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Considering HIFU

User
Posted 26 Nov 2021 at 17:00
I wonder if you could have HT for a while to reduce the size of your melon and then have brachy? HT will make your plums shrink but not sure whether it would reduce the prostate enough.

Hold proton beam back for the future - it seems to have great results as a salvage treatment although not so great as a primary treatment. Definitely worth pursuing the focal treatments though, there may be research oncologists out there who would be very happy to take you on for cryo, proton or HIFU simply because you cannot have the traditional RP or RT and have nothing to lose.

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

User
Posted 26 Nov 2021 at 17:28

This is a great place for people to discuss all the options and take some feelings of control. Whilst waiting to have my Catheter out it was very sad that I had to sit to explain to an older Gent just what the Prostate was!  Made me wonder just how powerless he must have been feeling all through the various treatments.

User
Posted 26 Nov 2021 at 17:31

Lyn, 

When you speak of recurrence following primary treatment, do you mean new cancerous cells appearing, or discovery of some that had been left behind? 

User
Posted 26 Nov 2021 at 19:17

Hi Lyn, thanks for that. 

I have been on HT for about 18 months, attempting to get my PSA down, so I guess my melon should be as small as its going to get. ( Everything else has shrunk nicely!) At the start of the year it was about 100 cc, and my onco man was unsure it would have got small enough to fit with the standard parameters for brachy or HIFU.

Fresh MRI next week so we will see... 

User
Posted 26 Nov 2021 at 19:41

Originally Posted by: Online Community Member

This is a great place for people to discuss all the options and take some feelings of control. Whilst waiting to have my Catheter out it was very sad that I had to sit to explain to an older Gent just what the Prostate was!  Made me wonder just how powerless he must have been feeling all through the various treatments.

Stories like that make me very emotional - twice on here (in my time) we have had members so disempowered and alone that I have offered to travel to accompany them to their next appointment. 

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

User
Posted 26 Nov 2021 at 19:42
Fingers crossed for you olefogey
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Nov 2021 at 19:52

Originally Posted by: Online Community Member

Lyn, 

When you speak of recurrence following primary treatment, do you mean new cancerous cells appearing, or discovery of some that had been left behind? 

A recurrence could be either, Peter. With focal treatment such as HIFU or cryotherapy, they don't necessarily set out to treat all tumours in the prostate, just a couple of the most significant or visible. This means that an amount of healthy prostate is still there and prostate cancer cells can develop from new OR clusters of cancer cells that were not targeted during the treatment become a problem and have to be treated later.

I think that Barry has had a new tumour grow in previously healthy prostate material. 

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

User
Posted 27 Nov 2021 at 02:16
"I think that Barry has had a new tumour grow in previously healthy prostate material."

I would qualify this in my case by saying "..had a new tumour grow in a seemingly cancer free Prostate that had been previously treated with RT as a primary treatment." I say 'seemingly', because sometimes there can be some cells that are radio resistant and their DNA is not sufficiently damaged to be destroyed/stop reproduction.. These cells can be so small so as not to be seen on MRI but eventually concern raised by the way follow up PSA changed. So although my Prostate was ostensibly cancer free for 2+ years after RT, it might have been harbouring some cancer cells all the time.

With increasing PSA over 6 years post RT, a subsequent MRI indicated a small tumour which was confirmed by biopsy. This tumour was treated by HIFU in 2015 and initially PSA reduced a little but then started to rise again, very slowly but persistently. In fact, it only reduced slightly following a TP biopsy earlier this year. I think this was because part of the tumour was removed in one of the cores that was taken in the biopsy. In retrospect, I am doubtful that the HIFU completely eradicated the tumour. Calcification and the original RT may have made the HIFU more difficult. However, a further attempt with HIFU was approved in this spring but has been cancelled twice due to reasons too involved to go into here. I do not wish to have a Prostatectomy at this stage with as I was told would be permanent incontinence, so I believe further HIFU is my only realistic chance of direct rather than systemic treatment.

So to summarise, after RT, residual cancer in the Prostate is likely to be due to radio resistant cells that have survived but with Focal Therapy, it could be that the procedure failed to kill all the intended tumour, an insignificant tumour became significant or a completely new tumour grew in a previously unaffected part of the Prostate.

Barry
User
Posted 04 Dec 2021 at 20:34

Some 3 -4 weeks on - drugs all finished and so far no ill effects at all and getting onto normal activities including some short bike rides and turbo sessions. Saw surgeon and understand Op went as expected although will be some time before we know how effective it has been. Started providing 3 monthly PSA blood tests although I am told theses sometimes take a few to settle down. MRI is usually scheduled for first anniversary of HIFU. sO certainly no worse than before and may have to wait and see how trends develop to see positive evidence of results. Given that I can carry on with a normal life I can accept that.

User
Posted 04 Dec 2021 at 21:13

That’s great Chris. I said you would be on your bike in no time! Hope your PSAs follow my trend after the HIFU they start around 2 and after a year down below 1.

User
Posted 09 Dec 2021 at 15:58

Very early days but got first PSA results since HIFU. Told they can fluctuate at first so not getting too excited but level has gone to lowest ever at 0.33. Early Xmas present but at this level could easily be higher next time but for now couldn't ask for better.

 

Now if weather would relent can try a bit more on the bike! 

 

Hope everyone here can have a great festive season.

User
Posted 29 Dec 2021 at 14:46

Hi just seen your post

Perhaps read my treatment selection (IRE) as our condition is similar 

happy to chat 

paul 

 
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