Mike was referred to Urology in the autumn of 2006. He had consulted the GP following a previous general surgery op and was expecting to be sent for surgical review. His PSA in November was 5.23 and DRE found that "something" could be felt in his prostate.
Needle biopsy took place in December 2006 and he heard nothing for almost four weeks, due to the Christmas break. When the letter came, inviting him to attend an appointment with the Consultant, there was the suggestion that someone accompany him. Alarm bells at this point! We had remained very optimistic, I hoped maybe he simply had BPH (Benign Prostate Hyperplasia) as he felt well and there were no really troubling symptoms. We should have been reading this site, as that seems to be a common factor with many men.
Out of the ten cores taken, three had showed evidence of adenocarcinoma. Only months later did we find that out of those three cores two showed 70% and 80% tumour involvement. Mike was advised to investigate the disease and decide what would be best for him. Watchful waiting, radical surgery and radiotherapy were all suggested, but the possible side effects of the last two were described as fairly devastating.
I started investigating prostate cancer and became worried about the WW option as we also found that a previous PSA taken two years earlier was 2.9 ngml. This seemed to indicate that it was rising fairly quickly. It seemed that the tumour was palpable and later we found the tumour involvement in the cores taken was very high in two of them.
Brachytherapy might have been a choice, but our specialist nurses were able to tell us that our local PCT had recently turned down requests for funding. Cryotherapy and HIFU were treatments I found on the internet, but again not readily available on the National Health Service. The Somerset Prostate Charity was a great help and through that, I found this website and learned that some people had been to Belgium for HIFU treatment. Mike then discovered that someone he knew had also made that trip and it had worked for him. Antwerp and HIFU seemed our way forward! Hopefully it would be the right decision, only time will tell.
April 2007: We travelled to Belgium for a consultation. Dr C D'Hont was a very nice guy, provided lots of evidence of previous patients treated and outcomes. He was very reassuring and much less doom and gloom than we had experienced with local consultants. (Actually we had not seen the same person twice on visits to our local hospital). He performed very thorough examinations, including flow test and ultra sound scan. The outcome was that Mike needed a TURP before HIFU could be performed. This was a little disappointing, but we had the option to have both procedures in Antwerp or try to get the TURP locally. After some thought Mike opted for the local route and the specialist nurses were a great help, both helping with the decision and getting the procedure arranged.
May/June 2007: The TURP was performed at our local district hospital. Mike seemed quite well when I saw him that evening. He had been given a spinal anaesthetic as well as a General, so his main complaint was numb legs; I warned him that when that wore off he might have more to complain about! By the next day he was, in fact, in some discomfort. The dreaded urethral catheter was the main problem! However, the Consultant was very pleased with him, there was not too much bleeding and they removed the catheter the next morning. He had to pass urine twice and they scanned his bladder to make sure it was empty, then he was able to come home.
Over the next 10 days he felt he could not pass urine on two occasions and generally he experienced urgency and the peeing razorblades sensation! With a massive fluid intake and a course of anti-biotic from the GP he recovered well.
We then had to book the HIFU appointment in Antwerp. There had to be a break of at least four weeks and for us it was just over six weeks. This is where we are now and it is a daunting thought. Travelling to Belgium for another consultation on the 18th and hopefully admission to hospital on the 19th. We know he will come home with a supra-pubic catheter - preferable to the previous one? That will be removed when he is able to empty his bladder fully. Will this treatment remove all the cancer cells? Will the side effects be avoided as we hope? Have we made the right decision? This is a scary place right now!
July 2007: We travelled to Belgium on the 18th and had to attend another consultation that evening. Unfortunately Mike did not attend with a full bladder, as this was not specified and we were not aware that this was another complete consultation (as before). The TURP performed in the UK appeared not to be as wide a clearance as the urologist would have liked and we were not given ECG and blood results to take with us (nor did we request them as, once again, not specified by Dr D. Hont!)
There were a few bad moments when we thought we might have had a wasted journey, but following a scan it was felt that HIFU could be performed the next day. Mike had to go in a little earlier than usual to have the ECG and bloods taken. Bowel preparation came later that evening and he was woken at 6.00am the next day for the procedure. Luckily he remembers little about it, except that the spinal anaesthetic seemed to take some time to work! He woke with a supra-pubic catheter in place and had to remain in bed for the rest of that day.
On Saturday morning the catheter was blocked and he needed to pass urine normally without straining, the remainder then to be voided via the catheter. He was moving well and we returned to the hotel. There was some discomfort both from the catheter site and the epidural site, but Mike coped well and we returned to the UK the next day.
Ten days on he was only emptying a very small amount via the catheter so he was able to have it removed at our local surgery. He had to continue with antibiotic cover for two days after removal. Now two weeks after our return from Belgium all seems well, Mike has very little discomfort and although he says he has to concentrate to completely empty his bladder he has no problems there.
First PSA check is in one month and then three monthly if all is well. It seems such a simple procedure compared to RP or EBRT. We hope it is effective. He can now return to work and then to sport (squash and badminton) six weeks after HIFU.
August 24th 2007 First PSA post Hifu - 0.5 ng/ml. Great news! Full activity resumed - in all areas! Mike is still having some urgency, but he is getting more confident at 'hanging on' and it should improve, as long as no other complications arise. PSA will be checked again in 2 months and then a urology follow up at our local hospital. They seem more tuned in to 'alternative' treatments now and the team are willing to continue monitoring Mike.
October 12th 2007 Further PSA prior to Urology appointment 0.18 ng/ml. A flow test is being arranged, as Mike still feels this has not returned to the way it was after the TURP. The Registrar's opinion is that more time is needed for any swelling to subside, but this will be checked. For anyone interested in the cost, we had a full invoice from the hospital in Antwerp at the end of August (in Dutch - that was fun!) and we are due a significant refund of our original payment. Their policy is to charge a maximum amount and then refund as required. Took a bit of time to actually receive it, but it happened eventually!
Good luck to everyone still trying to decide on the best course of action. As someone said to us very early on, there is life after Prostate Cancer!! (That could have been me - Terry!:-)
As far as PCa is concerned Mike is doing very well. His latest PSAs have all been under 1.0.
Unfortunately he has been diagnosed with Parkinson's Disease this year and this has rather put the prostate problems to one side. This cannot be so easily dealt with.
I know not all men with PCa are able to "deal" with it. Mike took the decision to have HIFU and it has seemed to work for him. I do not have the heart to return to the yananow site, but we were very grateful for it at the time and are still willing to relate our experiences to anyone who may wish to contact us.
As far as my PCa is concerned, I am fine. My last PSA was 0.41 and still being checked every 6 months.
Unfortunately I was diagnosed with Parkinsons the year after the HIFU treatment. I am slower than I used to be, but really not too bad.
Hope things don't really come in threes!
Mike
I have more problems than Ca prostate these days. As I said previously, I was diagnosed with Parkinson's Disease in 2008. Therefore the prostate has faded in comparison!
However, I am still checked by the local urology department every 6 months and my PSA has been 0.57 and 0.52 on the last two checks. I still send these results to the consultant in Belgium where the HIFU was performed and he gives us an update as to whether these results are good - they are! Apparently variations are normal as the prostate is still there, (as in radiotherapy), and as long as results are below 1.0, I am doing well. (If there should be a localised recurrence HIFU can be performed again).
I would still say that HIFU was the best thing for me and I am am glad that it was treated then, in view of what life has thrown at me since!
After HIFU in Belgium in 2007 all is still well re PCa. My PSA is rising slightly and local urology team were concerned. Therefore they performed an MRI this year, which showed nothing abnormal. PSA results are still sent to Urologist in Belgium, who suggests biopsies again if PSA results reach between 1-2. But "not to get hung up on PSA results"!
Just an update to say that my PSA results have been slowly rising over the last year or more to 1.04 in October 2012. I was fairly unconcerned, as I still communicate with Dr D'Hont and he gives quite specific advice. However, the NHS team (who do not perform HIFU, or know much about it), were talking about biopsies and radiotherapy. It is hard to convince them that I just want to get on with my life and not stress about PSA results! (I appreciate that a fast rise in PSA might be cause for concern). Thankfully my latest PSA was 0.78 and hopefully the local team might now accept that fluctuations in PSA after HIFU are relatively normal.
So I am just getting on with my life and trying to forget all my health concerns. Good luck to all on here.
After a rise in PSA in October 2012, it began to fall again to 0.78ng/ml and 0.9ng/ml. Latest showed a rise again to 0.99ng/ml. but we continue to send results to Dr D'Hont in Belgium and he feels these results are good six and a half years after treatment. I continue to be monitored locally and as far as my PCa is concerned all is well. I still feel HIFU was the best treatment for me.
I have PSA checks every six months and it has been steadily, although slowly, rising. Last time it was 1.05 and now 1.3 ng/ml. I email results to my Consultant in Belgium and his response was to see if still rising on next check and if so maybe consider biopsies again. He also points out that any local recurrence can be treated again with HIFU. At present I am not thinking about that and I really do not want another trip to Belgium as I have other health issues. Otherwise PCa is quiet and not bothering me!
No further update to my story as all seems to be stable. I have my PSA checked every six months, but as long as the rise is minimal and slow it is unlikely I will have further treatment.
Michael's condition has worsened, but this is due to his Parkinson's and associated dementia. There will be no further updates to this site as his prostate cancer is the least of our worries. He was treated 10 years ago with HIFU and this seems to have kept that condition in check. Just a pity there is no satisfactory treatment for his other problems. Good luck to all, Carol
[In response to a reminder, Carol wrote: Sorry but Mike's dementia makes updating no longer possible.]
Mike's e-mail address is: michael.caro AT yahoo.co.uk (replace "AT" with "@") (but this e-mail address may no longer be valid)
