Hi, I have just been diagnosed with early stage localised prostate cancer. I have not yet spoken to Oncology or Radiotherapy professors, that's due in a couple of weeks.
I am researching the options and saw HIFU Focal Therapy this on the web. I sent a message to them on Saturday and I had a 30min call today describing the treatment. From what I've seen, it looks like a no-brainer compared to the risks related to alternatives, including robotic surgery which sounds the best of the rest. I don't want to wait and see and radiotherapy looks risky.
I am 66, otherwise in good health and keep fit, still working, run 8 miles most Sundays and were it not for Covid had entered 5 half marathons this year (all postponed). I have organ confined prostate cancer Gleason 3+3=6 with a maximum core length of between 1.5 and 2cm. Prostate Cancer has been found on the Left hand Side of the Prostate Gland. (5 of 6 cores taken were positive) The biopsies taken on the Right Hand Side of the Prostate Gland were negative. I have private health insurance and the Focal Therapy clinic think I should be a suitable candidate.
I am somewhat overwhelmed by all the alternatives, including Nanoknife which HIFU states is not as good as its treatment which they say has a very strong success rate with limited issues prevalent in the alternatives.
Any views on this would be much appreciated, especially from anyone who has undergone HIFU Focal Therapy. Thank you.
Good to hear you are doing so well, Robin!
Thanks again for your update, and best of luck with return to your Italian retreat!
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.
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
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.
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.
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.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2020
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: 668265007