Got my head around diagnosis but concerned about my lovely hubby getting the best radiotherapy treatment. Anyone know Weston Park please

Hi Babycham,

everyone “wants the best available” treatment, but unfortunately NHS locations offering this (MRI Linac) are VERY thin on the ground.

There is a half-way house called SGRT – but this too is not widely available, but more so than an MRI Linac.  An MRI Linac is a complete new machine – I have seen a cost of £3.5M quoted, SGRT is an add-on to more modern Linacs at around £300,000 a go.

SGRT offers much more accurate placement of the radiation beam. I had this and one great benefit was no daily enemas as the beam is so much more accurate that it is thought to be of much less danger to the rectum. No “spacer” needed which I think you have to pay privately for ?? You don’t need tattoo aiming marks either – and if you move during treatment the beam shuts off. I may have been lucky, but I had no attributable side effects to the RT at all. I felt the same after twenty 90 mile train/bus round trips as I did at the start

I had never heard of SGRT until I was referred to a hospital with 6 of these machines (fitted to Elekta Versa HD). Brilliant !!  Do ask if it available in your area.

https://www.bbc.co.uk/news/uk-england-hampshire-68688198.amp

I have searched the web, the nearest I can find to you is Manchester - but there may be others.

I believe there are about 62 cancer treatment centres in the UK, somewhat less than/around 20 have SGRT…….very difficult how to find out who has what – as you have found out.

There is no great hurry, if your OH has just started on Bicalutamide, they will wait for a while (3 months + ish ???) before they start the RT, in this time the Bicalutamide and the (following)  Prostap will shrink the tumour (smaller target, less radiation needed to zap it) and his PSA will drop markedly.  Mine went from 16 down to 0.9 in that time.

Good luck, do let us know how it goes.......your experiences will help others.

Hi BC

I had the gold markers with a mix of IMRT and IGRT Linac in 2017, it went well, I would have thought most hospitals would offer this now, suggest you ask at the hospital what they do offer

I think SGRT is the latest technology but not available everywhere...yet

Best wishes 

Steve 

Hello Babychamshine, we all want the very best of care and yet our trust in the NHS has been undermined by the repeated scandals etc on the news media. Like you, we didn’t have easy access to any centres of excellence for the radiotherapy and just had to hope that our local trust would deliver. Like you, I did my research into machines, methods etc etc. here are some of the responses and care my husband received 3 years ago:

gold seeds ( fiduciary markers) - these are ok but they are known to move inside the body so not 100% reliable

Space Oar gel to protect the bowel - only available privately unless you can get on a trial

Brachytherapy - we don’t do it here, you would have to go to Lincoln

fractions - 20 over 4 weeks with tattoos, empty bowel ( daily enema) and full bladder

care delivery - excellent! Professional, on time and the best care possible.

results - now off ht and so far PSA remains low but always increased anxiety at 6 monthly PEA testing time

side effects of radiotherapy - tiredness for both of us due to driving there and back each day. My husband was very tired for about 6 weeks after RT too and had some urgency - ‘when you gotta go, you gotta go’.

anxiety - great and excessive anxiety for me which, looking back, was unnecessary!

What was missing? They did not prescribe calcium and vitamin ad supplements as they ought to have done and my husband now has osteoporosis. They did not warn us about the risks of ongoing erectile dysfunction and I think they should have done.

I hope this helps and hope that all goes well for you both xxx

^worriedwife:"What was missing? They did not prescribe calcium and vitamin ad supplements as they ought to have done and my husband now has osteoporosis."

While my place and course of treatment in mid-2021 was I thought pretty much in line with contemporary best standards, despite c.30 months of HT before , during and after EBRT, I was not told about effects on bone density nor advised to take any counter measures.

Now I am in recurrence it has been checked for first time and yes osteoporosis taken hold. 

Does make me wonder about other missed aspects of diagnosis and treatment that might have delayed recurrence.

But can't turn clock back...

Good luck all, 

Dave.

Hello Babychamshine613e2e 

Let me throw my hat into the ring. Like your other half I am a T3aN0M0 but with a higher initial PSA of 182 and no bone spread. My urology was North Manchester General but on transfer to oncology it was The Christie Manchester who have an outstation The Christie at Oldham - happy days. I was happy to have my radiotherapy at the 4th best cancer hospital in the world.

I had 20 fractions totaling 60gy to the Prostate and Pelvic lymph nodes on one of the VMAT machines at Oldham.

Yes I had the 3 tattoos and the enema before each fraction, however at Oldham we were empty bowel, empty bladder, so no water to drink. 

The only side effects I had were a bit of fatigue and increased "flow" towards the end of the 20 fractions - 3 years on I have no lasting side effects that I am aware of.

At the time of my treatment I was happy to accept the treatment I was given. I did ask questions as we went along and was aware that there can be complications with after effects of radiotherapy - but there are consequences to any actions in life - and as this was going to "make me better" I accepted what I was offered.

The Radiotherapy staff were brilliant throughout and I can't fault them.

I am a firm believer if you are going down the HT/RT route you do need (as advised by Worriedwife) a prescription for calcium and vitamin D tablets as HT/RT can weaken your bone structure. 

I do hope the above helps - happy to answer any questions,

Best wishes - Brian.

I live in Sheffield andhave been a patient at WPH since Jan 2023 .In general terms I cannot speak highly enough of the team there from top oncologists to all the support staff.

I have not had radiotherapy so I cannot comment directly in answer to your question.

However,when I was in a particular quandary I also paid for a consultation at Thornberry Hospital to get independent information.I found Mr Paul Skinner to be most helpful and reassuring on my particular issues .The trouble is that we as patients are offered options that we are not qualified to understand and there will be a wide range of experience from one person to another.

Thank you.  It appears that Weston Park very recently installed new machines and as far as I can determine they use VMAT and stereotactic radiosurgery for precise cancer treatment. whatever that means lol.

They offer SGRT but I don’t know if they offer it for prostate  cancer.  It appears that Leeds hospital currently offer SGRT for breast cancer and will be rolling the treatment out for prostate.  It is difficult to find out who does what but I did find Sheffield Teaching Hospitals were included on the government website that lists trusts benefitting from new investment.  Fingers crossed.

I see no reason not to research what is available and where.  Remaining ignorant is not an option at our house.  We’re all entitled so seek the best wherever possible.

If we’re offered SGRT and don’t need a spacer that’s great.  We would be willing to pay if we do need one.  

You’d think I was also having my prostate zapped wouldn’t you but I see it as a we and us thing.

Thanks again

Hi again Babycham,

you state: "It is difficult to find out who does what but I did find Sheffield Teaching Hospitals were included on the government website that lists trusts benefitting from new investment."

It is difficult, I totally agree, but I fear that difficulty also applies between hospitals. I was refused RT at one hospital - it was obvious from their comments that they didn't have much idea what capabilities other LARGE hospitals, in the general area, could offer - the best I got was " ******* might be able to help" !  As I said earlier I didn't know that the final RT hospital even had such clever equipment as SGRT until I got there for my Planning Appointment.

Also: SGRT was/is (?) not funded by the NHS as it is not a "new" treatment only an addition to a existing one. My nearest RT capable hospital does not have SGRT (2 Linacs) but is running a charity campaign to fund it at the moment.

You could do worse than doing the rounds of your local treatment centres (find on the web) and asking at the radiotherapy front desk what equipment they have installed there.

Perversely - I may have been lucky that my diagnosing hospital has no RT equipment and that they had to refer me elsewhere. If they had RT equipment it is most likely that it would not have been SGRT. Now I do feel that I really did have the best treatment available

Thanks 

I gave up trying to reach the radiotherapy department at sheffield today but will try again.  The line is constantly ‘busy’.  I will try again.  As you said, there’s no great hurry at the moment.  Everyone should have access to the best care but …………

thank you again