Updated Health Position - Dated: Monday, March 17, 2003
Dennis had been doing the B17 therapy for many months and his PSA lowered from 7.8 to 5.4 then 4.9. However, because the treatment is cyanide based the government have now stopped it coming into the country, Dennis was devastated and his count began to rise again to 6.5. I went straight into the internet and spent many hours looking for the best alternative, eventually finding the E mail address of the head of Urology in Belgium and as a last resort thought I would mail him and explain Dennis's situation. I offered a brief outline of Dennis's problems and explained that I had found papers about cryosurgery with his name on, so asked whether he thought Dennis could be a candidate for this.
I was shocked when I received a reply the next morning saying that he thought he was a good candidate for cryosurgery etc, however, he thought he was also a candidate for a newer non-invasive surgery called HIFU. (High Intensity Focused Ultrasound) The doctor has communicated regularly through E mail and we have arranged to go to Belgium this week for a consultation. If after this Dennis is a suitable candidate we return for the treatment, which entails a two to four day stay in hospital and back to work within a week.
This is the treatment that Dennis has opted for at this time, it's non invasive, done with an epidural, (spinal injection) and recovery time is good. He doesn't want an R.P., which is what he has been offered in England; he says he would rather have quality of life than quantity, (at least, that is how he feels now). The treatment costs about 5000 Euro, but worth every penny if it kills the cancer cells.
Today we went to see our consultant in England to explain what we were going to do, and although he still thinks that an R.P. is the best option, he thinks that HIFU is a good second choice. (No, or very little side effects) He says that HIFU for Dennis has a three out of four chance of being successful, which in Dennis's book, as a gambling man, are good odds. Our local consultant has also said that he will support us through it, which is brilliant, considering the unknown when we return home.
I hope we are not chasing rainbows, only time will tell, I have not yet heard this mentioned on your site, maybe it will be an option for others, although I do think it depends on the individual PSA and Gleason count.
Updated Health Position - Dated: March 26, 2003
When he stopped taking the B17 his count started to rise again, initially 7.8, with B17 it went to 5.4 then 4.9, when the therapy stopped it rose to 6.6. I suppose the information on alternative options are just not made readily available. Thank goodness for the Internet, I feel I have learned so much in a short time. But what about those people without access to Internet!!!!!!!!!!!!!!!
Our visit to Belgium. The consultation went really well, he was a genuinely nice guy who made us feel as relaxed as possible. He started by going through all the therapies that we have already been offered, radical prostatectomy, radical radiation etc, giving all the known side effects. Finally he talked about the HIFU, saying he knew that was what we had come all this way for, but as a consultant he had to ensure we knew all options available. He explained everything in great detail. (While having a laugh on the way)
The procedure will be done using an epidural with a light sedation, he said Dennis can either sleep or he will talk to him. The reason for the sedation is that you have to lie completely still on your side for about two hours. (Not a good thing to move because the cancer cells are only in one half of Dennis's prostate, and in order for Dennis to remain potent, the consultant will only use ultra sound on the affected side and do nerve sparing. The 180-degree heat of the ultra sound kills the cancer, similar to the freezing procedure in cryosurgery. The beauty of the treatment is that if the cancer returns in say five years, they can repeat the procedure.
Then came the tests, with which the consultant was very thorough. (One and a half hours). He did several scans, internal examinations and tests and came to the conclusion that Dennis would not need a TURPS first because his prostate is not enlarged. (Sometimes they have to re-position the prostate before they can do the HIFU.) He was even able to show us exactly where the cancer was, information that they had been unable to give us in England.
He asked Dennis to go away and think about it, however, Dennis had already made up his mind to go ahead with the treatment and wanted to book a date there and then. I think psychologically this is the treatment that will suit him, non invasive and an early recovery to enable his return to work after a week. (If he had had an RP we would have had to sell our business, because he would have been off for at least 10 months.) Dennis has always said that he prefers quality of life than quantity and psychologically could not face a lengthy incontinence period etc. However, if this works, (they are using it in several countries), this consultant has personally done 200 or more with a high success rate, what have we got to lose?
Furthermore, the one and a half hours cost us £50; in England a consultation of that length would have been nearer £200.
A date has been fixed for the 4th May, but as there are no flights on a weekend we are going out on the 2nd May and staying with friends who will take us to the hospital on Sunday 4pm to prepare the bowel etc for an operation on the Monday morning. Dennis will have a catheter in for a while, (unsure how long) but we have booked a flight home on the Tuesday 6th May. He said the procedure is often done as an outpatient procedure, how much easier can it get?
I hope this will help others to look further a field for treatment, at least to let them know what is available, at the end of the day it's their choice and we all have choices to make throughout our lives.
[Update 18 May 2003]
We arrived at the hospital in Belgium at 4p.m. to a mass of form filling, (luckily we had a Belgium friend with us), however by 4,30pm we were in our room. It was more like a hotel suite with a television and a wonderful view all over Belgium.
8p.m. a nurse arrived to administer the dreaded enema, essentially to prepare the bowel area for the HIFU treatment. Little did Den know that at 6a.m. she would be back to administer another enema.
8a.m. the surgeon arrived to discuss the operation, (any questions etc,)
9am. pre op jab.
9.15 a.m. taken to theatre. (Den felt quite relaxed)
1p.m. Surgeon arrives to explain to me that the surgery had gone very well, he had scanned the half of the prostate where the cancer was, and done the nerve sparing for potency to remain. (which returned the next morning, much to Dens delight, however, it will be a little while before he can test that). Surgeon said the op took 3 hours and he was now in intensive care to recover. (for 3 hours)
3.30p.m They brought Den back to room and he said he felt fine, however, because of epidural injection, he was having problems with moving his legs. (which I found out afterwards was the reason he spent all that time in intensive care.) His legs and feet were like blocks of ice. He spent the rest of that day in bed as told and by the morning he was able to get out of bed. They kept asking him if he had any pain, but Den said that other than the catheta in his stomach being a little uncomfortable, he felt fine. The surgery was non invasive so there were no other open wounds to be concerned about.
The surgeon arrived and confirmed that he was very pleased with how the op had gone. He felt it was ok for us to travel home as arranged that day so we left the hospital at 3p.m.
I managed to get a wheelchair at the airport for Den because we had a five hour wait for our flight. The staff in Belgium were excellent and pushed him to the door of the plane. However, it was a bit different when we arrived in England, he had to walk down steps for the first time and no wheelchairs. We eventually arrived home at 10.30pm. exhausted.
After we arrived home Den started to shake from head to foot, his whole body had gone into shock. I warmed him with bottles and eventually he slept. Now after two weeks of dressing his catheter, his stream is beginning to correct itself, he was told to empty his bladder naturally and then let any excess out through the pipe. However, he is not allowed to remove the pipe until there is under 50ml every time he goes. He thinks now that another two or three days and he will have it removed.
We now have to wait for 4 weeks from the op to have another PSA test, which should have dropped dramatically, fingers crossed, and then see his consultant here in England, who has said he will offer any follow up to save us flying to Belgium.
My husband has recently had another PSA test, results 0.1, which is basically as low as it can be. He feels fine and has no side affects from the operation.
Sex life, with the help of Viagra has been normal, no problems in that department. He knows he is a very lucky man, and appreciates the second chance to live his life to the full.
I only hope others will benefit from the information and the operation becomes readily available for all.
Just a line to say everything is still going well.
Last PSA still 0.1, which is brilliant, Den has had no side effects at all, everything in working order.
We are going to a meeting on Wednesday to try to promote the op. The surgeon told us that he traveled to Liberia recently to promote HIF. He had brilliant response, all very interested, although he says there are some elderly professors that don't like change so need some convincing.
Just an update on Den's HIFU, his PSA count is now 0.07 ng/ml, which has probably been the case for a while now. He asked for the test to be sent to another hospital for a more accurate reading, so its probably been that low all along, which is great.
Still no side effects and everything is in good working order. Having quite a lot of interest about HIFU from the site, which is good, and the surgeon is quite happy to explain HIFU to those interested. He is a wonderful guy.
The update on Den is that he has had no problems or side effects at all since our last contact, January 2005, (can't believe it was that long ago).
It is three years next week since he had HIFU, and gosh that has flown by. All seems like a bad dream now. Den's PSA has stayed 0.1 or lower since the last update, and he is 100% fit and well, also the Urologist only needs to see him once a year now for checkup. (His last PSA was two weeks ago)
I have sent many men to Belgium for HIFU, from all over the world now, and many had read our story on the YANA site, our local site or an American site that has our story on. OF all the men that have had the HIFU, we have not heard of any having any lasting problems, and any at all were only the first few weeks trying to get their urine flow back to normal. I think one had to return to hospital to have a TURP op because of sludging, small pieces of tissue from the procedure, blocking the flow.
I try to keep in touch with all I have sent over and I think most would opt for the procedure again if necessary.
Hi, sorry its been so long since last update, but when all is well one tends to forget, and time passes so quickly. Den is absolutely well, no side effects whatsoever, and everything in working order.
Thought you may like a list of his PSA from beginning to latest, over five years.
18.7.02 - 7.9 (diagnosis)
2.6.03 - 0.2 (after HIFU)
18.8.03 - 0.5
6.9.03 - 0.1
16.1.04 - 0.1
15.3.04 - 0.1
8.9.04 - 0.1
18.1.05 - 0.07
16.5.05 - 0.14
6.10.05 - 0.10
24.3.06 - 0.1
27.9.06 - 0.11
1.5.07 - 0.14
Den will see his specialist once more and then signed off permanently. Best wishes to all, and don't hesitate to contact.
This is an update for Dennis Moore, written by his wife Thelma. Den has now been given the final all clear at our local hospital, who has been following up his progress for the last five years. Hence, no further appointments unless requested.
Den's PSA has remained stable at around 0.1 for the last five years, since treatment, and has had no side effects whatsoever. He is in good health and looking forward to his retirement very soon.
We wish you all the best whatever treatment you choose, and if Den had to choose again it would be HIFU every time.
Blessings, Thelma & Den
Not much to add since last mail Terry, PSA 0.1 rechecked now on a yearly basis. No other side effects whatsoever. Getting ready to retire now.
There has been no changes since the last update, except PSA is 0.17. Everything else is as it was in last update, and hopefully will continue to be so for many years to come.
We wish you all as happy an outcome as we have had and wish YANA all the best in continuing this site. A minefield of information for all to learn from, not as it was when we began our journey, when it was difficult to obtain info needed. Assisting each other through this journey offers great comfort to many.
Thanks Terry and all those whose help is invaluable to others.
Den is still keeping extremely well except for the odd aches and pains which I understand are normal for a 68 yr old, lol. His PSA has remained low, the last being 0.2, which his Surgeon is more than happy with.
It is almost nine years since we flew to Belgium for HIFU, and many men from around the world still make contact with us for information about the procedure. The most recent fella being from your part of the world, who is also going to offer his story to your site. [Not sure who this is? Haven't had a new HIFU story in a while!]
Den would still definitely opt for HIFU if the need ever arose again, the long term benefits have proved themselves many times over, not only with Den but others too.
Good luck to you all, I pray one day we will be like the unknown tribes of South America where there is no Cancer, no Kidney disease, no liver disease and no heart disease, no pharmaceutical medicines, only the natural plants that God gave us. [But a lower life expectancy too!!]
Thelma & Den
After 13 years, every thing is good PSA 0.20.HIFU..Must be the best option.
I still believe HIFU to be the best option for treatment.
Dennis's e-mail address is: firstname.lastname@example.org