Hello Marianne,
It is sad that the treatment your husband had did not work for him and highly suspicious that records were not properly kept. It is also appreciated that you added to this thread in your circumstances.
It is a fact that HIFU for PCa will not treat areas beyond the Prostate. This is also true of surgery where it is often found that if the cancer has gone beyond where the knife can cut, some other form of treatment will be needed. So this does not necessarily mean that surgery or as in your husband's case HIFU was a failure if his cancer had in fact spread beyond the prostate, perhaps this because previous diagnostic scans did not show it (It has to be remembered that scans have improved greatly over recent years but still do not always show the full or possible extent of PCa even now).
I did quite a bit of research on HIFU among other treatments in 2007/8 when I was first diagnosed with PCa. I also discussed the possibility with my Consultant at the Royal Marsden, who said he would arrange an appointment for me to see the widely acknowledged expert for HIFU in the UK. However, with my initial staging from T2A upgraded to T3A after MRI, it was agreed it would not be appropriate to further consider HIFU.* It is strange that as an assiduous follower of developments in PCa and a regular newspaper reader, I have not seen allegations that men have died because they had HIFU instead of conventional RT. I would be interested to be directed to any authoritative links/studies that show this. I do recall one American surgeon saying HIFU only blistered the tumour in one patient but how well was the HIFU done and was it appropriate in that case? It should also be noted that considerable advances have taken place in recent years in the way the procedure is done and in the actual equipment.
Using an unapproved procedure is of course another matter. There was a time when HIFU could be done generally, then it was subsequently only allowed for NHS patients within studies but allowed to be done privately.
* It is ironic that due to failed RT, I was referred in 2015 to the same expert at UCLH for salvage HIFU that I would have seen in 2007. This I believe was successful in what it set out to achieve. What was NOT done as I understand it, was to treat a different area of my Prostate where cancer was suspected. I am now pressing to have this other area treated with HIFU or Cryotherapy as appropriate because my PSA continues to rise and a PSMA scan failed to show any cancer outside my Prostate but some within it.
UCLH intended to palm me off with just HT under the aegis of an oncologist in Devon. I reverted to my consultant at the Marsden and pressed by me with the Marsden's support, UCLH have arranged (eventually), to give me another MRI. Following this I was told a MDT will look at the scan and decide if they will give me further focal treatment. If they decide not to treat, I will find somewhere privately that will.
I asked the Doctor I spoke with at UCLH why when a recent PSMA scan which I sent to them, showed cancer in my Prostate they needed a follow up MRI. I was told the MRI would show the cancer more accurately.....hmmmmm.
So, the battle continues ........
Just to confirm what I have always said which is I would not try to push a man towards any particular treatment. I am only seeking further salvage treatment applicable to my own circumstances which preclude further RT to the Prostate and surgery. HIFU as a primary treatment is less well proven than RT or Brachytherapy which can extend further, even if side effects are not so severe generally with HIFU.
Edited by member 03 Aug 2018 at 21:18
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