HIFU or Full Prostectomy?

I think that you seem to have a good grasp of the issues with HIFU ... it isn't very successful as a primary treatment but it can delay the point where more radical treatment is needed. It is very difficult to get hIFU on the NHS but if you can afford to pay privately (or have medical insurance) and are not freaked out by the idea that you may need to have it repeated and / or have more intrusive treatment in the future, then I would say go for it!

The other option to consider is brachytherapy, you should ask for a referral to oncologist to discuss options anyway and can ask whether you are suitable.

There have been several threads on HIFU recently, some with links and I think you might well find these helpful. Just set the 'Conversations' to go back a couple of weeks is probably your easiest way of getting to them as the 'Search' facility on this forum is not great.

Many thanks for responding, I've requested an appointment with and anocologist to discuss and further and ask about brachytherapy as this is also something that has not been offered.

In terms  of HIFU I'm going to permission for a private clinic to view all of my scans and results and lets see if I'm even suitable .

Kind Regard

Hi Ken,

Ok. A lot of information on this site.

https://prostatecanceruk.org/prostate-information/just-diagnosed/what-do-my-test-results-mean

Over the years has anyone , consultant ? Shown, a basic diagram and fully explained where tumour or tumours are most likely located.

.  In my case as I only have 1 biopsy and MRI and knew zero about Gleason and staging. I remember asking the consultant could he draw where the tumour was situated and how large, expecting he would draw a small circle.  Instead he picked up his biro and peppered the image with numerous dots, I assume randomly.    I didn't join this forum until about 1 year after my surgery.

Do as you are doing, gain knowledge, question everything.

See my profile. My brother had PIRAD info and had RT incidentally. I never was told about PIRAD or Likert, never asked.  Mine back in 2015 would have been a MRI guided TRUS.

See https://prostatecanceruk.org/prostate-information/prostate-tests/mri-scan

  if you haven't seen this.

Regards Gordon

Edited by member 11 Nov 2020 at 11:54  | Reason: Not specified

Very helpful and appreciated.    I have never seen a diagram of where the cancer is sitting apart from being told its contained within.  The word Pirad has just cropped up in that it was noted in a letter to my GP  "Pirad 3/4 lesion within the prostate"

Over the years I have had 1 10 sample Biospy Transrectal then a further 2 with 20 samples each.    The lesion has grown from 16mm to 24mm over the 5 years.   Like many guys I have no sypmtons at all that anything might be wrong.     The sort of pepper effect you refer to is a reason that my urologist prefers full removal as he said there is a high chance of other cells that are so small they are not being picked up .

Like you have said I am searching as much as possible and building further questions to ask the consultand.   I have the praise the people who I'm seeing as from the word go I have had nothing but excellent treatmend and never waited more than two weeks for an appointment etc

Take care and kind regards

Ken

Sometimes cancer cells proliferate in different ways and indeed there are different types of Prostate Cancer (PCa). Some are not considered significant and in such cases normal HIFU may not be directed at these but only where a small tumour or small number of tumours is/are considered significant. This means the Prostate can maintain more function. But cancer cells apart from congregating, can develop in a way that they do not form a solid tumour and be dispersed whether within the Prostate or further afield, so finely that they can't be seen on even a good MRI scan. (The consultant illustrated this with his pepperpot example). Where the cancer cells are more concentrated they are easier to direct HIFU to. The consultants also have to take into account additionally, the grade of the cancer, the volume and position. Perhaps, this is partly the reason why HIFU is not recommended for all men and why subsequent changes can require further HIFU or even more radical treatment. Of course surgery can remove all the cancer cells within the Prostate but there is a limit to how far the surgeon can cut and even then there is a small risk that in the process some cancer cells may escape. Sometimes a surgeon can have a good idea of the extent of the cancer whilst removing the seen cancer, by sending samples to a lab in the course of operating and better examination of the Prostate in the lab after removal. Unfortunately, nothing is certain with PCa. Cancer cells that have remained dormant for a very long time can become active again and respond differently to treatment. It can be many years before a man can consider himself cured and so the term 'In remission is used'. We know that most men that have PCa whether diagnosed with it or not go on to die of something else. Sadly, for a minority of men this is a killer disease and they are fighting a retreating battle and as with any forum, this one it is used disproportionately by those most severely affected.

Many thanks Peter and I do not find it doom and gloom at all but just a very realistic response.    The lenght of time required for radiotherapy is putting me off plus the HT so I'm learning more towards full removal for all of the reason you have said.    For sure I don't wish to delay and in my mind I want this all sorted before Christmas

thanks

Today I received a copy of a letter that has gone to my GP from my Urolgist.   in it there was clearly some technical terms which I'm unsure about..   anyone here explain any of this:-

"having been on a program of active surveillance lor low-risk prostate cancer, the most recent set of prostate biospies showed grade group2 adencocarcinoma with 5% overall tissue involvement and 50% maximum individual core involvement.   The pattern 4 component is greater than 10%.  The discease remains organ confined (clinical stage 2 T2 NO)"

who has the laymans version ;-)

thanks

Alex thank you so much that helps a lot

Kindest regards

Ken

Hi looks like you are in the same position as my husband, diagnosed nearly two weeks ago and decided to go for HIFU, hope we have made the right choice 🤞

Hi Audiman

Hope today goes ok

Clinics can be a bit hit and miss. When I found the Prof Whocannotbenamedhere I found things very refreshing as they embrace automation plus his support staff and colleagues made the whole process very simple once I decided surgery was the route. My only regret was waiting so long to get a follow up PSA (July 2019) after being given the all clear by my local team (February 2018). Local team said to get my PSA done every 6 months but leaving it 18months may not have been prudent as I went from PiRADS2 -> PiRADS4. 

Also UCLH team are definitely worth talking to as have latest gear and leading edge skills plus they have a private facility next door I think. In my view its worth spending a few hundred quite to get a couple of different views.

Best of luck and keep us posted!

Simon