Further Treatment this year?

Hi Barry,

Your pursuit of new treatments for over 12 years and from over 200 miles from London is an example to us all.

I'm not sure why, it could be it lost its formatting, but your profile is one big paragraph making it hard to take in.   It's an exemplary read for anyone looking out for new treatments.

All the best,
Peter

My profile was duplicated too.

A recent post was triplicated, and each time I edited it, I could not delete the previous comments.

Why PC UK persist with this home-grown, second-rate, bulletin board format when other much better BBs are available off the shelf, I will never know.

Cheers, John.

There is a section called ‘forum’ which is a bulletin board, and he has just told me he paid $160 plus VAT for the bulletin board licence a couple of years ago.

Where did fifty grand come from?

Cheers, John.

There was a problem with thanks not showing at all to the post writer. 

They did a fix around a year ago.  Now if you look at your own post you should get a green box around it if it's been thanked.  Although it doesn't show the number of thanks.   Other people looking at your post can see the number.

You can see how many thanked you by looking on your profile but you don't know who thanked you.

Thanks have a number of uses not all good, they can be used for bullying.

I've done websites as a volunteer for local charities for 20 years and found bulletin boards a bit of a law unto themselves.  The perfect one is very elusive and after trying a few I now say use a secret Facebook group if you want a bulletin board.

This may have a few glitches but it seems pretty good and quite fast.

Barry you are the most amazing researcher ever and the biggest help we could have received in the three years since diagnosis. I have clicked thanks on every post and hope you know that!

interesting to me that the photodynamic therapy news hit the press the day after A’s initial diagnosis in Dec 2016. The lead is his monitoring professor too.

iI like reading about developments are you are the absolute best at providing updates. 
Thank you

Bollinge 

prob reason of keeping in houses are driven by IT resource available v security. Easy to outsource these things but risks of going cheap mean it’s for a reason. Ie what backend is being used plus how secure it and and ongoing data protection measures taken to ensure a duty of care for all plus compliance/audit stuff (confidentiality, integrity and availability)? For my sins I spent over decade doing this kind of work across all sectors. Costs can spiral putting in new systems and ensuring they are fully maintained over time. Plus employing half descent staff etc

As regards surgery and radiation, each in it's several forms, there have been improvements over recent years which for suitable men provide the most successful radical way of dealing with PCa, albeit often with varying degrees of side effects. Some men are not suitable for surgery or radiation or prefer a focal treatment with less extensive side effects which may be successful or defer the day when they need more radical treatment. The other time where focal therapy can be helpful is as a salvage treatment. There are a few other treatments that fall outside this category such as Irreversible Electroporation also referred to as 'Nanoknife'. The long term effects of these treatments have yet to be evaluated and compared with the long established surgical and radiation procedures (which have also improved over the last decade especially). So anybody reading this should not consider any of the new treatment options are better or necessarily as successful as surgery and radiation treatment but may prove a good answer in certain circumstances. It is to be hoped that in the not too distant future a way of treating men with PCa will be found that avoids all this brutal radical treatment, even some of the effects of some systemic treatments. One leading Urologist has speculated that this might be facilitated by introducing a virus which would attack the cancer or carry something to it that would attack it. Meanwhile, the clinicians have to work largely with the tools they have, sometimes using them in combination.

Perhaps even more important is the need to be able to distinguish more reliably between those men that need treatment from those where treatment can be deferred. Patient profiling may help and other ways are being explored. There are many trials looking at various aspects of PCa in many countries, some multinational but there is still a long way to go and so much to be found out.

I was very disappointed when Clare's husband found out his FLA treatment for early and low Gleason grade PCa proved unsuccessful both for him and potentially for me. We know that all treatments have failures but he seemed such a good candidate for FLA and I will look at this very carefully before adopting this option.  Meanwhile, I will have to see what UCLH have to say about other options.

Edited by member 15 Jan 2020 at 19:35  | Reason: Not specified

Clare

Retzius RARP + NeuroSafe sold it for me. And on weeks 7 has done its job coupled with the safe hands of the Prof whocannotbenamedonhere. I probably would have gone focal with the UCLH crew if it had been a viable option. But pleased I hit the trigger and got it all done end of November. 

Best of luck and keep us all posted

TG

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!

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