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Old 09-29-2010, 07:53 PM   #1
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Unhappy What is the best I can expect

I suppose that is a very open ended question as I know eveyone is different however let me explain. I am facing robotic prostatectomy in about 7 weeks time as I was diagnosed with early stage cancer about 18 months ago. My psa went from below 1.0 to 2.8 in a six month period and was sent for a TRUS biopsy which showed positive adenocarcinoma in 10% of one of six samples taken - very early stage, I also got the dreaded sepsis following the biopsy. I have a poor family history when it comes to this disease with my maternal grandfather dieing at age 66 and his eldest son (my uncle) dieing at 65 after a two year battle. My father got it and died at age 72, I am now the youngest in the family to be diagnosed. My Gleeson score was given at 5 or 6 - can't remember offhand and I was put on active survailance with 3 monthly psa which then climbed to 3.8 for nine months and then three months ago jumped to 5.0 which gave me a big scare as I was hoping there would be no progression. Like everyone that gets this disease I had checked out the best urologist and the available treatments when the time came and had already selected a Specialist at a Brisbane, Queensland Australia hospital.
Following the jump to psa 5.0 I felt like I was playing Rusian roulette and it was not going to go away, so Iwent back and saw him and we both agreed that due to family history and my relativly (57) young age that robotic removal of the prostate was my best chance of a cure. A few days ago I found this forum and seem to be reading a few horror stories regarding the outcomes of RP especially as to the period of time with incontinance, this is probably my area of greatest concern with many here saying they are still having problems after 3 to 6 months or longer, hence my question - is this always the case or is it rational to hope that it may be something shorter.

 
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Old 09-29-2010, 08:22 PM   #2
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Re: What is the best I can expect

Rebel,
All these types of forums by their nature will paint a darker outcome, just because they tend to attract people with problems. The one's who recover and move on just don't post as much. You will be, what you will be -- very hard to judge how you will do by how others fared.

rbbb

 
Old 09-30-2010, 01:57 AM   #3
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Re: What is the best I can expect

I am not sure of the exact time but I had control in less than 4 weeks, my brother in law took about 8 weeks

John

 
Old 09-30-2010, 06:10 AM   #4
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Re: What is the best I can expect

It took me six weeks, but I'm no longer even using pads. I'm 58, so perhaps my "youth" comes into play.

Tom

 
Old 09-30-2010, 05:09 PM   #5
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Re: What is the best I can expect

Thanks for the encouraging news, it is sort of the time frame that I had in my mind it would take so lets hope that is to be my experiance. It is also part of the reason I have chosen robotic surgery as they do claim "a faster return to normal activity" which I have always assumed meant urinary and hopefully erectile function. Likewise I am hoping my relativly young age and early stage of the disease will also help. I have lots of other questions about what I am likely to experiance but I will put these up in a new thread and thanks again for those replies.

 
Old 10-02-2010, 12:34 PM   #6
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Re: What is the best I can expect

Being you live in Australia have you looked into ultrasound? Surgeons won't recommend it, but you should take a look, I had the ultrasound treatment, high intensity focused ultrasound, it was over in a couple hours and I was back into life.

 
Old 10-02-2010, 10:26 PM   #7
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Re: What is the best I can expect

Quote:
Originally Posted by tomi View Post
Being you live in Australia have you looked into ultrasound? Surgeons won't recommend it, but you should take a look, I had the ultrasound treatment, high intensity focused ultrasound, it was over in a couple hours and I was back into life.
Hi tomi, I have not heard or read anything about that treatment being available in Australia. I seem to recall seeing something on tv. a year or two ago about it and how it was going to be the new big advance in prostate treatment but nothing since but I will google it and see what I can find - thanks.

 
Old 10-03-2010, 11:44 AM   #8
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Re: What is the best I can expect

Hi rebelone,

I'm responding to your response about tomi's post on HIFU. You wrote:


Quote:
Originally Posted by rebelone View Post
Hi tomi, I have not heard or read anything about that treatment HIFU being available in Australia. I seem to recall seeing something on tv. a year or two ago about it and how it was going to be the new big advance in prostate treatment but nothing since but I will google it and see what I can find - thanks.
Be sure to check the research that has been done as well. Unfortunately, while a lot of us held out great hope for HIFU a number of years ago, and while results at the two to three year points for follow-up of patients looked to be adequate, results for patients at about five years or more after therapy are now being published by leading centers and they are disturbing.

The combined burden of side effects from HIFU does look at least competitive if not superior to other options , but, at least to date, cancer control success rates are well below what more established therapies are achieving around the five year follow-up point. What is especially unnerving, the success rates for HIFU appear to continue to fall as each year of follow-up is tacked onto the charts.

Hopefully experts with improved techniques in HIFU will emerge who achieve decent success rates long-term. That may already be happening, perhaps for tomi and other posters on the board, but with not enough follow-up to show who is leading the pack, backed by published reports in respected medical journals. There have been several threads about HIFU on this board.

HIFU may prove to be the most appealing choice for you, but if you make an informed choice of your strategy for dealing with prostate cancer, including learning about other options, your outcome will probably be better than if your choice is not well informed.

Take care and good luck,

Jim

 
Old 10-04-2010, 04:17 PM   #9
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Re: What is the best I can expect

Thanks Jim for that point of view. Over the weekend I found two hospitals in Sydney that do the HIFU and as you sugest there are certainly a lot of questions yet to be answered on this treatment. At least one hospital was using it only on patients with less than 10 years life expectancy - if I have interpretred the info correctly. Being that I am only 56 I would hope that I have more than 10 years left in me, that is why my specialist recomends that surgery is my best long term option for a cure, and reading between the lines I think that is what they are saying also. Whilst I would do just about anything to avoid surgery I realise that I have little other option and whilst I realise that my cancer is still (hopefully) early stage and low grade the outcomes of this disease in my family is not good. I would hate to think that I had put off doing anything and sudenly find that it is too late and to take this approach ie active surveilance as I have already done for the past 18 months would mean that I would have to have annual TRUSS biopsy and after my experiance with sepsis from the original one I am not prepared to do that again not to mention the stress I feel everytime the psa jumps up another notch.
Merv.

 
Old 10-06-2010, 12:09 PM   #10
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Re: What is the best I can expect

I'm only 60 and expect to live a lot more years myself, the technology has advanced quite alot since the men in those studies. Look further, find a doctor who only does HIFU, not someone who does both surgery and hifu, a cryosurgeon usually is the best bet.

My PSA is undetectable and I had no problems afterwards, all functions are perfect.

 
Old 10-06-2010, 01:47 PM   #11
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Re: What is the best I can expect

You might want to look at the treatment options decision tool in the "stickies" above. It leads you to therapies that may be appropriate for your particular PC and gives data on expected outcomes and side-effects. In the emerging treatments section, it discusses HIFU, cyberknife, etc. With your early stage and relatively good biopsy results, it seems like there may be many appropriate options for you.

The only omissions I can see on that site that may be of interest to you are High Dose Rate (HDR) Brachytherapy and Intermittent Androgen Deprivation Therapy (IADT).

Last edited by Tall Allen; 10-06-2010 at 01:59 PM.

 
Old 10-06-2010, 05:18 PM   #12
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Re: What is the best I can expect

Quote:
Originally Posted by tomi View Post
I'm only 60 and expect to live a lot more years myself, the technology has advanced quite alot since the men in those studies. Look further, find a doctor who only does HIFU, not someone who does both surgery and hifu, a cryosurgeon usually is the best bet.

My PSA is undetectable and I had no problems afterwards, all functions are perfect.
I have just made contact with a Surgeon who performs this proceedue at Prince of Wales Hospital in Sydney NSW. I have had my hopes dashed somewhat in so far as that this proceedure is not covered by private health insurance and at a cost of $20,000 min. just for the surgeon this is a procedure for the wealthy of which I am not. We have already had to organise finances for the Robotic Surgery which will be somewhere between $8,000 to $10,000. Just at the moment I feel very disapointed but I guess that will pass............
Merv

 
Old 10-08-2010, 12:36 PM   #13
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Re: What is the best I can expect

rebelone,

HIFU is standard practice in Europe, costs $6,000. USD in Italy, $10,000. in Switzerland, and anywhere from $6, to $12,000. throughout Europe. It costs $25,000. for American doctors to treat someone off shore, remember there aren't any costs later on. I was very disappointed to hear Australia doesn't cover it, I thought you guys would be different, you are the same as Canada and England, at least you can get it there, we must leave the country.
With your low scores I hope that you take your time, most of us are sorry we commited so quickly, statistics say death rate from prostate cancer hasn't improved even with all the treatments, you have much time to really make sure you are doing the right thing.

Have you asked about when HIFU will be covered? Rumor here is within two years.

Last edited by tomi; 10-08-2010 at 12:45 PM.

 
Old 10-09-2010, 04:59 PM   #14
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Re: What is the best I can expect

Hi rebelone,

I wanted to make sure the context was clear for points that Tomi made in his post #14. He noted this:


Quote:
...
With your low scores I hope that you take your time, most of us are sorry we commited so quickly, statistics say death rate from prostate cancer hasn't improved even with all the treatments, you have much time to really make sure you are doing the right thing....
I recall hearing something along that line about death rates - such as deaths per 100,000 - not improving for prostate cancer, though I'm expecting that to change when there is a major update of results. However, it's important to keep in mind that the death rate is stunningly low, compared to the death rates for many other major cancers. The number I recall hearing again and again is just 3%. (In fact, while that rate can certainly be improved, hopefully to 0%, there isn't a whole lot of room for improvement because it is already so good.)

I know statistics best in the US, and, in the US, 99.4% of white men, and 95.9% of black men were survivors at the point five years after diagnosis, as of a few years ago. (Contrast that survival rate to 15.9% survival for lung cancer patients at five years, 90.5% for breast cancer patients, and 66.3% for colorectal cancer patients.) In fact, 95% of men with higher-risk prostate cancer are alive at ten years since diagnosis! (Me. ) Those rates may be lower in Australia because screening for prostate cancer is widespread in the US, though not universal, so many prostate cancers are caught very early. I don't know whether screeing is widespread in Australia.

I also suspect that, even if the 3% death rate has not improved, survival time with a decent quality of life has improved greatly.

This is all in line with what Tomi was posting, with his main emphasis on the key point to take your time to make a wise decision, but I wanted to make sure you were looking at it from the right viewpoint.

Take care,

Jim

Last edited by IADT3since2000; 10-09-2010 at 05:03 PM. Reason: Added previous post # as reference right after posting.

 
Old 10-09-2010, 09:43 PM   #15
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Re: What is the best I can expect

Hi again Jim, thank you for your well informed input, you are certainly a wealth of knowledge. I am not really that into statistics other than this disease has been 100% fatal in my family and yes I probably realise that I could possibly have plenty of time to chose a treatment however no matter how much I mull it over and try to to "get out of this" the decision to not to do anything is just not siting well with me, I know this can be a slow moving disease but I don,t want to get to a point where I wished I had done something about it at an early stage. My maternal Grandfather had little or no choice in 1966 but his eldest son / my uncle did about 10 years ago but he chose not to, possibly due to the fact that his second wife was some 25 years younger than he and I supose the ED thing would have been a big thing in his decision, my mum / his sister also said that he did not expect it to advance and when it did it was certainly not at the pace anyone expected - about 2 years from diagnosis to death. I have spent the weekend talking things over with my family and they all feel that I should go ahead with the surgical treatment - just getting more confused by the day.
Merv

 
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