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PSA post HIFU

User
Posted 09 Oct 2016 at 14:50

Hi, First time on the forum. I had HIFU in July 2015 and post op my PSA reduced to 1.8 (was 16 prior to treatment). PSA tests at every 3 months since then has seen it rise 2.60, 2.79, 2.93 and recently 3.40. I wondered if any others on the forum have had this treatment and if so what was their PSA post op? My surgeon says the PSA will fluctuate but mine is rising slowly. I would have thought that it would be lower than this. Any feedback would be appreciated. Thanks Alan.

User
Posted 09 Oct 2016 at 23:21

Hi Alan, there are very few on here that have had HIFU and those that have had it are more likely to have had it as a salvage option after their initial treatment failed so their pSA results will not help you as they don't have a prostate.

The fact that your PSA is steadily climbing seems worrying, especially as it is now at the upper end of the normal range. You can only be guided by your specialist though - if you had HIFU as part of a clinical trial, perhaps it is worth a conversation with the trial nurse to understand how other men's PSA has behaved post-treatment?

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

User
Posted 10 Oct 2016 at 09:33

Hi Lyn, Thanks for your reply, the only one so far! I will go back to my nurse but I'm not too sure how many people have had HIFU within the trial and no data has been released yet. As you say it is now at the upper level of normal range that is of concern so I'll keep asking the questions. Thanks again. Alan

User
Posted 11 Oct 2016 at 02:45

Hi Alan,

I can't recall another member posting that had HIFU as a primary treatment.

I had HIFU within a trial in July 2015 as salvage treatment for failed RT, so my circumstances are seemingly different to yours.

My PSA immediately before HIFU was 1.99 and after it 0.39 rising to 0.73 a couple or so months ago. From latest scans they believe there is a very small tumour in the prostate but are in no hurry to do anything about it. (My experience of UCLH is that nothing moves quickly!). When I spoke with my consultant in August 2016 he mentioned me having another template biopsy but on a smaller scale. Maybe, if this happens they will do HIFU again thereafter. I must chase this up.


i

Barry
User
Posted 15 Nov 2018 at 12:21

Seems no one has posted much on this subject for a while so I thought i would include my more recent experience. My original diagnosis was in 2011 PSA 5.3 Gleason 3,3, age 62. I had a clinical trial of PRX302 focal injection in 2015, PSA 6 Gleason 3,4. After that my PSA didn't change much but a targeted biopsy said my Gleason was now 3,3 so that was an improvement. That was my first actual treatment. My PSA rose steadily over the next two years and was 10 when I had my FOCAL HIFU treatment in May 2018. I was a bit disappointed three months later with a PSA of 8.34 but 6 months post HIFU it is 6.99, the lowest it's been for nearly three years. I had been told prior to the HIFU that I have a large prostate and a PSA of up to 10 was not unexpected. However if the rate of increase had continued it would have been around 11 so I am beginning to believe that the HIFU has knocked my localised problem right back. I would also like to add that I did have a few issues after the HIFU, prostasis, but gradually I am returning to completely normal bodily functions; for a 70 year old this year I am pleased about that. If anyone is still following this conversation please update your experiences. Thanks.   

User
Posted 18 Nov 2018 at 07:36

Hi again.

Update on my PSA etc It has continued to rise from 3.4 in September to 4.3 in August 2018. However a biopsy in September has shown two ‘low’ risk cancer areas in both sides of the prostate. Unfortunately a blood test last week has shown a PSA of 12.8 (re-test 12.1) so I am obviously concerned as this would seem to indicate a serious problem. I’m seeing the professor in charge of the HIFU trial on Tuesday to discuss! Regards Alan

User
Posted 18 Nov 2018 at 13:05
Providing you are a suitable candidate it is possible to have salvage RT for failed HIFU if not previously given, should it be needed. HIFU could be repeated but less likely if cancer is in both lobes.

It might help further if you discuss your situation with an oncologist.

Barry
User
Posted 18 Nov 2018 at 13:53

Good luck on Tuesday Janesy. There are lots of reasons for your PSA to be suddenly higher such as a UTI or Prostatis, especially after a Biopsy. Hopefully that is what it is, not nice but a course of antibiotics may be all that is necessary. David

User
Posted 13 Dec 2018 at 10:10

Hi Everyone. Thanks for you support. Well, good news, scans on prostate and bones seem to be clear and PSA now dropped to 4.6. Apparently sudden rises in PSA are not uncommon although worrying for the individual. Back to 3 monthly blood tests to monitor the situation and I feel reassured (I think). Thanks again and good luck to you all.

Alan 

User
Posted 13 Dec 2018 at 11:32
That’s good news indeed Alan. Hope you remain well.
User
Posted 13 Dec 2018 at 11:39
Good news Alan,so no reason not to stay just with the monitoring. My PSA is still climbing albeit slowly 3+ years after HIFU and a PSMA scan and an MRI scan has showed this is at least partly due to a new small tumour in my Prostate. Whilst a man still has a Prostate, even a radiated one and/or been subject to HIFU, there is always the potential for tumour regrowth. I am currently awaiting the results of a biopsy to learn whether I will be given further HIFU, just be monitored or recommended to have HT.
Barry
User
Posted 13 Dec 2018 at 17:26
Excellent news for Alan. For myself things are definitely looking up, for almost two weeks now I haven't had to get up once in the night for the loo, and that's despite my wife insisting I have a glass of water before I go to bed. Barry I hope your Biopsy result shows the new tumour as needing no immediate treatment.

David

User
Posted 14 Mar 2019 at 09:52

Thanks for other posts. Blood test last week shows PSA at 11.2 so not sure what is going on now, last biopsy showed minimal amount of low grade disease. I have a metal hip so the scans are always that useful. I'm going to have another blood test in 6 weeks and then a decision will be made on way forward. Feel a bit in no mans land! Best wishes everyone. AL

User
Posted 14 Mar 2019 at 11:14

Hi Janesy after two decreases in my PSA mine went back up a bit last time. I am in the same disappointed mood you are in. I've just had an MRI and waiting for the outcome of their weekly meeting to discuss the result. Keep your chin up. All the best. David 

User
Posted 14 Mar 2019 at 20:59

Thanks Dave, I think the uncertainty is the worst part. Hope your review is positive. Regards Alan

User
Posted 08 Apr 2019 at 12:25

Hi everyone,

 

I work for Prostate Cancer UK, in our research communications team. 

 

Recently, we funded a new clinical trial which aims to test focal therapy (treatments like HIFU and cryotherapy, that aim to treat just the cancer and spare healthy tissue) against standard whole-gland treatments. We're really excited about this new research because we think it has the potential to help make HIFU widely available to men in the UK.

 

To help make our supporters aware of this new research on focal therapy and HIFU, and of our clinical research in general, we have built several new pages on our website. 

 

We want to make sure these pages are as useful and easy to understand as possible, so we're looking for volunteers who can navigate the webpages, and then feedback to us by completing a quick online survey (10 minutes). I thought, as this thread is dedicated to HIFU, some of you may be interested in helping me with this. 

 

You can find the pages and the relevant surveys here: 

 

 

    1. Focal therapy webpage, and survey

 

    1. Clinical trials webpage, and survey

 

 

 

 

Thank you in advance for your help. Please feel free to get in touch if you have any questions. 

 

 

 

Ruby 

 

 

 

Research communications officer

 

Prostate Cancer UK

 

 

 

N.B - the HIFU trial has not begun to recruit participants yet, but once it does we will add it to our clinical trials pages. 

Edited by member 08 Apr 2019 at 17:13  | Reason: Not specified

User
Posted 11 Apr 2019 at 11:33

Hi again everyone,

If you haven't had a chance to check out our new web pages on HIFU and focal therapy treatments, and clinical trials, we would still really appreciate your feedback!

We just need a few more responses to make sure we get reliable results that we can use to make our webpages as useful and informative as possible.

Each survey should take you just ten minutes, and will be a huge help to me and my team.


Focal therapy webpage, and survey

Clinical trials webpage, and survey

Thank you in advance,

Ruby

Research Communications Officer, Prostate Cancer UK

 
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