Still Jumping hoops to get HIFU Treatmentt

I don't believe any NHS MDT (Multi-disciplinary Team) would offer HIFU as a primary treatment if there might be mets. You really need that investigated first. There's no point having HIFU unless it's being done with a curative intent.

One common (but not universal) issue with private treatment is that it sometimes doesn't include any MDT, so you don't have urologists, oncologists, radiologists, focal therapy specialist, etc all together in a meeting, discussing what's best for you.

I did do my research on HIFU speaking to a Oncologist at London College Hospital who had personally had the Treatment. I also looked at best Urologists in UK as voted by other Urologists and the Consultant I chose was at Birmingham Cancer Clinic inThe Spire Hospital who was in the top ten and one of the most experienced doing HIFU.

My daughter, a Doctor in France, sought out info on Prostrate Cancer Treatment in Europe as did relatives in USA plus my GP was of the opinion only lack of Funds has stopped NHS Scotland providing this treatment which in recent years has improved greatly since its early days with better Training for Consultants.

The Consultant I chose discussed my NHS PSA blood test results/MRI Scan at the weekly MDT and it was decided that HIFU Treatment couldn't take place until there was certainty that my cancer was contained within the Prostrate.

The PSMA PET Scan did confirm Cancer was only in one area of Prostrate and it was contained. Consultant mentioned PSMA 'hotspot' but didn't elaborate merely saying something about "PSMA membrane ..... insignificant at this point, Treatment if PSA levels increase'.

Since learning of this I've been doing my own research and it appears it's not uncommon for such a 'hotspot' to show up. Some Consultants take a 'wait and see if PSA increases' view, whilst others do Rads on 'hotspot' at an early stage. I just keep thinking if I'd stuck with NHS this ' hotspot ' would have gone unnoticed since my NHS Consultant refused to refer for a PSA PET Scan. I have now arranged appt with my GP to discuss next way forward and request a change of NHS Consultant Urologist Oncologist and go down the NHS route in respect of this hotspot.

I do appreciate others views particularly anyone who has experienced being diagnosed with a 'hotspot'.

Scott P.

I would also query whether Focal Therapy is used anywhere near as much in the USA (where Cryotherapy is the most used form of Focal Therapy) than Prostatectomy or Radiation.. In mainland Europe there would be more men receiving Focal Therapy than in the UK, particularly with France using the French Ablatherm for HIFU but still far less used than Prostatectomy or Radiation of various types. Having said that, appropriate Focal Therapy for suitable men is becoming used more frequently in the UK and this trend is expected to continue. It is not only important that this 'hot spot' is more widely understood but also that cancer within the Prostate can be dealt with by the contemplated HIFU, although it can be treated by further HIFU, Salvage Prostatectomy or Radiation if too big a job for initial Focal Therapy. The final decision is for the patient but a major consideration is what experts in their field feel they can achieve.

If I had this diagnosis, my thinking would be along the following lines...

The chances of a single met is quite small. Most likely, it's either not a met, or there will be more micro-mets (mets too small to show up on scans). So it's very important to get it investigated first as far as possible. A second opinion on the PET scan might be useful, as might some other form of more detailed imaging of the location (such as CT or MRI).

If it's no longer thought to be a met, then a focal therapy could be considered if the known cancer in the prostate is within the parameters for a focal therapy.

If it is thought to be a met, you are a high risk patient as it's already spread. Micro-mets in and around the prostate are a significant risk (which is where it would most likely spread first). I would be looking to do radiotherapy of the prostate, seminal vesicles, and pelvic lymph nodes, to take out the 'mother ship' of the cancer as you put it, and any micro-mets spread to the most likely locations. This would also come with hormone therapy. That is likely to be available on the NHS, as it's a fairly common treatment for high risk patients. Then I would be looking for SBRT (focused/stereotactic radiotherapy) on the known met. This doesn't have a high cure rate, but even when it doesn't cure, it's beneficial in putting off further treatments. This is unlikely to be available on the NHS - it's only available on the NHS if the met isn't discovered until after the initial radical treatment has been performed. (Yes, I know this restriction doesn't make much sense). However, you could probably pay for this privately, or if you are being treated at a main cancer centre which also does research in these areas, you might be able to persuade them to give this a go on the NHS on the basis that the standard NHS imaging done before this procedure would not have found it.

You really need to talk this all through with a competent oncologist with a wide range of experiences.

I don't think you did understand everything you were being told - sorry if that caused you a panic but:

- it is a prostate not a prostrate

- prostate cancer can be contained and also metastatic

- you asked whether anyone else here had had a hotspot. I replied saying yes, lots of men on here have had hotspots and in almost all cases this is a euphemism for mets. Perhaps what you meant to ask was 'is there anyone here who had a PSMA hotspot that turned out not to be cancer?'

This group is moderated to the extent of enforcing the rules, particularly no naming clinicians, no spam, etc, but not at a clinical level. What does make this group good is that although it's peer-to-peer support, there are enough members in this forum with a very good knowledge of prostate cancer, most treatments, current trials, etc. that the information given is to a very high standard, and anything incorrect is quickly corrected.

There's a large UK facebook support group too (not as many members as here). However, it doesn't have as many expert patients. Not having subject headers for threads (something facebook has talked about but never implemented), not having easy access to find relevant older threads, and not having the individual profile/bio does make facebook less suitable, and the effect is lots more threads talking about the same issues again and again, which gives the appearance of being more active, although less efficiently so because useful information posted a while back becomes lost.