HIFU Focal Therapy

User

Posted 19 Oct 2020 at 16:19

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 on the web. I sent a message to them on Saturday and I had a 30min call today describing the treatment, so, a very prompt response. 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, others seem peripheral.

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, espePostcially from anyone who has undergone HIFU Focal Therapy.

Thank you.

User

Posted 27 Oct 2020 at 18:26

Thanks Bill. I work with my son, I keep fit normally & run half marathons. I think I'm willing to take a chance on HIFU, despite the longer term risks. The surgeon I spoke to said that the technology had come on a lot since the early days, and many of the HIFU reviews are dated. Perhaps recent operations will be more successful.

I wish you and your brother all the best.

kind regards

Kenny

User

Posted 10 Nov 2020 at 09:29

Originally Posted by: Online Community Member

We realised too late that the NHS in our area would not support J because he had the op privately so he had no access to a clinical nurse specialist, district nursing, etc., and we had to fight hard for referral to the NHS ED nurse.

NHS is no longer allowed to do this, although it used to be NHS policy - if you'd had any private procedure for an illness, you couldn't go back into the NHS for further treatment. This backfired enormously - lots of people who would normally have had private treatment no longer did, because they'd lose NHS access, and together with the resulting increased load on the NHS, the NHS lost loads of income from its private wards which are run at a profit to pay for other NHS services.

This resulted in a U-turn about 10 years ago, where the NHS is now required to work with private providers, share test results, etc, and patients are allowed to select parts of their diagnosis and treatments to be handled privately while remaining under the care of the NHS. There are detailed rules for clinicians working in the NHS - they are never permitted to mention private procedures to you, unless you have first said that you want to know about them, in which case NHS clinicians are allowed to say what private procedures you might benefit from (although they might not necessarily have expertise to identify all relevant private procedures). This has resulted in many patients returning to private care, reducing load on the NHS and the NHS being able to again make a profit to fund other activities from offering private procedures itself.

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User

Posted 19 Oct 2020 at 20:49

Hi Benny

Sorry to hear about your diagnosis. I considered focal therapy with the legendary Prof E and the team at UCLH at they seemed to be the centre of excellence here in the UK. But that was taken off the table for me even though I had gleason 6(3+3) localised early stage too. In my case following biopsy all four quadrants of the prostate were found to contact small tumours and one near the capsule. Have a look at my Retzius Sparing RARP + Neurosafe for the journey.

I suspect many here will be able to offer more specific guidance having come out the other side of HIFU successfully.

Cheers

Simon

User

Posted 19 Oct 2020 at 21:34

HIFU is a good salvage option but does not have a great track record as a primary treatment. If you are happy with a treatment that will deal with the problem short term but is less likely to get you to full remission, and you are confident that you would be able (or your insurer would be wiling) to pay for repeat treatments if necessary, I would say go for it.

Just as a note, HIFU isn't a place or organisation so when you say "HIFU states ..." what you mean is 'the provider I have spoken to who happens to offer HIFU states ..." As a provider of HIFU, they are likely to tell you how great it is while downplaying the alternatives!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 19 Oct 2020 at 22:17

Hi Benny,

There are pros and cons for all kinds of treatment and HIFU is no different in this respect. It is one of several treatments that come under the heading of Focal Therapy. It is a niche treatment mostly given in the UK as a salvage treatment for failed RT, although we have the partner on this forum whose husband had it (twice), as a treatment for another failed Focal Therapy FLA (Focal Laser Ablation) administered in the USA. A relatively small number of men in the UK have HIFU as a primary treatment if they meet the criteria. Cryotherapy is an even less used form of Focal Therapy administered in the UK. there is a more recent development of HIFU like treatment called TULSA-PRO which may prove better but it's early days, see http://www.profoundmedical.com/wp-content/uploads/2015/05/Phase1ResultsPresentationFUS_London2015_pdf.pdf-

Although you are considering HIFU as a Primary treatment, you may be interested in the HIFU I had for failed RT as here https://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience#post133611

I don't think that as a stand alone treatment HIFU is quite as effective as Surgery or Radiotherapy and long term outcomes including side effects are not yet so well known but the procedure is repeatable (providing the tumour is in a place within the Prostate on which the Ultrasound can focus) and where necessary HIFU can be followed either by Prostatectomy or Radiotherapy.

I recommend you download or obtain a copy of the 'Toolkit' from the Publications Dept of this forum https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

Edited by member 19 Oct 2020 at 22:29 | Reason: Not specified

Barry

User

Posted 21 Oct 2020 at 11:35

Hi Benny

It’s a difficult time deciding on options and waiting for treatment in these Covid times I know I have just had primary HIFU at UCLH.

All the advice you’re had here is good and I will not repeat.
But I can give you a actual example of the difference in side effects etc. of HIFU verses HT (hormone)& RT (radio) as my brother was also diagnosed 12 months ago also Gleason 3+4. He went for HT & RT, where as after researching it I went for a HIFU operation.

I can say that one month on I have almost forgotten it
I have virtually no after effects. I am on my bike again. No wee /bowel problems.
Whereas my brother wishes he had gone my route . He struggled with the hot flushes etc of HT but his worst problems came with the bowel problems of RT.

My op was one day and a week with a catheter, he had months of treatment and months of discomfort.

UCLH do not expect me to have to return for another HIFU but it is possible as you know. And if all else fails I can still have HT/Rt but for me it is worth the risk. The main risk of course is not following up with check ups as at all costs to not let it get to your bones. (When the pain then is the same whether your old or young).

Bill

User

Posted 25 Oct 2020 at 00:41

Hi Benny

My husband had chosen a focal route in an attempt to avoid side effects of a radical treatment after his diagnosis in December 2016 with a large G6 ( 3 +3 ) tumour. It has not been a straightforward journey with the original focal treatment being a focal laser ablation in the USA in 2017 as HIFU was offered but on a whole or half gland basis back then

All well until early 2020 when a reoccurrence was assessed as G3+4. His second treatment as a focal HIFU in London in February this year. Unfortunately again a reoccurrence occurred and he had his third focal treatment (a second focal HIFU) in September. His last scan post this treatment was clear so we are hoping it’s done.

He has avoided the side effects as he wanted so despite 3 biopsy’s and 3 focal treatments he has had no incontinence and has recovered erectile function of completely after a period of rehab needing tablets. He is once again back to full natural erections, though using tablets is no longer the big deal to him it was back in 2017, he doesn’t need them anymore. He is 57. I will bounce my thread if you want to read about his double focal HIFU journey.

Good luck

Claret

User

Posted 25 Oct 2020 at 17:00

Benny,

HIFU should probably be thought of as a delaying tactic rather than a curative treatment. Certainly it has many fewer side-effects than surgery or RT, but those are treatments which have good track records as curative fixes for prostate cancer, which HIFU does not.

Of course with a G6 diagnosis a delaying tactic might well be all that's required; "pure" G6 prostate cancer is vanishingly unlikely to kill you. The problem is, of course, that the biopsy is likely to have missed more aggressive cancer cells. HIFU plus regular PSA tests might well work for you, though, as long as you're aware that it may well need to be repeated or a more aggressive treatment option considered in the future.

Best wishes,

Chris

User

Posted 25 Oct 2020 at 18:28

"The problem is, of course, that the biopsy is likely to have missed more aggressive cancer cells."

That's not strictly true; the biopsy may have missed more aggressive cells but it may not have done.

Edited by member 25 Oct 2020 at 18:28 | Reason: Italics

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Oct 2020 at 20:28

The number of men here who've had their Gleason score upgraded after the pathology examination following RP does rather suggest that it's quite a high probability event for a biopsy to miss things, so I think it's prudent to be cautious about a G6 result being all that's there.

Cheers,

Chris

User

Posted 26 Oct 2020 at 20:51

That may be true based on reading here Chris, but we know that the stories here may not be truly representative. Those who have successful primary treatment with no complications or recurrence tend to drop out quietly, those who successfully remain on AS for many years without any sign of progression also drop out quietly, and those whose G was the same or lower on pathology are not so memorable as those who turned out to have rather more significant disease than expected. As a control group, we are a rather biased lot!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Oct 2020 at 18:05

Hi, to everyone who has replied and offered such great insights. I apologise for not answering sooner, I hadn't realised that you had responded.

I had a call on Saturday from my prospective surgeon (Doctors name edited by moderator) (I can't put a link on here but you could Google him, he gets good reviews). He has completed about 150 HIFU operations he says, in London. The call lasted about 30mins and I had a big list of questions ready. I can provide these if you're interested.

I was very impressed with (Doctors name edited by moderator) and did not feel like it was the sales pitch, more a professional assessment. He initially asked a few questions. I've been swinging to and fro on what to do, however I have reached a conclusion and that is HIFU, if I qualify (he said it was likely but he will confirm soon). The comments above endorse the fact that there may be more sinister outcomes, I'm yet to discover.

The upshot is that he did not have my MRI results to-hand, is expecting these from my hospital this week, is discussing my case tomorrow with his colleagues after which he'll get back to me. I mentioned that it was difficult to get stats on longer term survivors, and also wanted to know whether the technology had improved over the years, which he confirmed was the case. The stats are impressive, but ultimately it depends on luck. Don't we know it.

I am leaning towards HIFU as it is the least invasive, and the side effects seem much reduced. This is important as I have a small business with my son and do not wish to be off work for long. I am 66 but keep fit and extremely keen to keep it going. Later on, should there be a repeat (or a new cancer) I can still fall back on HIFU if localised, and subsequently, other treatments. Also, I have confidence in the surgeon and this I think was pivotal in my decision to-date.

I understand that each individual case is different, with many varied views on treatments. The nurses from the various sites stress that you should listen to your doctors and would not make any recommendation on the types of treatments available, which of course is understandable.

I am continuing to go through the motions and will still see the NHS urologist tomorrow, and the oncologist on Monday (fortunately I have private health cover through my business and understand that HIFU is available to me). I don't want to have reached a pre-conceived conclusion, and will be asking the specialists why I should adopt their treatments rather than HIFU.

I have gathered a great deal of information on the subject, including very helpful comments on this site and others. The experience of Saturday's conversation and review of the surgeon thereafter has only served to confirm my thoughts that HIFU, if possible, is the way forward for me. I'm keen to get something done now, asap, but I suppose that's natural.

Then again, by this time next week I may have changed my mind, albeit I don't think so.

I wish everyone all the best, and thank you again for taking the time to respond, it's greatly appreciated and valuable to me.

I will update you as I progress.

Kind regards

Kenny

Edited by moderator 27 Oct 2020 at 19:28 | Reason: Doctors name mentioned

User

Posted 27 Oct 2020 at 18:26

I wish you and your brother all the best.

kind regards

Kenny

User

Posted 27 Oct 2020 at 18:31

Hi Chris, thank you for your reply. Yes I am concerned that only 12 biopsies were taken. I hope I'm lucky, stay lucky!

Putting on a brave face to my immediate family, have not told friends, playing it down somewhat - especially to my 3 children - but the truth is I'm a bit stressed & have a knot in my stomach.

Thanks for your help & best wishes.

Kenny

User

Posted 27 Oct 2020 at 19:21

Hi Kenny,

I read your post with interest but mention that it is a forum rule that you should not mention the name of your consultant, so you may find moderators delete any such reference. I think you and other would benefit from the thoughts of the man widely regarded as the top HIFU specialist in the UK , also his comparing with other forms of treatment etc. I don't understand the wide margins between various aspects so you have to scroll so much, https://www.canceractive.com/article/professor-mark-emberton-on-high-intensity-focussed-ultrasound-or-hifu

Edited by member 27 Oct 2020 at 19:24 | Reason: to highlight link

Barry

User

Posted 28 Oct 2020 at 09:00

Thanks Simon. I'm sorry to hear that your diagnosis was more severe than originally thought, but I hope you're doing well now. Thanks for giving me the heads up that it may not be plain sailing. I dare say I'll find out soon.

Best wishes,

Kenny

User

Posted 28 Oct 2020 at 09:02

Thanks Chris, I'll find out soon. Thanks for the heads up.

cheers

Kenny

User

Posted 28 Oct 2020 at 09:05

Thanks, that's very positive and the way I am approaching this illness. I count myself lucky to have discovered PC relatively quickly, and due to a chance comment to my doctor. Best wishes, Kenny

User

Posted 28 Oct 2020 at 09:11

Hi Claret

Thank you for sharing your and your husband's experience with multiple HIFU courses. I wish you both well.

I am still going through the motions and don't know for sure whether HIFU is a possibility, it looks like it is and I hope so, as my mind is made up. I am however meeting the urologist professor this afternoon and will listen to what he has to say.

Kind regards,

Kenny

User

Posted 31 Oct 2020 at 07:24

Well I had the standard RT at Addenbrooks, with no real problems.

User

Posted 31 Oct 2020 at 08:06

Well that's good Bob but it was only after two years of having RT and then a gradually increasing PSA that it became clear that I would need further treatment. I hope yours works for longer but I don't think this is going to help Kenny finalize his decision.

Barry

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