UCLH advise

User

Posted 16 Dec 2023 at 04:46

This is my first posting and I apologise if some of it doesn’t make sense, but I’m scared and somewhat bamboozled by the all the different terminology and information so far.

My partner’s targeted biopsy results took his original gleeson score from 6 to 7 (3+4). Is this new score indicative of multifocal cancer? The cancer is contained thankfully. The MDT are due to discuss next Friday and will contact him with their decisions. In the meantime we will be looking at moving care from the NW to London as this is where we live. Have been told by the hosp that we will need a consultant/surgeon name to effect the transfer so am looking for advice and recommendations. Unfortunately we are not in a position to go privately and so looking at the best possible NHS option.

has anyone any experience/recommendations of UCLH and the urology department/consultants? As yet we have not been offered any advise as to the best way forward but I feel the sooner we can get his care transferred, the better it will be with regards to waiting times etc.

At 55 and recently retired he isn’t coping at all with the diagnosis of cancer and so I want to have as much information to hand to hopefully make things a bit smoother, I also think this is perhaps my way of coping - I don’t know what else to say or do 🥺

also, I thought that it was possible to check surgeon credentials on BAUS, but I have been unable to figure out how to access. Any help would really be very gratefully received.

many thanks

User

Posted 16 Dec 2023 at 09:04

Hello Emsih,

Sorry for what the two of you are going through.

Gleason score doesn't tell you if cancer is multi-focal or not. The full biopsy results will give an indication where it is, together with the MRI scan results.

You don't give the background, but if he's had two biopsies, I'm guessing he has been on Active Surveillance if the first was 3+3. 3+4 is the next step up (low end of intermediate), and they will consider if he can stay on Active Surveillance or if he should switch to active treatment - it will depend how much '4' there is and how much the cancer has grown since the original diagnosis.

UCLH is probably one of the better hospitals, and is certainly one of the highest throughout in terms of prostatectomy and numbers of surgeons doing it. It has good CNS's and a support group for its own patients which meets monthly, and also on Zoom (but it's much better to be there in person). It's struggling with Andrology support at the moment, but most places don't have any at all, so it's still better than them.

Other good hospitals in London are Guys and St.Thomas's, and Imperial and Charring Cross. Both UCLH and Imperial and Charring Cross do focal therapies if you were interested in those, whereas Guys and St.Thomas's has the surgeon who does many of the salvage prostatectomies after failed focal treatments!

BAUS removed all the surgeon stats a while back. I haven't looked recently to see if its returned or not, and we didn't know why it was removed. I did ask one surgeon if he knew, be he didn't even know they'd been removed.

User

Posted 16 Dec 2023 at 10:56

Thank you so much for your response. History is PSA August of 8.4, followed up by MRI in September which came back PIRAD 5 - this was the first shocker! Following week first biopsy was done with results four weeks later, these showed two areas - one of 2% and less than 5% which obviously didn’t match up with the MRI findings. At first consultant meeting after this biopsy Gleeson was 6 3+3 but consultant was concerned that they hadn’t found what they were looking for. Fast forward to last week, targeted biopsy was done under GA, results yesterday were gleeson 7 (3+4) which matched with MRI findings. Everything has moved so quickly if I’m honest that there has been no real discussion about any treatment whatsoever. MDT meet next Friday and I assume we will know more then. I almost wish they hadn’t scored it at 6 in the beginning, and had just got on with the targeted biopsy, because it feels like false hope (not for me because I’m a glass half empty kinda person - a realist I like to think - and so I expected it), my OH isn’t coping well. I’m proactive and have relentlessly researched since the get go, but I find it difficult to talk to him about anything. Imperial College is our healthcare provider with Charing Cross being just down the road, but UCLH isn’t far either. It’s just a minefield of information at the moment and finding it really really difficult to wade through it all, or to know what treatment options are better.

User

Posted 16 Dec 2023 at 10:56

Another top cancer hospital is the Royal Marsden who have a Branch in London. If you are moving I would just ask your consultant there to kindly request transfer to your chosen London Hospital.

In my experience the range and quality of treatment at UCLH is excellent and they have what is widely regarded as the top Focal Therapist in the UK and a team that instructs others and participate in many trials. Having said that, maybe it is in part due to numerous referrals and being so busy but progression is often slow and their admin not so good (and I am not alone in saying this). UCLH in London and The christie in Manchester were selected as the only two NHS hospitals to have a cyclotron which means they can treat where considered appropriate with Proton Beam.

Barry

User

Posted 16 Dec 2023 at 11:02

Thank you for taking the time to reply Barry, I really really appreciate it. Initially it’s a lonely and bewildering place to be at the beginning of this journey, especially as a partner, but I feel I’m in the right place for the kind of support we will need.

User

Posted 16 Dec 2023 at 11:03

Sorry, what is Andrology support?

User

Posted 16 Dec 2023 at 12:13

Andrology is more or less the equivalent of gynaecologist. So treatment of male fertility and erectile dysfunction belong in this department, but most hospitals don't have an andrologist and hope the urologists can do it is a side hustle.

Dave

User

Posted 16 Dec 2023 at 12:17

Thank you 😊

User

Posted 16 Dec 2023 at 17:42

Hi Emsih,

I'm very sorry that you and your partner are having to deal with this. I had quite a lot of my care at UCLH, though not the actual surgery (which for various reasons I ended up having privately down the road, though both the surgeon and the anaesthetist were from UCLH). On the whole I found it to be pretty good. Actually, my experience corresponds almost exactly to what Andy said: the clinical nurse specialists were amazing—knowledgeable, empathetic and quick to respond to emails; andrology support feels very thin (though I guess still better than many places where there is next to nothing).

They are not always great at sending on documents. I've had several appointments where the follow-up letter has not arrived, either electronically or in paper copy, though it has apparently gone to my GP. When they told me about the diagnosis and the recommendations from the MDT, that was just in a conversation over the phone. I was never sent any paperwork and it didn't occur to me until really late on, when I was close to having my surgery, that I could ask for it. Once I had the MDT report and the biopsy results I could actually see how many cores were taken, how many were positive, etc.—nobody had told me any of that. So I would be sure to ask for all the info at the outset.

User

Posted 16 Dec 2023 at 20:43

Apart from not receiving appointments at UCLH, admittedly it was several years ago now, but I received a number of copies separately for the same appointment and with several appointments was told to present in one of the UCLH buildings when in fact the check up when queried was confirmed as being a telephone one. There were several other things that I could mention but on one occasion I was given appointments at overlapping times for scans in two different buildings. When I pointed this out I was told these two scans should not be done on the same day anyway! I had to involve PALS (Patient Liaison Advisory Service) a couple of times when they failed to respond to correspondence). Hopefully admin is now better but if you decide to go with UCLH be aware you might need to keep a careful check on things.

Barry

User

Posted 17 Dec 2023 at 07:08

UCLH did my penile implant and I found it to be a superb hospital

User

Posted 17 Dec 2023 at 11:55

Originally Posted by: Online Community Member

Another top cancer hospital is the Royal Marsden who have a Branch in London.

Oops, yes I should have included Royal Marsden.

Originally Posted by: Online Community Member

UCLH in London and The christie in Manchester were selected as the only two NHS hospitals to have a cyclotron which means they can treat where considered appropriate with Proton Beam.

Neither of them seem to consider prostates appropriate to treat with Proton Beam, and that might not be completely unrelated to why the Rutherford Cancer Centres which offered Proton Beam privately didn't succeed.

User

Posted 17 Dec 2023 at 17:13

Proton Beam for Prostate Cancer is offered privately at UCLH under the auspices of Proton International London but not on the NHS. https://www.protonintlondon.com/cancers-we-treat/private-proton-beam-therapy-for-prostate-cancer/

As regards the closing of the Rutherford Centres, the initial capital plus running cost was high and patients less inclined to spend money during the uncertain time of Covid as one of the several reasons why they were not successful.

Professor Karol Sikora said what a waste the closure was. https://www.telegraph.co.uk/news/2023/11/02/nhs-closed-cancer-centres-incompetence-karol-sikora/#:~:text=Prof%20Karol%20Sikora%20is%20campaigning,Health%20Group%20went%20into%20liquidation.

Edited by member 17 Dec 2023 at 17:18 | Reason: Not specified

Barry

User

Posted 17 Dec 2023 at 18:28

At one of the local support groups, there was a talk from an oncologist about treatments. He had been sending private patients for proton beam therapy. He didn't want to be drawn about the issues, but the results didn't live up to expectations and current external beam (photon) technology was working better, so he stopped referring patients for proton beam.

I also note that US proton beam centres reaching the end of their life are apparently not being replaced.

Still, no one has published any randomised control trial data showing benefits for proton beam treatment for prostate cancer, as far as I know.

I watched a conversation between salvage prostatectomy surgeons, where there were discussing why they see the worse damage to neighbouring organs/tissues in the case of salvage prostatectomy after proton beam.

There clearly are cases where it's a beneficial treatment (such as brain, eye, children, etc), but it doesn't currently look like prostate cancer is one of these. I spoke with radiotherapy at UCLH around the time their PB system went live, and there was some interest in the department in doing a comparison trial of some sort, but I haven't heard any more about that.

On reopening the centres, the main problem is lack of staff rather than lack of equipment, and it doesn't solve any problems if a large private facility pulls loads of staff out of the NHS. The money would be better spent training more radiographers.

Edited by member 17 Dec 2023 at 18:30 | Reason: Not specified

User

Posted 18 Dec 2023 at 04:09

There is indeed a lack of comparative study between the effectiveness of Proton Beam and Photons for treating PCa. and it does not appear to be the case that the advantages for other cancers have have been demonstrated for PCa.

The USA being the cradle of Proton Treatment, it is correct to say that some of the centres there have reached the end of their life. However, what you say about them not being replaced conflicts with what I have read. They are expected to be replaced by smaller and more advanced units as stated in this link. https://www.itnonline.com/article/proton-therapy-predictions-next-decade#:~:text=Amog%20our%20predictions%3A%20proton%20therapy,well%20as%20very%20small%20lesions They may in a more advanced form prove the the theoretical advantages of Protons for PCa but will certainly be required for other cancers where it is acknowledged that they are superior to Photons. As of August 2020, there were over 89 particle therapy facilities worldwide, with at least 41 others under construction. As of March 2023 there are 106 able to treat so overall the numbers are going up not down.

Edited by member 18 Dec 2023 at 04:20 | Reason: to highlight link

Barry

User

Posted 18 Dec 2023 at 20:45

One other thing about UCLH: if one of the treatments they suggest is surgery, it might be worth asking, when you have a consultation with the surgeon, whether they are still running the Neurosafe trial and if it would be suitable for your partner. I think that in a lot of cases it won't make a difference whether you have Neurosafe or not, and the trial is randomised, so there's only a 50/50 chance you'll get it anyway (and they won't tell you which version of the operation they did). But it does mean that you'll probably get another consultation with a different surgeon to talk about it, and that can be quite useful. In my case, my first consultation with a surgeon was pretty bad: he got my name wrong, clearly hadn't read the paperwork and wasn't familiar with the case, couldn't answer my question about whether they were likely to be able to spare any nerves (he eventually said maybe on one side—in fact the plan was always bilateral) and tried to book me in for the operation even though I said that I still had to talk to the radiotherapy specialist and hadn't yet decided. But then when I spoke to the surgeon running the Neurosafe trial it was completely different: he was very informative, very precise about the information, and he really listened.

All of which is to say, I think it's worth asking about it.

User

Posted 20 Dec 2023 at 08:50

Thanks for you reply, it’s greatly appreciated. When we spoke to the current hospital about moving they were a bit curt, said it was fine but said they needed ‘a name’ before they could refer. Am I assuming that they need the same of a consultant? I know we probably should have asked what they meant but we were like rabbits in the headlights really :/

User

Posted 21 Dec 2023 at 10:49

We can't name people on here but I've sent you a direct message.

User

Posted 21 Dec 2023 at 12:41

Thank you so much - yes that person is someone who I had written down. I think that the hospital are happy to refer and we will look at the route suggested rather than a name. I couldn’t reply to your message because I’m new, but as soon as I have become more established I will do. Really appreciate your advice :)

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