HIFU Focal Therapy

Good to hear you are doing so well, Robin!

Thanks again for your update, and best of luck with return to your Italian retreat!

Hi Robin

That sounds a really interesting and valuable exercise.  From the plethora of questions that we all have on the journey, it's a huge learning curve and you could offer a solution - or at least a very good start - to newly diagnosed PC sufferers, no doubt in shock and unclear what to do next.

From my own experience, while early on I researched as much as I could - and I'm touching wood as I write this - I genuinely feel that  ultimately I've been extremely lucky.  I believe that had I gone down the NHS route, where I was told that a standard operation was as good as robotic surgery, that I would not have had such a great outcome, at least so far.  

Funnily enough I received my operation note this morning - I would be happy to share the detail of the operation with you if of interest.  If anything like me, you might need a dictionary.....

For your TV channel, I have no experience of how to do this, or likely size of audience but I do know that modules explaining the different treatments, with risks, statistics and personal accounts would certainly have helped me, probably very significantly.  There is also the sales talk that is worrisome as one feels led along the garden path.  HIFU for me for example, which sounded great and was my Plan 'A', but when the London surgeon and team examined my MRI, they immediately concluded that the cancer was too extensive for HIFU to be an advisable approach, and that whole gland therapy with all its risks was the way forward.  I immediately agreed to proceed on this basis.

I also felt that the NHS radiotherapist and surgeon were vying against each other for business.  I have no evidence to support this conclusion, of course, but I did come away with that niggle which at the time made me feel somewhat despondent. 

I think what you are proposing would potentially be of great benefit, and I commend you for your work and initiative, but I am slightly concerned.  You would clearly need to have strong disclaimers and avoid advice at all costs, as we know that each individual is just that, different.  Would you / could you do this in conjunction with Macmillan for example?  This would attract a large audience I would think.  You're probably way ahead of this and as I say, I have no experience of You Tube other than using it to struggle along with my banjo....

Good luck.  If, even with my lack of technical knowledge you feel I can help in any way, please let me know, it would be a pleasure.

Best wishes,

Kenny   

Hi Robin,

well, they say 4-6 weeks the radiation in the seeds are at their peek. I’m guessing that you may just past that stage now, so how are you? Is the tiredness still an issue? Is there anything else that has surprised you about the treatment? 
I’m just 2 weeks from my scan to check prostate size and plan for the seeds, not quite at ‘squeaky bum time’ (as Alex Ferguson use to say) but I have to say it’s getting that way!

all the best and hope you are doing well.

Sorry Kenny, I missed your reply and thank you for the offer of help.

I have for the moment decided to shelve the idea, mainly because of lack of time, but also I think I should at least wait until May when I have my review and PSA results.

You are quite right about the disclaimers, but you also come up against EAT in the YouTube/Google algorithms.  It stands for  Expertise, Authoritativeness, & Trustworthiness. The search engines have the ability to assess if you have the qualifications and expertise to give advice and without it, the algorithm will not promote you and even block you, particularly now that they are trying to clean up the misinformation on their platforms and probably even more scared of being sued in the future. 

Having said all that, your idea of teaming up with Macmillan is a good one, as that would deal with EAT.

Anyway, if I progress it, I will let you know.

Hope you are keeping well

Kind regards

Robin

Tiredness is slightly improving but until I am off the HT, I think it will remain a feature.  Roll on May!

You really have nothing to worry about, the whole process is painless and what I would class as a procedure not surgery.

I would wish you good luck for the upcoming scan, but it is so straightforward that you do not need it.

Hi Robin

No problem and anyway I agree, best to leave it just now at least until you're fit and well, both mentally and physically.

Good luck with the project though, I think it sounds great and could prove valuable to many PC victims struggling with the multitude of choices.  I know I did.  Actually it's 6 months now since I first posted on MacMillan, it was my son who suggested I did.  Your responses and so many others were an immense help.  I feel so very lucky and strangely almost guilty that I've experienced such success with my treatment.  I hasten to say that I know I will be monitoring for the rest of my life and I'm touching wood !

To answer your question, I am much better thanks.  Leakage is not a problem now, 3 months on from the op I'm now on No. 1 pads.  Nerves have also recovered.

Although the weight I lost at the time of the operation has piled back on, and more, sadly (everything is a bit tight...), I am keeping quite fit and ran 11 miles on Saturday with the dog.  There is only one weekly run.  I am very slow, that took 2 hours but the key thing is that after runs I recover faster and feel much stronger - generally - than I have and for some years.  It's noticeable, tangible.

When you're off the HT I hope you have a similar result.  Good luck and please keep me posted.

Best wishes,

Kenny  

Hi Heinous

I had whole gland therapy on 21st December 2021.  Whilst I contracted a serious infection & was put on the wrong antibiotics, I have now recovered.  The operation was a success and my PSA fell to -<0.1  Less than 4 months on and leakage / nerves are now ok.  I feel much stronger and I am very glad that I decided on the prostatectomy.

I just wanted to thank you for your advice.

I hope all's well with you and thanks again.

Kenny

Hi Kenny

Hope all is well with you.

Just a quick update. Just received my blood results ahead of my post Brachy 3 month review and PSA is 0.4.

Obviously I am relieved and delighted, and hopefully I will be able to come off the HT.  

Robin

Good to hear of your super low psa level, Robin, you must be so relieved and chuffed too!

How are you in yourself? What about activities? Are you back to feeling normal, regarding tiredness and other stuff?

I have my brachy seed implants on Monday. The Royal Surrey are now back on general anaesthetic, they say it’s best as patient does not move at all, which they might with the spinal block injection. So Sunday is my ‘dynarod’ day, with the 2 sachets of picolax at the ready!

As Alex Ferguson once said ‘it’s squeaky bum time’ and that’s exactly how I feel.

all the best, one and all....

I am OK, and the treatment has not really stopped me doing anything, but I feel a lot weaker than I did and get tired easily with physical activity. I put this mainly down to the HT (with a little help from the seeds), so the sooner I can get off it, the better.

Good luck on Monday, you'll be fine, as you are in good hands.  Don't forget my advice with the Picolax, take it earlier than stated. The actual effects are not that bad, but you just want to avoid it working after you wake up after the procedure.

Let us know how you get on