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Does it matter where you're treated?

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User
Posted 04 Mar 2018 at 13:09
For those of you who have followed my story, you'll know that I have been very pleased with the care I have received from my hospital and GP.

Before my diagnosis, I had heard of the Royal Marsden. I'd never heard of Christies or Clatterbridge. It seems some NHS hospitals are specialist cancer centres and have access to new and better treatments. And do all hospitals have access to clinical trials or only some?

I live 11 miles from my local hospital. The Royal Marsden is 27 miles away. What would be the benefits of changing?

Also, I don't want to stay in the south of England all my life - Yorkshire, the Peak District or the Lake District all spring to kind as places I'd like to live. What are hospitals like there?

So, my basic question is, do men with PCa have better outcomes depending on their NHS trust or the part of England in which they live?

Ulsterman

PS - I'm not going back to Northern Ireland - if you think the NHS in England has issues, the NI NHS has even more!

User
Posted 04 Mar 2018 at 14:49

Yes there are differences in outcome from region to region but it isn’t necessarily to do with whether you are under the care of a centre of excellence - more down to socioeconomic and environmental factors. Leeds TH is a centre of excellence for oncology and urology but outcomes in Leeds / West Yorks are worse than national average - traditionally industrial zone, lots of white working class men who (as a socio group) are less likely to seek medical advice until it is too late, plus complex (or not so straightforward) cases from others areas are referred on, e.g we have a couple of men on here who were treated at Leeds rather than in York or Harrogate or wherever.

The oncology centres of excellence are easily googleable but keep in mind that on paper their results might look not so great because of the complexity of cases and number of trials.

Not all hospitals have access to trials and it is sometimes a named consultant rather than a hospital. If you look at the Stampede website it lists which hospitals are involved with each arm. Same for the PSMA trial and others. Cancer Research maintains an up to date list of all trials going on in this country and which hospitals / consultants are delivering it. There is an annual conference for uro-oncologists where they are updated on how all the trials are going and what is emerging.

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

User
Posted 04 Mar 2018 at 16:46
We would never go near our district hospital in Northamptonshire again. We never saw the named consultant once. It took 4 months for them to diagnosis hubby's PCa.( GP had referred under the 2 week fast track)

It would have been longer had we not had to keep phoning up to find out about delays to appointments,tests and results. Had to go through PALS in the end to get anywhere. Even after his MRI they mistakingly sent him an appointment for 7 months later even although it showed 2 suspicious areas.

Also called us in for the biopsy results before they had received them from the lab.

However once we were referred to Leicester never felt that Tony could have been in better hands. The consultant and nurses are amazing.

Ann

User
Posted 04 Mar 2018 at 23:51
I laughed my head off at that, Lyn. And to think, I'm a teacher.

I'll close my eyes when the machine spins around me.

I'm still laughing.

Ulsterman

User
Posted 05 Mar 2018 at 02:03

Yes, spin is probably an exaggeration - I was sometimes allowed to watch John's session from the safety of a (probably lead-lined) viewing cabin and it sort of whirred slowly rather than anything else :-)

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

User
Posted 05 Mar 2018 at 07:56
The collimator head rotates slowly around the patient. Definitely not what I would call spinning!

You can also hear the “hum” from the high voltage supply making the high energy x-ray photons which blast the cancer.

I used to wait for the treatment team finishing any adjustments and knew when the high voltage sound kicked in those little sods were being zapped!

Below is a good description from the cancer research website.

“The LINAC has a device called a multileaf collimator. The multileaf collimator is made up of thin leaves of lead which can move independently.

They can form shapes that fit precisely around the treatment area. The lead leaves can move while the machine moves around the patient. This shapes the beam of radiation to the tumour as the machine rotates.

This means that the tumour receives a very high dose and normal healthy cells nearby receive a much lower dose.

Each radiotherapy beam is divided into many small beamlets that can vary their intensity. This allows different doses of radiation to be given across the tumour.

IMRT can also create a U shaped (concave) area at the edge of the radiotherapy field. This avoids high radiation doses to structures that would otherwise be damaged by the radiotherapy. “

I am a Physics geek so I like to know the detail!

Ido4

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User
Posted 04 Mar 2018 at 14:46

Hi Ulsterman,

I think it is difficult to compare hospitals and treatment as we all tend to have one main procedure and back up at our nearest hospital.

I had diagnosis at the Lister in Stevenage Hertfordshire and if i had gone for full radical removal it was offered by robotic surgery in house, but as i also had a second choice with another specialist on the same day i decided i wanted  Brachytherapy with him and he wanted to do the operation at Mount Vernon a leading cancer hospital in Rickmansworth near London and i had no problems with that,infact the operation and follow up was first class and i can't give enough praise for all the oncology team both at the Lister and Mount Vernon.

Seventeen months on i feel i have been given the best treatment that i could have had anywhere and as for other hospitals that could have given me better treatment i will never know.I am still happy with the ongoing treatment locally but they are mainly blood test for Psa results.

John. 

User
Posted 04 Mar 2018 at 14:49

Yes there are differences in outcome from region to region but it isn’t necessarily to do with whether you are under the care of a centre of excellence - more down to socioeconomic and environmental factors. Leeds TH is a centre of excellence for oncology and urology but outcomes in Leeds / West Yorks are worse than national average - traditionally industrial zone, lots of white working class men who (as a socio group) are less likely to seek medical advice until it is too late, plus complex (or not so straightforward) cases from others areas are referred on, e.g we have a couple of men on here who were treated at Leeds rather than in York or Harrogate or wherever.

The oncology centres of excellence are easily googleable but keep in mind that on paper their results might look not so great because of the complexity of cases and number of trials.

Not all hospitals have access to trials and it is sometimes a named consultant rather than a hospital. If you look at the Stampede website it lists which hospitals are involved with each arm. Same for the PSMA trial and others. Cancer Research maintains an up to date list of all trials going on in this country and which hospitals / consultants are delivering it. There is an annual conference for uro-oncologists where they are updated on how all the trials are going and what is emerging.

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

User
Posted 04 Mar 2018 at 15:48
John

I get treated at Wexham Park in Slough. They sent me to Mount Vernon for my choline pet scan. Can't complain about Wexham Park.

Lyn

Statistics, data, interpretation and misinterpretation. I'll stick with my team at Wexham Park which, as you know, have treated me well. But if I need further treatment after my SRT, I'll certainly keep a close eye on the clinical trials websites.

My daughter's training at York, and a friend's son is a radiologist at Leeds. I still fancy relocating to the Yorkshire Dales - love them!

Ulsterman

User
Posted 04 Mar 2018 at 16:46
We would never go near our district hospital in Northamptonshire again. We never saw the named consultant once. It took 4 months for them to diagnosis hubby's PCa.( GP had referred under the 2 week fast track)

It would have been longer had we not had to keep phoning up to find out about delays to appointments,tests and results. Had to go through PALS in the end to get anywhere. Even after his MRI they mistakingly sent him an appointment for 7 months later even although it showed 2 suspicious areas.

Also called us in for the biopsy results before they had received them from the lab.

However once we were referred to Leicester never felt that Tony could have been in better hands. The consultant and nurses are amazing.

Ann

User
Posted 04 Mar 2018 at 16:53

You could try to contact local support groups. From that you may gain what the service level is right now rather than historic data. However looking back I put too much emphasis on health area stats before making decisions where to move to or not. Wherever you want to move to go do it and good luck to you.

Ray

User
Posted 04 Mar 2018 at 17:11

I think it is worth checking what RT equipment they have at Wexham - I assume it is at least IMRT but would probably want one of the newer machines if it was John.

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

User
Posted 04 Mar 2018 at 20:35
Lyn

My radiotherapy will be at the Berkshire Cancer Centre at Brants Bridge in Bracknell. Surprisingly little information can be found about it online. It does have a linac machine but I don't know if that's now out of date or not. They do imrt. What are the most up-to-date machines/modes of delivery. What should I be looking out for?

Ulsterman

User
Posted 04 Mar 2018 at 21:45
Yet another thing to think about for me, I assumed that everywhere would use the same or similar radiotherapy beam machines but hadn’t considered funding/technology etc

I’m being treated at the Beatson in Glasgow and the machine called “truebeam” but I’ve no idea if this is advanced, basic or what. It spins around me as it delivers the dose of radiation

User
Posted 04 Mar 2018 at 21:57
Dear God, Bill. If my machine spins me around, I'll vomit. I can go on a rollercoaster, but even watching the spinning teacups makes me ill.

Lyn will hopefully tell us about the machines.

Ulsterman

User
Posted 04 Mar 2018 at 21:58
I had my salvage radiotherapy at the Western General in Edinburgh on a Varian Trubeam Rapid-arc machine which uses VMAT IMRT. I think the machine you mention sounds the same.

It is pretty much up to date technology I think with beams planned for maximum dosage to the tumours plus a margin and minimising radiation to healthy tissue.

This link describes it. Rapidarc

Ido4

User
Posted 04 Mar 2018 at 21:59
By the way, Bill. I did my degree at Strathclyde University. Lived in Glasgow city centre for a few years and then moved out to sunny Shettleston! That was an experience.

Ulsterman

User
Posted 04 Mar 2018 at 22:03
Originally Posted by: Online Community Member
By the way, Bill. I did my degree at Strathclyde University. Lived in Glasgow city centre for a few years and then moved out to sunny Shettleston! That was an experience.

Ulsterman

Ah sunny Shettleson, a lot of fine people there but far too much the opposite as it’s such a deprived area of Glasgow - interesting for you I’m sure

User
Posted 04 Mar 2018 at 22:33

The machine spins around you ... not 'spins you around' - pay attention Ulsterman!!!

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

User
Posted 04 Mar 2018 at 23:51
I laughed my head off at that, Lyn. And to think, I'm a teacher.

I'll close my eyes when the machine spins around me.

I'm still laughing.

Ulsterman

User
Posted 05 Mar 2018 at 02:00

Spins is rather a vague terms but to me implies rotating very fast. It's called rapid arc but is not that fast that you can't easily observe it's arc. Truebeam is one of the most advanced linacs but best results are partly dependent on the experience and ability of the those doing the preparatory work and administering the RT.

If further down the road treatments are being considered, it can be worth getting an opinion from one of the major hospitals, particularly those that are involved in a number of trials. The Royal Marsden is one of those from whom a few of our members have sought a further opinion.

Barry
User
Posted 05 Mar 2018 at 02:03

Yes, spin is probably an exaggeration - I was sometimes allowed to watch John's session from the safety of a (probably lead-lined) viewing cabin and it sort of whirred slowly rather than anything else :-)

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

User
Posted 05 Mar 2018 at 07:56
The collimator head rotates slowly around the patient. Definitely not what I would call spinning!

You can also hear the “hum” from the high voltage supply making the high energy x-ray photons which blast the cancer.

I used to wait for the treatment team finishing any adjustments and knew when the high voltage sound kicked in those little sods were being zapped!

Below is a good description from the cancer research website.

“The LINAC has a device called a multileaf collimator. The multileaf collimator is made up of thin leaves of lead which can move independently.

They can form shapes that fit precisely around the treatment area. The lead leaves can move while the machine moves around the patient. This shapes the beam of radiation to the tumour as the machine rotates.

This means that the tumour receives a very high dose and normal healthy cells nearby receive a much lower dose.

Each radiotherapy beam is divided into many small beamlets that can vary their intensity. This allows different doses of radiation to be given across the tumour.

IMRT can also create a U shaped (concave) area at the edge of the radiotherapy field. This avoids high radiation doses to structures that would otherwise be damaged by the radiotherapy. “

I am a Physics geek so I like to know the detail!

Ido4

User
Posted 05 Mar 2018 at 08:24

Ulsterman, regards Brants Bridge. I had my radiotherapy there a couple of years ago - and it is five minutes walk away which made it very convenient.... Initial diagnosis at Wexham Park, now under the oncology team at Royal Berks. No issues with any of them.
Brants Bridge was opened around 8 years ago. It has a single Linac machine which was what was new at that time - they have similar machines at Royal Berks where I went for one of my sessions. Apart from reliability problems (appointments always seemed to run late due to various problems) it did its job for me. The radiotherapy staff are shared with Royal Berks, you won't necessarily see the same people each day.
Popped into Brants Bridge on Friday for my blood tests ready for six month review next week. Was very quiet, even the urgent care centre was deserted, must have been the snow...

User
Posted 05 Mar 2018 at 10:07

Lining the patient up for the RT is comparatively easy; it is the preparatory work, setting up the collimator so the leaves are precisely set and the patient gets the exact dose of radiation for his individual specific tumour(s) that involves more calculation and skill. This becomes more involved with the need to minimize dose to critical organs.

Barry
User
Posted 05 Mar 2018 at 20:22
The hospital I attend, Preston, is part of the below update. Presumably the differences in kit are being reduced. I assume this equipment will be used for Prostate Cancer.

'NHS England has pledged an investment of £130m to upgrade radiotherapy equipment and ‘transform cancer treatment’ for patients across England.

Over the next two years, older Linac machines will be upgraded or replaced, ensuring patients get access to the latest technology regardless of where they live.

The investment will pay for over 100 replacements or upgrades of radiotherapy machines in hospitals around England.'

Ref Society of Radiology Nov 2016.

User
Posted 06 Mar 2018 at 22:29

Difficult choice. The Marsden has modern Varian TrueBeam machines and the radiotherapy departments at both Sutton and Chelsea were both rated as outstanding in the latest review. I am currently having SRT treatment there and thought it was worth the extra travelling. I am currently happy with my decision but don't know how the travelling will be towards the end of the treatment so it is very much a personal choice with different trade offs.

 
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