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User

Posted 21 Mar 2019 at 13:59

Hello,

Has anyone been treated with Proton Therapy over the past year at the Rutherford Cancer Centre in Wales? Am considering this option for my Gleason 7 - Moderate risk cancer and would like some feedback. NHS are not currently offering this type of treatment, therefore, my options are Wales or Prague. Many thanks for your help!

User

Posted 21 Mar 2019 at 18:03

Hi Frank,

What is the full breakdown of your Gleason score, e.g. G x+y=z? What is the staging of your cancer, e.g T?N?M?

What do your consultants say about your cancer treatment? At first glance with the limited information you have supplied you would be a prime candidate for radical prostatectomy surgery, with what they call ‘curative intent’ i.e. to get rid of it altogether.

I don’t think proton beam radiotherapy has been extensively tested for PCa, as it is more frequently used for brain tumours. It is more precise than electron beam radiotherapy though.

Best of luck.

Cheers, John.

Edited by member 22 Mar 2019 at 09:57 | Reason: Not specified

User

Posted 21 Mar 2019 at 19:18

Hi,

My Gleason score is 3+4= 7, Grade Group 2, 2 small lesions, Intermediate Risk, Stage T2NONO.

I am diabetic taking insulin and I do not wish to suffer complications from surgery. I was interested in Cryotherapy, but Consultant was only going to treat the largest lesion and leave the other one to monitor. I was not happy with that option, as I want the whole gland treated.

Have spoken with various men who have had Proton treatment with similar Cancer Stage to mine 3, 4 and 5 years ago and are doing really well. They were treated in Prague.

I was particularly interested in comparing the Proton therapy offered in Wales, which opened end in 2018, with the one in Prague, operating for over 7 years. Therefore, I was hoping for some feedback from some men who had treatment in Wales.

Proton has not been extensively tested in the UK, but they have been using it very successfully in US. However, some of the Proton Centers over there still use the old Proton type of Beam, hence the data received regarding trials is quite misleading in my opinion.

Thank you for your concern and good wishes.

Frank

User

Posted 21 Mar 2019 at 21:26

Hi Frank

sometimes so called ”middle stage” cancers can take some agonising over what treatment to decide on. I was Gleason 4+5 T2c N0 M0 so my pathway was accellerated due to agressiveness. i was denied RP as i had 80% in one lobe and 65% in the other and RP was not guaranteed to remove all cancer cells.

in your case i would pusue the path you have chosen and i wish you luck

Edited by member 21 Mar 2019 at 21:26 | Reason: Not specified

User

Posted 21 Mar 2019 at 22:00

I am sorry to hear you couldn't have RP. Thank you for your response and I wish you all the best.

User

Posted 22 Mar 2019 at 01:10

Hi Francis,

Interesting that there is now a Proton Beam facility in Wales (Rutherford Newport), also that approval has been given for them to take some NHS patients. Are you sure that they are actually treating PCa even if you or your insurers pay? On the last point I see that BUPA refused to meet the cost of a woman wanting Proton Beam treatment because they argued that Proton Beam treatment was not sufficiently well proven for Breast Cancer. https://www.bbc.co.uk/news/uk-wales-45101472

I assume that the new treatment centre in Wales uses the pencil beam technology which makes for greater accuracy than the scatter beam.

We do have a member who was treated for PCa in Prague although he did subsequently need a further type of treatment.

Do let us know about where and what treatment you have.

Edited by member 23 Mar 2019 at 01:03 | Reason: to highlight link

Barry

User

Posted 22 Mar 2019 at 07:56

Proton beam therapy is not available for PCa patients in England because the trial data has not been good; its main benefit is as a salvage treatment where the results have been much better.

NICE has approved proton beam for ocular cancers, some inoperable brain tumours and head / neck cancers that are difficult to get to with a scalpel. It has also been approved for some childhood cancers where the child would find it very distressing to lie still for long periods to have radiotherapy.

I am surprised that Health Wales has approved proton beam as a radical treatment for PCa when they are so far behind England in many other respects.

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

User

Posted 22 Mar 2019 at 10:22

There is only one Proton Facility in Wales, The Rutherford Centre in Newport, for private and NHS. The Private Wing of this Centre does treat PCa and I have had various conversations with them regarding treatment plan. They do use Pencil Beam latest technology. I don't have Private Health Insurance, therefore I would be required to self-fund the treatment.

Am very pleased to hear that Health Wales have adapted a more realistic view on Proton treatment. I wish that I was living in Wales, so I may be able to get it approved under NHS there.

I would very much interested in talking to the member who had PCa therapy in Prague and subsequently needed further conventional treatment. Would you be able to put me in touch with him??

Many thanks!

User

Posted 22 Mar 2019 at 14:04

https://www.therutherford.com/treatments/proton-beam-therapy/

User

Posted 22 Mar 2019 at 15:07

Many thanks you for Link!

User

Posted 23 Mar 2019 at 02:27

Francis,

Firstly, apologies for concluding the second Proton Beam Centre was also in Wales, The source I got this from under Proton Beam Wales said there were two facilities in the UK but did go on to say the second one was the NHS one at the Christie in Manchester. I have therefore amended my initial reply.

As regards the member I had in mind who had treatment at the Proton Centre in Prague, and subsequent further treatment elsewhere, has the username 'Notabene' and his Bio is here :- https://community.prostatecanceruk.org/default.aspx?g=profile&u=27808

He doesn't post very often but could be PM'd via this charity if you have any necessary permissions .
He went on to have Lu 177 PSMA abroad at considerable cost which as a prerequisite required having a 68 Gallium PSMA scan to demonstrate he was a suitable candidate.

Edited by member 23 Mar 2019 at 02:31 | Reason: to highlight link

Barry

User

Posted 24 Sep 2021 at 08:43

I would not recommend proton theapy. My proton therapy treatment at the [Hospital name removed by Moderator] in Prague went extremely badly.

For the first 4 days of my treatment I was at the centrefor most of the day because they had great difficulty executing their treatment plan. I had severe bleeding from my rectum from the second day and yet when I reported this to the doctors at the centre they said it was because I had haemorrhoids which was untrue.

After 4 days I refused to continue with the treatment and they then eventually agreed to do a seond treatment plan . With the second plan they were able to do the daily treatments without any problems. However, the damage had been done. Towards the end of the 21 day treatment I started to feel very ill but the doctors at the centre continued to insist that it was only haemorrhoids. I barely made it on to the plane to get me home. When I arrived back I was so ill that I was immediately transferred from the plane to hospital.

I ended up staying in hospital for 5 months. The doctors at the hospital discovered that I had large deep ulcers in the rectum consistent with severe radiation related colitis. I had to undergo a 5 hour surgery where it was discovered that I had a hole in my bowel caused by the very inaccurate proton therapy treatment I had received at [Hospital name removed by Moderator]. I had to have part of my bowel removed due to the extensive and severe radiation it had received. They were not suppsed the be radiating my bowel at all. I got sepsis, double pneumonia and lost 25 KG in weight. I very nearly died. Nine months after my treatment finished I am still 12KG less than I was before commencing treatment, am always tired and am still in pain. [Hospital name removed by Moderator] have not contacted me once since I finished treatment even though they undoubtetly know that they caused me great harm.

My advice would be think very carfully before you have proton therapy. I now think that it potentially carries as many if not more treatment risks as photon therapy and it is of course much more expensive unless your insurance covers the cost. However, if you do decide to get proton therapy I would certainly recommend avoiding the [Hospital name removed by Moderator]. Based on my experience I do not believe that it deserves it's reputation as one of the leading proton therapy centres in Europe.

Edited by member 30 Sep 2021 at 14:37 | Reason: Not specified

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