YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Mike P and Carol live in England. He was 61 when he was diagnosed in Dec 2006. His initial PSA was 5.23 ng/ml, his Gleason Score was 3+3 = 6 and he was staged T2. His treatment of choice was HIFU. Here is his story, told by Carol:

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!

 

UPDATED

August 2007

 

 

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.

 

UPDATED

October 2007

 

 

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!:-)

Carol and Mike's e-mail is: michael.caro@yahoo.co.uk