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Proton beam treatments

User
Posted 23 May 2022 at 19:45

Good evening , 

Hoping all are best as possible .

I’ve just been diagnosed  of stage 2 , Gleason 7 and have an operation for removal in 4 weeks . 

what are peoples thoughts on alternative treatments as in proton beam therapy etc……that side of things that differ from removal or radiotherapy. 

warmest 

Rob 

User
Posted 24 May 2022 at 14:44

If still in doubt, suggest you download or get a hardcopy of the 'Tool Kit' which gives details of treatments.
https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Edited by member 24 May 2022 at 14:45  | Reason: to highlight links

Barry
User
Posted 16 Oct 2022 at 05:46

For anybody considering Prague, please note my proton therapy treatment there went EXTREMELY BADLY.

For the first 4 days of my treatment I was at the centre for 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 second 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 in Prague.  I had to have part of my bowel removed due to the extensive and severe radiation it had received. They were not supposed 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 12 KG less than I was before commencing treatment, am always tired and am still in pain. Prague have not contacted me once since I finished treatment even though they undoubtedly know that they caused me great harm.

My advice would be think very carefully before you have proton therapy. I now think that it potentially  carries as many 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 Prague. Based on my experience I do not believe that it deserves it's reputation as one of the leading proton therapy centres in Europe.

User
Posted 24 May 2022 at 23:32
If you have a T1 T2a cancer at low gleason grade (G3+3 or possibly a G3+4 at low volume) it is certainly worth seeing an oncologist to discuss HIFU. You may also be a good candidate for brachytherapy which is tried and tested.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 May 2022 at 19:56

Hi Rob

i went down a similar route in 2019 and looked at proton beam treatment as an option. Unfortunately Prostate cancer tends to be multifocal. In my case after biopsy I was diagnosed with T2 3+3 prostate cancer in all four quadrants although thought to be localised. Focal treatments were off the table. I investigated all options talking to contacts both in Uk and abroad. Most views were to just have it out via surgery so I bit the bullet and found a high volume surgeon via recommendation. So far so good and surgery was less problematic than I had assumed.

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User
Posted 23 May 2022 at 22:04
Proton beam therapy has had good results as a salvage treatment for recurrence but in trials, its results as a primary treatment weren't very good. Its strength is in hard to treat cancers like brain tumours, ocular melanoma and for children who are too little for external RT. Perhaps a possibility if you are of a strong disposition and would be fairly pragmatic if it failed and a different treatment was needed down the line?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 May 2022 at 06:55

Thank you for your reply and greatly appreciative of your thoughts / take . 

I'm stage 2 prostrate and hopeful it hasn’t left the prostrate so was wondering if prostrate removal with all the added after complications was a bit like a sledgehammer trying to crack a nut approach . 
my thoughts currently  are I’d like it out as that seems to me more pragmatic if it hasn’t spread out then removal should solve my issue .

Also looked at focal therapy / HIFU but I guess they are more a mop up treatment not a stand alone although I know every approach to treatment can somewhat be different. 

I just want to make an informed decision and as I say I already have a date for removal in 4 weeks only being clinically diagnosed last week .
I must say I’ve been very happy with the speed of treatment thus far .

warmest

Rob  

User
Posted 24 May 2022 at 14:44

If still in doubt, suggest you download or get a hardcopy of the 'Tool Kit' which gives details of treatments.
https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Edited by member 24 May 2022 at 14:45  | Reason: to highlight links

Barry
User
Posted 24 May 2022 at 23:32
If you have a T1 T2a cancer at low gleason grade (G3+3 or possibly a G3+4 at low volume) it is certainly worth seeing an oncologist to discuss HIFU. You may also be a good candidate for brachytherapy which is tried and tested.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 May 2022 at 19:56

Hi Rob

i went down a similar route in 2019 and looked at proton beam treatment as an option. Unfortunately Prostate cancer tends to be multifocal. In my case after biopsy I was diagnosed with T2 3+3 prostate cancer in all four quadrants although thought to be localised. Focal treatments were off the table. I investigated all options talking to contacts both in Uk and abroad. Most views were to just have it out via surgery so I bit the bullet and found a high volume surgeon via recommendation. So far so good and surgery was less problematic than I had assumed.

User
Posted 01 Jun 2022 at 11:55

Hi Rob

 

I would undertake your own treatment research on possible options. Due to the NHS most Urologists adopt tradition methods of treating prostate cancer which do have potentially significant side effects.

Read my post re focal treatment and use of IRE.

 

Good luck

User
Posted 16 Oct 2022 at 05:46

For anybody considering Prague, please note my proton therapy treatment there went EXTREMELY BADLY.

For the first 4 days of my treatment I was at the centre for 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 second 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 in Prague.  I had to have part of my bowel removed due to the extensive and severe radiation it had received. They were not supposed 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 12 KG less than I was before commencing treatment, am always tired and am still in pain. Prague have not contacted me once since I finished treatment even though they undoubtedly know that they caused me great harm.

My advice would be think very carefully before you have proton therapy. I now think that it potentially  carries as many 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 Prague. Based on my experience I do not believe that it deserves it's reputation as one of the leading proton therapy centres in Europe.

User
Posted 16 Oct 2022 at 17:28
What a horrendous experience, compounded by the attitude and lack of follow up! People may remember the good result achieved in Prague with Ashya King, although this was for a head cancer. Maybe Prostate cancer posses a bigger challenge. Though of only academic interest to member Severn now, I wonder if others have had similarly bad experience of Proton Beam for PCa at Prague.

Best wishes,

Barry
 
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