimes helpful input.  Then the anger inducing bloody quote!  

 

I personally do not use these but I don't see the harm in them. Why do they annoy you so much when they are at the end of a post and you don't have to read them. Do you think they should be banned just because you don't like them? Some people might find them positive and indeed inspiring.

 

 

Regards 

Ann

User
Posted 09 Dec 2018 at 22:03

Glad it's not just me

User
Posted 09 Dec 2018 at 23:09

When you read without logging on the comments are anonymous.   However if you know the quote owner you can quickly see all the owners comments.  It might not be important but you never know what info is being put together.  I no longer sign my comments so they're less traceable.   

Regards Pike  (ah Pike I have your name)     (yes that gives a bit of extra info about me as well for those who know)

User
Posted 10 Dec 2018 at 05:41
If you are getting upset over utterly trivial and minor things like post signatures you are not stressing so much over your PCa so I consider them a good thing.
User
Posted 10 Dec 2018 at 06:03
Never been stressed by my PCa diagnosis at all.

If I had pancreatic cancer or worse I would have a totally different outlook (and prognosis).

Cheers, John.

User
Posted 10 Dec 2018 at 11:59
Søren has got me through a tragic and tortuous few years and I have triumphed rather than just surviving; he stays.

People that don't like him can just not read my posts and I had already made a mental note never to reply to any of Reen's posts in case I distress her further.

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

User
Posted 10 Dec 2018 at 12:10

Originally Posted by: Online Community Member

When you read without logging on the comments are anonymous.   However if you know the quote owner you can quickly see all the owners comments.  It might not be important but you never know what info is being put together.  I no longer sign my comments so they're less traceable.   

 

Actually, that is a good point. I have had that signature for many years and hadn't considered the implications of the new forum being open access. Until 2014, no-one could see any posts unless they were members and signed in - the PCUK decision to make it googleable was a major concern and led to a number if people leaving. It is the main reason that I always reply with people's tag rather than their real name.

Newer members are a bit naive about this sometimes I think. When Ulsterman first joined, he gave his real first name and then in a subsequent post mentioned what he did for a living... from that I was able to find his full name, the organisation that he works in and his photo. It was funny at the time but also quite sobering - I wouldn't want one of our children or someone that knows me professionally to stumble on some of the stuff I have written about our sex life, for example. 

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

User
Posted 10 Dec 2018 at 12:31
Quite sensible to use a pseudonym Matron, otherwise I might discover you live in Leeds and originally come from Newcastle.

With two more clicks I could find the address for your Christmas card!

Spooky or what? That’s the interconnected internet today, for better or for worse.

I think for the better, but such a shame when people abuse it.

Cheers, John.

P.S. We have no children or sex life now to be stumbled upon😉

User
Posted 10 Dec 2018 at 16:10
That's my point Bollinge- when I joined, there was no risk in using a real name as the ID because the forum was closed. By the time they changed it to an open forum, the horse had already bolted for me and there was little point changing my ID although others did. As I work on a national & international stage, there is probably no bit of my life that isn't already published somewhere but since Lyn isn't my real name, you would also need to know what I do for a living to be able to ruin my life 😂
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Dec 2018 at 18:23
Don’t want to ruin your life, Matron, you’re too valuable here!

I think I’ve deduced your real name anyway. Don’t worry, I’m not an internet stalker.

International stage? Have you ever appeared on Broadway? 😉

Cheers, John.

User
Posted 10 Dec 2018 at 18:32
Only in nipple tassels
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Dec 2018 at 18:36

Originally Posted by: Online Community Member


....but since Lyn isn't my real name, you would also need to know what I do for a living to be able to ruin my life 😂


You can't fool me Soren 

User
Posted 10 Dec 2018 at 18:41
🤣
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Dec 2018 at 12:05

Can you please post photos on your Facebook page?

You did well to appear on Broadway as most burlesque shows are on 42nd street! 🤣

Cheers, John.

User
Posted 30 Dec 2018 at 17:25

Inspirational quotes are simply cold words that mean nothing    as are quotes from any religious publication    it cheapens and makes the helpful advice seem as though it was cut and paste with no personal considerstion 

User
Posted 30 Dec 2018 at 17:39

Have we not had this discussion before??????

User
Posted 30 Dec 2018 at 17:49

Originally Posted by: Online Community Member

Inspirational quotes are simply cold words that mean nothing    as are quotes from any religious publication    it cheapens and makes the helpful advice seem as though it was cut and paste with no personal considerstion 

 

We are all different Reenmatch - personally, I love my words and they have got me through very dark times. I have no intention of changing because of one new member but I am happy to delete all responses and attempts at support I have given you in the past.  

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

User
Posted 30 Dec 2018 at 18:14

Strange that Reenmatch as chosen to have a go about this again  yet has not responded to thank the kind folk who have responded about her husband's situation.

User
Posted 05 Jan 2019 at 23:53

Its still a hard, long slog with emotions high and  outlook poor.

Hes home in pain incontinent and depressed 

zero support from employers and health care and taking unpaid leave 

spending a bloody fortune on continence supplies

   Not really taking any comfort in any philoshohical mantra whilst paying for continence supplies rather than heating! 

if life gives you lemons .,,.suck it up 

 
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