I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

<12

Further Treatment this year?

User
Posted 17 Jan 2020 at 00:21

Hi Clare

Can understand that completely having had one in for 15 days. I got used to it after a bit and the clip lock things for the leg made a huge difference. I had one on each thigh so I could alternate when one side got sore. Switching around and emptying a pain for a bit. 

Hope everything goes ok

cheers

TG

User
Posted 17 Jan 2020 at 17:57

Interesting, apparently no bag in the day with this catheter planned for next week. A tap and he goes to the loo!

a bag for night though. That’s different to last time!

User
Posted 11 Feb 2020 at 00:25
True to her word, the nurse I spoke with in my last telephone appointment with UCLH arranged for a senior Consultant to contact me. She was the person who gave me HIFU in 2015 and is Chief Investigator for the SpectraCures P18 Trial and I rather hoped she would say I would be a suitable candidate for this. Unfortunately, the previous treatment I had precludes me taking part in this trial. She then said something that came as a great surprise. She said that if an MRI showed my cancer was confined to my Prostate and had not extended to the seminal vesicles, she would give me HIFU again! This was most surprising because the top Focal expert at UCLH had previously told me a year or so ago that they would not do HIFU on me because of the position of the tumour and due to calcification making it difficult to focus the HIFU instrument. Indeed, he said I had already had two major treatments to the Prostate and "we would not treat it further radically". So a volt-face there, although I was cautioned that there would be a greater risk of a Fistula forming with further HIFU.

I accepted an MRI and will see what this shows. I don't believe TULSA-PRO is done at UCLH but if I get my forthcoming MRI scan put on a disc I could send it to a contact I had in Heidelberg where they participated in a trial (now closed I think) of this form of ultrasound treatment. I would then have an opinion on whether this might be a better option than HIFU in London, although it would mean going to one of the treatment facilities in Germany or Finland. Another possibility is to have Focal Laser Ablation in the USA which I think is less proven than ultrasound albeit with less collateral damage and going to the USA would cause other problems for me, It may be that I have to settle for HT but only if there is no other viable alternative. The struggle continues!

Barry
User
Posted 11 Feb 2020 at 09:58

More great reading Barry, yours is a story to follow.

User
Posted 11 Feb 2020 at 11:39

Thanks for update, you are a trailblazer. I hope the scan shows you can have further radical treatment provided the risks are acceptable.

 

Ido4

User
Posted 11 Feb 2020 at 14:39

I guess Proton Beam not in scope? The Rutherford centres look interesting but not cheap. I looked at it but decided probably not that relevant as mine very much multi focal. The precision is interesting although I realise there are sceptics out there.

User
Posted 11 Feb 2020 at 15:11
All sounds very interesting Barry. I know you don’t want the systemic route like myself if there are other options. Good luck

If life gives you lemons , then make lemonade

User
Posted 12 Feb 2020 at 00:11

Thank you for your kind thoughts friends.

TechGuy

I did wonder about Proton Beam as there is virtually no damage to cells after the targeted tumour although some small damage building up to it to it. (The Bragg Peak). However, I have already had 30 x 2 gy of IMRT plus 6 x 3 gy of Carbon ions (where the latter pack more punch than Protons) directed at my Prostate and I doubt very much whether anybody will give me more RT or Hadron Treatment to the Prostate. The last MRI I had revealed a tumour thought to be the size of a grain of rice and before doing the subsequent template biopsy just over a year ago the surgeon told me he would do well to 'hit' it. In the event he did and the following PSA was the only one since that that has not produced an increase in PSA. I reasoned that the fall could have been because part of the tumour had been removed in a biopsy core. I thought if the probe used to remove the core had been rather larger, perhaps the whole of the tumour might have been 'grabbed' but perhaps no suitable instrument is available or there are other reasons why this is not feasible. The tumour is very close to my rectum, "there's the rub".

Notwithstanding the foregoing, if nothing additional shows up in my forthcoming MRI, when I send my Scan to Heidelberg to inquire about TULSA-PRO, I will ask whether they would treat with more Carbon ions or Protons. They have more experience than any facility in London and have a synchrotron to give either form of Hadron Therapy which the UK lacks as here :- https://www.youtube.com/watch?v=LeApaY7ctMo

I will only opt for treatment when I have obtained opinions on and assessed all that might be suitable.

Edited by member 12 Feb 2020 at 00:14  | Reason: to highlight link

Barry
User
Posted 12 Feb 2020 at 11:18

Hi Barry

Sounds like you have all bases covered. Would be pretty cool if they got it in biopsy core but as you say probably not big enough.

I know a chap that had ~9 prostate lesions  treated at Rutherford, Swansea with proton +spaceOAR. Seems to have had a good outcome thus far but I feel with the nature it the disease that more often than not it’s a game of catch up.

Best of luck with whichever path you choose and please keep us posted.

TG 

 

 
Forum Jump  
<12
©2025 Prostate Cancer UK