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Proton therapy is the Best

User
Posted 14 Mar 2018 at 13:57
Diagnosed in Mar 2017. Gleason score 10. Treatment with proton therapy in Sept 2017. Recent PET SCAN PROSTATE IS CANCER FREE!9!!
User
Posted 14 Mar 2018 at 23:49
Hi Monte

I’m glad your so positive about your treatment outcome

As for this forum it is difficult to make any comment or assessment of your experience without further details of your journey

User
Posted 15 Mar 2018 at 02:40

Hi Monte,

Your heading is a bit of a sweeping statement! Certainly Hadron treatment has been shown to be best for heads and neck tumours but the theoretical advantages for PCa have been less well proven notwithstanding the popularity of Proton Beam in the USA for this cancer. According to this analysis of studies, Proton Beam does not compare that well for PCa with some other treatments, especially low dose Brachytherapy with seeds plus EBRT.:-- https://prostatecancerfree.org/compare-prostate-cancer-treatments-high-risk/

All here are of course happy that no cancer was seen in your pet scans and hope that PCa is never a problem for you again. Furthermore, we wouldn't wish to dampen your natural jubilation with your result. However, it is still early days and Prostate Cancer in many cases does come back, sometimes even as much as 10 years or so later. Much, thoughnot all depends on the staging. I am a case in point where nothing was seen in my scans for 2 years post RT but by 8 years scans and a template biopsy identified a small tumour in my Prostate and there was possible spread to an iliac lymph node. (Incidentally, I had IMRT plus Carbon Ion boost, similar to Proton Beam but packing more punch in Germany).

Because we don't have Proton Beam for PCa in the UK it is particularly interesting to have a member who has had this treatment and we hope you will continue to let us know that you are doing well as time goes by.

Edited by member 15 Mar 2018 at 02:44  | Reason: Not specified

Barry
User
Posted 24 Sep 2021 at 09:05

Proton therapy at the [Hospital name removed by Moderator] is NOT the best by a long way. My 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 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 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 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 moderator 27 Sep 2021 at 12:38  | Reason: Not specified

User
Posted 25 Sep 2021 at 10:44

That all sounds horrific Severn. What was your initial diagnosis in terms of PSA, Gleason, staging? Thanks for sharing. 

Ido4

User
Posted 28 Sep 2021 at 05:24

Hi Ido4

I was diagnosed as T3a, Gleason 9. PSA 6.2. Avoid treatment in Prague . 

User
Posted 28 Sep 2021 at 09:36
Very sobering, hope you are able to recover soon. Thanks for posting.
User
Posted 01 Oct 2021 at 23:22

That sounds horrendous.  I have had proton therapy in the Uk and I’m glad to say the experience was all ok.   Before the treatment I had a spaceOar fit.  No passing of blood during or after treatment and I would say it was just mild discomfort for a couple of weeks.  The care of the staff  and follow up from the Rutherford has been excellent and so far all three psa tests have been fine.   I know I have a long way to go but you have clearly had the worst experience ever.   I hope that you continue to improve 

User
Posted 06 Oct 2021 at 11:59

Thanks 

I very nearly went to the Rutherford in the UK  but was concerned that they might have to close due to lockdown . Prague guaranteed that they would stay open. I had the spaceoar as well  but it did not protect me. 

 
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