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HIFU for those under 50

User
Posted 03 Jul 2024 at 15:42

I have recently been diagnosed with Prostate Cancer (3+4 T2a). I am 47 and considering my options and currently favour HIFU. I am interested to learn of any views on the use of HIFU as opposed to other treatments which I am not warming to. I am in the West Country and would welcome any recommendations for locations for HIFU where people have had good experiences or indeed bad ones that may enable me to avoid them. Thank you.

GerardR

User
Posted 03 Jul 2024 at 18:56
Hi Gerard,

Just a suggestion: I would recommend you get either a PSMA PET CT or a PSMA PET MRI just to be certain your cancer is - definitively - on just the one side. Many find the usual MRIs and even biopsies can be irregular in this regard. I myself was listed as T2a at diagnosis but after BOTH a PET PSMA CT and MRI scan as part of a clinical trial which itself was comparing the two technologies was found to have a small amount of the PCa housed in the transition zone on the right side. The original MRI and biopsy had simply reported the cancer lesion on the lower left peripheral side of the prostate. Thus after the PSMA PET MRI I became a T2c.

This would be important as it would best help you define whether HIFU was in fact the best route for your good self to take.

As I say, just a suggestion.

User
Posted 03 Jul 2024 at 20:51

Lizzo37, I still have a lot to learn about what is good and what is not so good. Thank you for your thoughtful contribution.

User
Posted 04 Jul 2024 at 08:53

Originally Posted by: Online Community Member
An option for you is to not do anything at this stage

Only if you were offered Active Surveillance as a choice by your consultant. That will depend on the position of the tumour(s), and the amount of Gleason 4 found.

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User
Posted 03 Jul 2024 at 18:56
Hi Gerard,

Just a suggestion: I would recommend you get either a PSMA PET CT or a PSMA PET MRI just to be certain your cancer is - definitively - on just the one side. Many find the usual MRIs and even biopsies can be irregular in this regard. I myself was listed as T2a at diagnosis but after BOTH a PET PSMA CT and MRI scan as part of a clinical trial which itself was comparing the two technologies was found to have a small amount of the PCa housed in the transition zone on the right side. The original MRI and biopsy had simply reported the cancer lesion on the lower left peripheral side of the prostate. Thus after the PSMA PET MRI I became a T2c.

This would be important as it would best help you define whether HIFU was in fact the best route for your good self to take.

As I say, just a suggestion.

User
Posted 03 Jul 2024 at 20:17

Hi Im sure you understand that HIFU doesnt have much data due to it being a relatively new treatment for prostate cancer 

In fact when my husband was dx with PCa in 2018 after a bit of research I thought HIFU was the way to go but he decided on surgery but then he was 70 yrs old  you are much younger at 47

An option for you is  to not do anything at this stage 

What I would reccommend is to give up cows milk and have soya milk instead - you may have read about the benefits of a vegan diet to fight prostate cancer  - the reason why is all to do with arachidonic acid which is in meat fish etc and how it promotes prostate cancer 

The antidote to arachidonic acid is asprin or ibuprofen both block the synthesis / damage  of arachidonic acid 

Whenever my husband has meat or fish he will have a small/ baby dose of asprin to block the arachidonic acid 

Soya milk is 50p a litre in Aldi and Tesco 

 

 

 

 

 

 

 

User
Posted 03 Jul 2024 at 20:50

Thank you very much. I will enquire about those.

 

User
Posted 03 Jul 2024 at 20:51

Lizzo37, I still have a lot to learn about what is good and what is not so good. Thank you for your thoughtful contribution.

User
Posted 04 Jul 2024 at 02:14
Hi Gerard,

If you are seriously considering HIFU, preferring it to other possible options, you need to go to a place where there is a specialist for it to ascertain whether you are a suitable patient. They will do a high quality scan and you will not be eligible if any cancer is observed to be outside the Prostate, in a part that cannot be reached or there is too much cancer for this type of treatment or too widely distrubuted. Before the HIFU you will also have to pass varios other pre op tests. To get pretty comperable results with surgery or radiation treatment you may well need the HIFU to be repeated as was the case with me. I had it for failed RT, the last HIFU being done in Dec 2021. (My PSA when recently tested was 0.04, nothing untoward was seen in my last MRI and I was told that I am in remission).

I had my HIFU within a trial at UCLH in London and I beleve they now do the procedure outside a trial on the NHS. They have the most experience of the procedure in the UK and instruct others.how to perform it. They also specialize in Cryotherapy and Nanoknife, the latter being a name for Irreversable Electroporation, being other forms of Focal Therapy. I believe there are centres that do HIFU in Bristol, Southampton, Guildford and a few other places with more looking to adopt the procedure.but not difficult to get a train to Paddington and bus or taxi to UCLH and go to the most experienced.

Lizzo is right that there is not much long term data on HIFU compared with Surgery or Radiation but clinical trials started in France in 1993 using the French Ablatherm for Prostate Cancer and it was awarded the CE mark of approval in 1999 so medium term results are known. Of course techniques have improved over time as has the equipment and one area of great benefit has been the precision afforded in recent years by the higher quality scans available. HIFU generally enables a very fast recovery with minimal side effects but if it is not able to eradicate the cancer a Prostatectomy can follow or radiation be given. However, it can made these follow up treatments more diddicult if necesssary. You have to bear in mind that all forms of treatment have their share of failurers and potential side effects.

There is debate about how effective changing diet can be on slowing down the progress of PCa and there have been posts about this on the forum. Unfortunately, once diagnosed, a changed diet is not going to cure PCa.

Barry
User
Posted 04 Jul 2024 at 08:53

Originally Posted by: Online Community Member
An option for you is to not do anything at this stage

Only if you were offered Active Surveillance as a choice by your consultant. That will depend on the position of the tumour(s), and the amount of Gleason 4 found.

 
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