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HIFU or Full Prostectomy?

User
Posted 10 Nov 2020 at 08:34

I'm just about to turn 63 and for the lasts 5 years have been under AS, the start was a PSA test and result of 4.5, it now hovers around 6.5 to 7 ish.    Over the years I have had two Mri's and 3 Transrectal biospy's and the final one has shown that the tunmour has gone from 16cm to 24, and I have gone from grade 6 to 7 and need to make a choice over treatment.   I have been offered full removal or they are happy to refer me to a oncologist for Radiotherapy.


When I mentioned HIFU it was almost dismissed and seen as a treatment that would only hold things back.  Its clearly new in the medical world and I fully understand not enough data but it does seem a good option that I would like to consider, if in lets say 5 years it has not worked then surely I can go for convential treatment.


My consultants advice was that I was fit and healthy with no other health issues and the Robotic procedure would give good results.   My head is spinning and the thought of the surgery and the side effects doesn't sit well.   HIFU seems to have very little side effects.


Anyone here had any experience of the HIFU treatment of know where to start to find the best people.


 


Many thanks

Edited by member 11 Nov 2020 at 08:42  | Reason: Not specified

User
Posted 10 Nov 2020 at 13:51
People who have had HIFU will be able to message you privately about where they had it.

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.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Nov 2020 at 18:36
Cancer is as much a mental battle as a physical one. How do you feel about having a delaying treatment knowing that further treatment will, more likely than not, be required in the future? Some men are OK with that; others want to get it over and done with and get on with their lives. That's basically the decision that faces you: minor treatment now and know you're likely to need radical treatment in the future, or radical treatment now and get it over with?

I'm definitely in the "get it over with" camp myself, but I'm not you.

Hope it all goes well whichever choice you make.

Best wishes,

Chris
User
Posted 10 Nov 2020 at 20:27
Your tumour has gone from 16cm to 24? That would qualify for the Guinness Book of Records!! Did you mean mm?

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.
Barry
User
Posted 10 Nov 2020 at 22:49

Hi 


Are you Gleason 3+4 or 4+3 then ?


I assume unifocal , and not T2c.


Regards Gordon

User
Posted 11 Nov 2020 at 08:45

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

User
Posted 11 Nov 2020 at 08:53

Many thanks Chris for responding I really appreciate it.    I was asked the question on first diagnosis if the fact they had told me I had cancer me and to be honest it didn't as at that point I was also pretty much reassured it was non agressive and agreeing to AS was an ok to journey to start on.    Looking back I maybe should have done some research and looked at the likes of  HIFU then when everything was just start (hindsight as they say is a wonderful thing)


I agree with you in that getting it all out now then thats it all sorted.  My mother at 58 had a full mastectomy with everything removed and she lived until she was 97 but of course that was 40 year ago and things have advanced.


At this point I'm not even sure 100% I'm suitable for HIFU but I'm going to agree to having my medical records released to a clinic and take it from there.


 


thanks again and all the very best to yourself


 

User
Posted 11 Nov 2020 at 09:01

Thanks Gordon for responding but I'm a 100% on some of the terminology you have used T2C?


Unifocal , cancer has been confirmed  that it is only inside the prostrate and I have been told that I have moved from a grade 6 5 years ago to now grade 7 so I'm afraid I do not know if I'm 4+3 or 3+4?


 


thanks

User
Posted 11 Nov 2020 at 09:03

thanks Barry, yes mm not cm's, unless of course that is the reason my middle section is gaining weight and nothing todo with the fact that I need a biscuit or peice of cake with a tea of Coffee ☺️


 


I have had a look through previous conversations and found some useful information


 


take care


Ken

User
Posted 11 Nov 2020 at 11:44

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

User
Posted 11 Nov 2020 at 11:59

thanks Barry, yes mm not cm's, unless of course that is the reason my middle section is gaining weight and nothing todo with the fact that I need a biscuit or peice of cake with a tea of Coffee ☺️


 


I have had a look through previous conversations and found some useful information


 


take care


Ken

User
Posted 11 Nov 2020 at 12:10

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

User
Posted 11 Nov 2020 at 12:26

Hi Ken


https://www.sciencedirect.com/science/article/abs/pii/S1078143918301601


Although you are similar age and possibly same Gleason etc.  You are vastly different from my DX.


Ie  your tumour may be single and at 1" .. old money..   must be a high % volume of your prostate.


Again doesn't equate to any less or more risk than mine, as mine was very low volume however multiple focal.


At that size ablation options  may not longer be an option on the table, you can ask.    


Regards Gordon


 


 


 


 

User
Posted 11 Nov 2020 at 18:49
Hi 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.
Barry
User
Posted 11 Nov 2020 at 20:54

Hi Audiman,


We all have different opinions and tolerance of risk.   There are people who seek alternative solutions and there are people like me who just want it cutting out immediately.


When I had skin cancer (non-melanoma) there were alternatives to surgery but the dermatologist said it will almost certainly come back and advised me to have it cut out for a permanent solution.


HIFU seems to be similar.   Next time it deteriorates you can't be sure you'll be offered surgery or radiotherapy.  It might be incurable.


That it's grown 8mm is a warning sign.  The volume of a 24mm diameter sphere is 3 times that of a 16mm sphere.  It might not be a sphere though.


It often seems the fittest people have no symptoms and some find themselves going too late and not being offered an operation or radiotherapy.


If I was you I'd make a choice and get it done.   For me it was the op as it's over in 2 hours and with luck there is no more treatment.   With prostate cancer though you're never free of the thought it might come back especially with the frequent post treatment blood tests.


The above might sound a bit doom ridden but Prostate Cancer operations and radiotherapy have good results.


Good luck,
Peter

User
Posted 12 Nov 2020 at 12:41

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

User
Posted 13 Nov 2020 at 12:22

Hi Audiman


On the subject of primary HIFU, you may have seen my posts in September when I had it done by UCLH on the NHS.


All cases are different not least because my decision also took into account that I am 76. Less years left than you and therefore other intrusive treatments may intrude into my remaining life unnecessarily. That’s not to say it won’t do the job or that I would not be able to go for another HIFU or HT/RT later if required.


The private sector may make HIFU look more glossy than the NHS at UCLH! 


Bill


 


 

User
Posted 14 Nov 2020 at 15:39

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


 

User
Posted 14 Nov 2020 at 19:03

Originally Posted by: Online Community Member


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)"



Adenocarcinoma is the most common type of prostate cancer. So it's not a rare, nasty one.


Grade group 2 is intermediate risk encompassing Gleason 6 and 7 (3 + 4).
If you were Gleason 7 (4 + 3) you would be grade group 3 and higher risk (and this would mean you had more type 4 than type 3).


(3 + 4) means mostly type 3 (fairly benign) with a bit of 4 (more aggressive).


5% overall tissue involvement means 5% of the cells in the samples were cancerous.


Pattern 4 component greater than 10% means that >10% of the cancer cells are the more aggressive type 4s (as in 3 + 4).

The best news there is that it's T2 - organ confined - means not spread outside the prostate so very treatable.


And N0 means no lymph node involvement

Edited by member 14 Nov 2020 at 19:10  | Reason: Not specified

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 14 Nov 2020 at 21:04

Alex thank you so much that helps a lot


 


Kindest regards


Ken

User
Posted 17 Nov 2020 at 01:38

Just to say hi as my husband has chosen to go down the focal treatment path since his diagnosis with a large Gleason 6 tumour at the end of 2016.  He has a complete choice from AS to the radicals of RP or RT. 


He chose focal due to a low risk diagnosis but with at 53 he wished to avoid side effects particularly incontinence and ED and to have minimal impact on his career.


He has now had 3 focal treatments ( 1 focal laser ablation in the USA  early 2017 followed by a  focal HIFU early 2020 in London ( reoccurrence now graded G7 (3+4) which need a repeat this Autumn. I have a thread for the full back story


So not a straightforward journey at all but a QOL choice and of course monitoring has to be ongoing but then it does for all is my understanding.


 


Good Luck


Clare


 

User
Posted 01 Dec 2020 at 08:44

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 🤞

User
Posted 01 Dec 2020 at 11:09

All the best with it, I initially made contact with a private clinic in London and nearly one month on I am no further foward after a phone call from them where I gave them all of my details, then I sent another email to chase which was read and nothing has come back. so I'm not going to mention the clinic but if they cannot get it right at the start then I have no faith in them


Today I have an appointment with an oncologist to discuss that route so I have many questions for him and I hope at the end of it I'm clear in my head which route to take


all the very best to you its not easy whatever route you take but I know I am one of the lucky ones in that it has been caught early

Edited by member 01 Dec 2020 at 11:32  | Reason: Not specified

User
Posted 01 Dec 2020 at 15:32

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

User
Posted 02 Dec 2020 at 07:03
Many thanks Simon, I had what I felt was a good meeting with an oncologist who I spent at least 45 mins with and he went through and explained everything with various options available. He has suggested the best course of action based on my case would be stereotactic Radiotheraby and he is also going to cost Probeam Radiation which I have been reading about but I know its not available on the NHS.
I felt a lot at ease after speaking to him and I have never had anything but praise for all of the staff at the hospital as from the very begining I have always been seen very quickly etc.
The problem they have at the hospital though is there is a delay in having the procedure for a rectal spacer to protect the bowel as he said they have a back log and are only allowed to do two per week??. My case is not ultra urgent so its not such a big deal but now that I know action needs taking I just want everything sorted and get it all over with.
I totally agree with you about having a few opinions and if you have the time then take it and get as much advice as possible, I consider that I am one of the very lucky ones here that this has all been caught at a very early stage.
 
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