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.
Hi Fu and Cryotherapy are not mainstream treatments and there is not too much info available about long term success rates.
If u are going private be wary of the sales pitch.
I am sure that there are success stories but be careful and do consider the other options including surgery and Radiotherapy.
I had the latest Radiotherapy treatment and although had some side effects at time of treatment all is OK now.
Good luck with whatever you decide
Thank you for your help. Yes, I am wary of the sales pitch and won't jump.
I'll continue to gather feedback.
That's great you've had a good outcome.
At your age, with a cancer defined as 'curable', you'd be wise to go for a treatment that has the capacity to cure.
PCa is a marathon; 50% (probably more by now) die of something else before the prostate cancer gets them, and while you may never find out until the end, you may be one of the lucky ones who never gets a recurrence (Cures happen, but there's no way to actually 'prove' you're cured, except that it hasn't recurred).
Only surgery and radiotherapy offer the possibility of a cure. Nanoknife doesn't, nor does HIFU. Both have their place, both offer a measure of 'control' of the disease (their word), but not a cure. Useful in recurrence.
Choosing a non-cure means you are signing up to a lifetime of intervention, and - worse - a lifetime of looking over your shoulder for the next recurrence that needs to be 'controlled'. And once the cancer starts to metastasise, neither will work.
Important to note that most of the research on HIFU has been on patients who would otherwise have been on 'active surveillance', with no intervention at that time; even then, the majority of patients needed further treatment, some of them radiotherapy or surgery. Of course their 'need' for that would have been delayed by the HIFU, rather than ASAP. And no study has exceeded 10 years (Most are five years). PCa is a 20-30 year disease.
If it's curable, go for a cure. Don't mess about making someone rich!
- - -
A healthy-looking decrepit, 69-year-old male, mentally alert but forgetful. I no longer have an urge to choke people who say "all you need to beat cancer is the right attitude" - better to smile and move on.
Hi, Thank you very much for your detailed reply. Definitely food for thought. The treatment pendulum swings back and forth, somewhat depressingly so. But I'll keep my pecker up (so to speak...!).
I learned a lot from your note - thank you, wise words.
Your Gleason is very low so Nano knife could work.
I had looked at it and what stopped me was the Gleason score of mine of 9.
I had spoken to Vithus clinic in Germany but in the end decided that the recurrence risk was too high for my Gleason.
I did RP which went reasonably well,problem is my PSA was 0.09 and is now 0.21 which is the limit for possible curative therapy.
So am now doing RT as well and it scares me regarding possible side effects.
I would not do RT as first choice as operation after becomes very dificult.
I recommend reading Munson's book about fighting Prostate cancer and a possible recurrence.
All the best
Hi, thanks for your comments. I'll read Munson and thank you for the pointer. I did not know that radical prostatectomy after radiotherapy was difficult. I'm still finding my way. I'll be seeing the urology professor next Thursday (28th) and the oncologist on the 2nd. Meanwhile I have given permission for the HIFU people to view my records. I have learned a lot already and at the moment consider myself very lucky to have discovered the illness early - actually, by a chance comment to my doctor that I was having to get up 2 or 3 times a night. The diagnosis started then, albeit delayed & protracted by the pandemic.
The side effects scare me, but my driver is to try to be cancer-free.
I would like to hear from anyone who has had HIFU. The Focal Therapy contact spoke a good story, but I'm wary of a sales pitch (as mentioned above). They suggested that Nano knife was a good system but not as good as HIFU, the former taking two weeks for results whereas HIFU is safe and results are immediate.
I dare say I'll reach a conclusion, at the moment I'm flooded with info and facts about something I knew - and still know - very little about.
The responses here are filling gaps and are very much appreciated.
I am from Singapore. Three years ago around this same time, I was diagnosed with Colon Stage One. Had surgery and now cleared of it (fingers continue crossed). As if that was bad enough, during my regular follow up on the Colon two month ago, I did a PSA test. It showed marginal elevated figure of 4.9. Making the long story short, I had Gleason score of 3+4 on one part of the prostate and 3+3 somewhere nearby.
No doubt, I was like you, searching the entire web for information and treatment. My doctor explained to me several options. Radical, Radiotherapy and HIFU focal. He did not do much sales pitch but just explain as a matter of fact all the various pros and cons of different options.
Again cut the long story short, I opted for HIFU Focal. The facts I gather was it is relatively new technology (20 years). The comforting thing is two years ago it was approved by US FDA (should I trust them, I am not sure). Overall the statistics for the past twenty years patients opting for HIFU seems reasonable for me.
So, exactly one month ago, I had this HIFU focal surgery. GA for about 2 - 3 hours. From "surgery point of view" I must say it is relatively painless comparing to my colon surgery three years ago. I was discharged the following day with catheter inserted through my genital. This is only for a week which after that it was removed. So it has been a month since then. Now I am leading a normal active life, play tennis, go jogging. I don't feel any incontinence at all. During this healing period, I see blood in my urine which is perfectly normal for a while after HIFU.
I cannot say for sure this HIFU treatment is successful of getting rid of the cancer. I will need to see doctor again in three months time to check the PSA and six months to do a MRI again. Please pray for me...
Overall, my points:
1. This treatment is the least invasive and not the sort that removes everything from your body (not like radical). Personally (note: personal and not based on statistics), I felt that HIFU will have a lower percentage of incontinence compared to radical... meaning less chance of quality of life affected.
2. To me, even if HIFU does not give a good result, I still have the option to go for radical. Therefore I think if you have private insurance coverage, I think it is worth going for it. (sorry to say this to the insurance people)
3. Just like many medical technology in the past, they always have a beginning. If HIFU was develop last year, I would have say NO. But since it is already been around 20 years, why not?
Colorectal survival and will also survive Prostate.
Thank you so much for your comments on HIFU - I was really hoping to hear from someone who had had this treatment. Your timing is good too as I have a video call with the HIFU surgeon tomorrow - arranged very quickly, as I only emailed last Saturday and they have my records from the hospital already.
Your summary and personal views are what I've been concluding. I'll contact you with an update.
I hope everything works well for you and I am very grateful to you for taking the time to write, and to share your experience. Yes I will pray for you & very best wishes.
Kenny (Benny is a nickname)
colorectalsurvivor said:But since it is already been around 20 years, why not?
No-one is denying its short term benefits, nor it's 'gentle' side effects profile. They're good.
But I have found no research that follows people up for more than a 5 years. None. If you have, I'll be happy to look at it.
Prostate cancer can be a 20-30 year experience; it's not just the immediate effects that you need to think about.
Don't forget that cancer advances, not just in terms of tumour size, numbers of metastases, location of spread.
Cancer also advances at a cellular level; the prostate cancer cells become less 'differentiated' over time, until at a later stage, they're simply 'cancer cells'. This means that targeted chemotherapy - and hormone therapy - is no longer effective. Many people with stage 4 disease reach that point.
If you 'control' your disease rather than set out to cure it (where cure is an option), you face the day when the cancer cannot be controlled any more. It's not prostate cancer that kills, it's the metastases. And even it's supporters don't claimthat HIFU can help there.
You have to treat PCa as if you'll have it for life (though, of course, we all hope for cure). So if the cancer is deemed 'curable', and you're young, then go for a treatment that has a high chance of 'cure', not one that merely suppresses the disease, requiring further intervention later.
You don't say how old you are, or what your TNM stage is; both are relevant in a decision on the best way to go.
Hi, Thanks again for your message. I am 66, fairly fit (run regularly although not lately - calf's gone, my Achilles heel so to speak). I will ask the surgeon tomorrow if he has supporting research for longer-term HIFU patients and let you know the outcome. At the moment I'm not sure if I'm suitable for HIFU anyway, although they suggested I was - now that they have the records I'll know shortly.
The website states this:
Might be down to sheer luck. I will be seeing oncology and urology professors soon. I suppose I'll make a decision then, I don't want to wait & see.
Thanks again - really appreciate your help.
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