Originally Posted by: Online Community MemberHi, thanks for your reply, it’s very much appreciated.
My hospital doesn’t have robotic surgery, my consultant said Hifu treatment doesn’t have enough evidence.
The only option is radiotherapy, I’m trying to establish if the choice is down to my postcode!
60 miles north or south of me, Robotic Surgery is given. Friend of mine received robotic surgery on Tuesday - Gleason 7 (3+4) T2. He only had half his prostrate removed!
With a T2, it is more likely that your friend has misunderstood the surgery he just had; sounds like he had a TURP which is not a curative treatment.
HIFU has good results as a salvage treatment when another primary treatment has failed but does not perform well in trials as a primary treatment, i.e. it rarely removes all the cancer and needs to be repeated. It is also more suitable to a T1 or T2a and really not a good option for a T3.
Some men have surgery with a T3 but it depends on where the break out is. If the bulge is near the bladder there is more chance of surgery getting it all than if the bulge is nearest the bowel, for example. So you can't compare yourself with 'other men with T3' ... you would need to know where yours is breaking out and then compare yourself with others that have the exact same diagnostics.
No prostatectomies are happening right now, I think, so if you are determined to explore that possibility further you have time. You could ask for a referral to a surgeon for a second opinion, perhaps on the basis that you would have surgery followed by adjuvant RT/HT?
Edited by member 09 Apr 2020 at 22:44
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
HIFU isn’t widely used as a primary treatment in the UK. With a T3 tumour I’d be wary of it, personally. If it misses some of the tumour and it then breaks out of the capsule, you’re in trouble. RT is a wide-area treatment which is much more likely to get it all.
Best wishes,
Chris
User
For HIFU on NHS, you will need to be referred to one of the cancer centres running the trial - it's not available outside of the trial as far as I know. UCLH and Basingstoke were two such (there are probably others), but they probably aren't running the trial during coronavirus.
I think T2a is the limit for what's treatable via HIFU, and it might need to be posterior rather than anterior positioning. (This is what I vaguely recall from a talk at UCLH, but I might not have remembered it correctly.)
User
Thanks for that.
slightly confused by your comments re my friend?
I don’t think he’s got that wrong!
my private consultant has looked through my MRI Scan and results and report along with a fellow consultant!
User
Lyn means that nobody only has half their prostate removed in a prostatectomy; they always remove the whole thing. If he only had a portion of his prostate removed, that’s not a prostatectomy!
Best wishes,
Chris
User
Thanks for your reply.
My MRI Scan and report has been looked at by my private consultant along with one of his fellow professionals, experts in this field!
Having looked at the above, they can offer me Hifu subject to my pathology report.
User
I’d certainly ask your consultant what percentage of his HIFU patients have subsequently required salvage treatment and then compare that to the figures for successful outcome of RT. As noted previously, HIFU isn’t a treatment which has a good record as a “permanent fix”.
Best wishes,
Chris
User
What is not clear is whether the OP would accept open Prostatectomy because apart from quicker recovery and smaller scars with robotic, there is not much to choose between results of the two methods or is surgery being ruled out for other reasons? If it is because cancer is beyond where surgery can remove, I would have thought it could not be satisfactorily treated with HIFU either but RT can go further.
Just one thought about the friend with supposedly half a Prostate only removed, if not a TURP (a sort of boring out procedure). another possibility is that he had nerve sparing and this was taken as being the Prostate was only partially removed.
Barry |
User
Thanks again Chris.
I’m keeping an open mind on all options. I’m determined to make judgment based on facts.
can you show me evidence that supports the negative results from Hifu treatment?
Any solid evidence is very welcome by me.
I think the options should be explained better by NHS staff, I find my worries are based around all this!
User
You can find solid evidence yourself, by reading the PCUK toolkit, listening to your own consultant and / or a basic google search.
HIFU is only available in a couple of places on the NHS for a reason - they don't have loads of cash to spend on treatments that don't work as well as others.
You said above that your own consultant has told you that your best option for your T3 tumour is RT and that HIFU lacks evidence. There are members here that have had HIFU or other focal treatments but I think all have had a recurrence and needed further treatment despite being diagnosed with much earlier stage cancer than yours.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
It would also be worth giving the PCUK nurses a ring on the Freephone number at the top of the screen when the phone service reopens after Easter and talking to them about it. They are extremely knowledgeable, and can give you impartial information.
One of the issues with consultants is that each is a specialist in a very narrow field, so there's a natural tendency to steer the patient towards their own area of expertise. Do make sure that you talk to an oncologist about RT as well as your HIFU consultant; you may well get different perspectives on the optimal treatment from each.
Best wishes,
Chris
User
Thanks again for this information.
I’m very interested in what your saying on Hifu treatment!
It leaves me baffled!
I don’t doubt what my NHS consultant has said, but it’s completely opposite to the consultation I’ve had with my private consultant!
I’m still trying to work out why he would say this. After all his daytime employment is NHS!
User
Originally Posted by: Online Community Member
I don’t doubt what my NHS consultant has said, but it’s completely opposite to the consultation I’ve had with my private consultant!
I’m still trying to work out why he would say this.
Well, the fact that he would be able to charge you for it might be a bit of a clue?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Do you genuinely believe that someone in the position he is in would do that?
I have found him very professional and very knowledgable. I would say exactly the same of my NHS consultant.
I think I’m a good judge of character, my own professional life required that as a minimum starting point. I want to end this conversation now. Thanks again.
User
Hi Westride, I had a prostatectomy 3 weeks ago and pre operation was given a diagnosis of gleason 3+3=6 and stage T2, however after the op the histology showed a gleason score of 3+4=7 and T3a. I had a huge dilemma pre op as to what treatment I should have and seriously considered HIFU. I had a discussion with a private surgeon in London who provided surgery, RT and HIFU options. His opinion was that HIFU is only really effective if the cancer is in one area only of the prostate and a good mri scan should be able to determine this. As mine was in various places then HIFU was not an option as a high probability of cancer re occuring. I wish you well with whatever option you take.
User
Hi AndyEv.
Thanks for your reply, this is exactly the type of information I’m looking for.
My MRI Scan has been looked at by my private consultant along with his own radiologist. They both think they can offer me Hifu because the MRI Scan shows cancer on one side.
Do you think you would have opted for Hifu if your cancer had been on one side only?
User
I was Gleason 7 and T3a at diagnosis. I was recommended surgery by both oncologist and urologist. My age was a major factor in this - I was only 46. After surgery, pathology was pT3b and Gleason 9.
Ulsterman
User
I spoke to my private healthcare and they were prepared to offer HIFU. I researched every area I could on it and the Specialist Nurses on this website sent me some research papers and gave me some really useful other information on it. It was a serious consideration of mine, however I would have had a discussion with the professor in London who cant be named on here who specialises in HIFU treatment before deciding. My only reservation with HIFU is that it is not as well researched as RT or Prostatectomy and although some of the research looks good I would have wanted to see more of the longer term success rates. Also in hindsight my prostate histology showed a higher grade and gleason score and some cancer in areas the MRI didn't quite pick up. It is a difficult decision for you and until my options were reduced I was in a similar position to you. I weighed up every option, spoke to family, took good advice on this community, spoke to the specialist nurses and importantly had a couple of professional opinions from specialists I deemed very experienced in the field. For me it was between HIFU and RP. RP won due to the extent of cancer in the prostate. I wish you well.