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Posted 12/15/2009 3:24 PM (GMT 0)
Finally had appointment with Specialist yesterday. went over results of Biopsy 10 samples 3 positive 2 at 1% 1 at 3%.PSA level now at 4.89 a rise of >.50 in the last 5 months. He gave me info on a worldwide study they are doing which I can be part of where 50% of the group will have surgery to remove the Prostate and 50% will do watchfull waiting and be monitored everyI am leaning 4-6 months for 8 years to see if all the surgeries they are doing are necessary, these patients data will be put into a computer and it will decide which group you will be in, if you decide to join this study there is no turning back. I will have to decide in the next couple of weeks if I would like to be part of this group. has anyone else heard of this study ? I am leaning toward surgery but any advice would be greatly appreciated....thanks
Posted 12/15/2009 3:42 PM (GMT 0)
Hello Zimmer,

What is the benefit of being in the study for you? Where is the incentive? You could choose Watchful Waiting on your own with your dr, you wouldn't' have to be part of a group or study.

You said if you join, there is no turning back? Why? Never heard of a study that you couldn't choose to abort at anytime if you feel so inclined. Perhaps there is more to this study or deal than you have posted.

With your stated numbers, looks like you have a good range of treatment options in front of you. Surgery of course, RT, Seeding with IMRT or no IMRT, and Watchful Waiting might be appropriate for you.

The 3 cores that came back positive aver very low % of cancer at this point and you show a Gleason 6.

Perhaps you could clarify about this study.

David in SC
Posted 12/15/2009 4:08 PM (GMT 0)
Zimmer,

You might want to take a look at my post "Brachytherapy Yesterday" (dated 12/12) and a post from yeserday, "Brachytherapy vs. LPR" by stevehuberoilers along with the replies. It will convince you that you are not alone in the struggle to make a decision. The good news is that there is a wealth of information and experience on this forum.

Not clear to me what is involved in the study. Unless there is some specific benefit to you (that is not clear to me) my own inclination would be to forget that and concentrate on making the best decision for your set of circumstances after learning all you can about your options. Best wishes going forward.

Joe

_______________

Age -67 PSA - 4.5 Gleason 3+3=6 Ct and Bone scans negative

Biopsy - Positive in 5 of 8 cores. In those 5 cores, 5 of 11 samples were positive

BT performed on 12/11/09. 84 seeds of Palladium 103. Surgery at 7:30 - Home at 12:30 same day with no catheter. Side effects as expected -  some burning, frequency, urgency, blood in urine which has subsided. Resumed daily walking yesterday.

BT will be followed in 2 months with 25 IGRT treatments. 

Posted 12/15/2009 4:33 PM (GMT 0)
A few of us have to do studies or they'll be using the old gold standard long past it being tarnished and brutally archaic. That said Dave is right about the no turning back, in any study you will have the right to quit at any time. If you fall into the surgery group and you rather WW then drop out. The same if you fall into WW and decide surgery is better for you. I think the outcome of this study has been shown in a number of others and its results will just be another indicating these are the days of over treatment for those with low risk PCa.

Your numbers were similar to mine upon dx so WW is a real option study or not. Thus I see no huge risk in going with WW. Don't pay attention to the latest get it all out ASAP thread that periodically arises in this very pro surgery site. It's your body and the possible after effects you will have to live with. Do what now has recently become shunned and ridiculed words here TAKE YOUR TIME in deciding.

There are also other options to surgery and WW you should become aware of too.
Posted 12/15/2009 6:29 PM (GMT 0)
Zimmer,
I think you may have misunderstood the study, but I may be wrong. On watchful waiting if there is any sign of progression, rapid rise in psa, reduction in PSA doubling time or gleason grade upgrade, treatment is needed. I can't imagine any study that would withhold treatment in these cases. Maybe they actually mean that you can;t decide to have treatment if ther is no sign of progression. about 20% of patients on WW do this because of psychological reasons, not because of progression.
If they will allow treatment on signs of progression I see no downside in this program. So be sure to ask the question.

JohnT
Posted 12/15/2009 6:48 PM (GMT 0)
Hi Zimmer,That study sounds like russian roulett to me.It's your body and YOUR decision do your own homework and don't flip a coin for your decision.that's just my opinion.the words you cant turn back are pretty frightening to me.That is your decision not some study.Take care of your self brother.

Zach
Posted 12/15/2009 7:19 PM (GMT 0)
I realize you live in Canada, and that medicine is different up there, but if I had your stats, I think watchful waiting is in order, on your own, so that you are free to do what YOU think is best.

I don't think that 3 months would make any difference, but again, you have to make that decision.

Good luck, and keep us posted !

Goodlife
Posted 12/15/2009 9:05 PM (GMT 0)
I understand that I am being very vague on the subject about the study, I was at the London Hospital for a 3:20 appointment at 3:00 p.m. 20 minutes early I waited in a full waiting room until 6:40 to finally see the doctor and was basically rushed thru, I really do not know much more than before I has seen him, about the study the person that was to explain it to me had left for the day at 5:00 and I am awaiting a call from her to explain it to me in more detail. I will post the info as I know more............
Posted 12/15/2009 9:13 PM (GMT 0)
good, just let us know when you have full information on this study.
Posted 12/16/2009 12:33 AM (GMT 0)
Hey, this sounds like a "run screaming from the room" deal. The doctor is late, but it is more convenient for the investigator to go home. How many more things are going to happen not because they are best for you but because they are handy for the investigator? This is obviously aimed at people who enjoy being treated like crap -- if you are not in that category, don't even talk to them
Posted 12/16/2009 12:44 AM (GMT 0)
Geezer,
You are my hero. I was thinking the same thing. I might wait to see if the person calls back with an apology before totally dumping them. But I would take today's experience as a sign of things to come.
Jeff
Posted 12/16/2009 1:21 AM (GMT 0)
Confirms my earlier inclination. I agree with geezer and Worried Guy. Doesn't sound like something you want to get entangled with....do your own thing.

Joe67

Posted 12/16/2009 2:32 AM (GMT 0)
Geezer,
You hit the nail right on the head. We sometimes get involved in the details and miss the big picture.
JT
Posted 12/16/2009 2:36 AM (GMT 0)
Hi Zimmer,

Dr. Chin was my surgeon.

I don't believe I had substandard care because I had my treatment here. It may be a bit slower getting done in some minds, but my experience has been good.

I had open RP with Dr. Chin. If you did some research on the man, you would find he's often late for appointments because he has spent another 10-20 minutes with the 10 or so before you on those days he does his hospital clinical visits. He's an ardent researcher and a good surgeon from anyone I've talked to. He heads the surgical oncology group at one of the best hospitals we have.

I believe the study he asked you enroll in was part of a few studies I participated in. I had a fairly high core content and number of hits in my biopsy. I also had considerable pain and several bouts of prostatitis. According to my surgeon, this meant I could have significant scar tissue which could make a robotic procedure difficult. He was honest about that. We discussed all options and I went on and discussed these options with other doctors, including seeds, cryo and HIFU.

The study I participated in is large scale and important. In my case, surgery was the option I decided on. The study had me involved in multiple imaging including advanced ultrasound, CT, MRI and compare that to my surgical outcome. My test results indicated intervention and not WW. You have a small content and number of positive cores. Maybe that is why WW was suggested. However, this same Dr. told me biopsies often miss the target. You need to do your own research and be comfortable with your own decision.

My outcome so far...I was in full control of my bladder within 48 hours of catheter removal. My 3 and 6 month PSAs are undetectable. I have ED even though I had "nerve sparing" surgery and I had EPE detected post-surgery pathology. However, I'm now at 7 months post-op and have done a couple of Trimix injections as the ED oral meds didn't do much. I went and saw an ED doc that is involved with Dr. Chin under the London Health Sciences Centres. After a couple injections, junior is waking up on his own.

I would say I'm doing pretty good. This is my experience, but everyone is different.

If you have this same surgeon, I would say you have a pretty good chance of a good outcome. As far as the no "turning back", I find that difficult to believe as presented.

Good luck in your research and I hope you do well. Keep us posted.
Posted 12/16/2009 2:54 AM (GMT 0)
Mike, I thought that was the same surgeon you used. I know he did a good job on you, and your recovery has been pretty decent. Hope it stays that way for you.

David in SC
Posted 12/16/2009 4:14 AM (GMT 0)

Thanks David,

Zimmer, I've met the girl that is the study investigator several times. She was probably unavailable after 5:00 pm because she was at one of the imaging labs getting another study participant through quickly. Many participants can't be available during regular daytime hours due to work, etc. And, many of the imaging labs run all day (24 hours). One of my imaging appointments was at 7:00 AM and she'd already been there a couple hours. 

Mike


Posted 12/16/2009 5:12 AM (GMT 0)
Many comments above on how barbaric it would be to have a study, call one treatment 'Watchful Waiting' but never do anything with that group regardless of subsequent course of disease in individuals.  And, of course such a study would be barbaric.  But, if you go to the original Watchful Waiting study, done in one of the Scandanavian countries (I'll look up the study reference later when I get the chance), that's exactly what was done.  I read that study when first diagnosed and was APALLED. shocked shakehead skull

IMHO it was like a Mengele (**** experiment) study, or the Tuskegee study (US syphilis in black men)

So, look at the study very, very carefully, particularly if not in a healthcare system that offers freedom of choice (to dump out and seek treatment elsewhere with full insurance coverage).  We need good, well designed studies.  But not all studies are good or in your best interest.

As others have said, you can always choose WW as your current treatment option on your own and retain full freedom of choice.  We will certainly eventually look back on this as an era of overtreatment, but without better diagnostics to determing rate of growth, etc. and better treatments in case rogue cells do metastasize, it's a tough call.  More power to those brave souls who choose to watch and wait, and so fill out the statistics table to balance against other treatments.

If you go the WW route, my only concrete suggestion is to decide before hand what your criteria will be to pull the trigger and shift to an active treatment (i.e. just like invesment strategy), then stick to it unless real new information causes you to reevaluate and reset the criteria.

Best of luck either way.

Posted 12/16/2009 12:20 PM (GMT 0)
A bit of an ethical and moral question here.

Before my Da Vinci in Amsterdam I was given appointments at the hospital three times simply for the purpose of being given information! (one was an evening meeting for patients and partners with a lecture.) On one occasion the doc was running late and I was told about that as soon as I arrived at reception, and it was only about 30 minutes late - he had been called into theatre for an emergency.

During this stage I was asked if I wanted to take part in a clinical trial for a new (anti-incontinence) procedure to give people slings made from part of their own vas deferens at the same time as the RP. They wanted 200 volunteers who would be split into two groups: one would get the new thing and one would not . It was a double blind, so that neither the patients taking part nor the staff seeing you afterwards would know whether you had or had not had the extra procedure.

We were all treated excellently by these professionals, they gave us lots of information and even showed us a video of the procedure. (they even gave us coffee and biscuits.)

Now I am all for being part of the process where current patients do things that will help future patients, on the basis that others have been there before me in ways that have lead to benefits for me, but I declined to take part. (Advances demand new procedures. It must for instance have been a brave guy who was the first person to let himself be given a Da Vinci and I thank him. And my father was a doctor during the 1918/1919 Spanish flu epidemic and he tried a new treatment that was very effective.)

I declined as prior to this everyone had been telling me that I was very young, healthy and fit and would have no trouble recovering from a radical prostatectomy, so I wanted to be able to feel after the op that my recovery was indeed due to that youth and fitness and not due to some fancy new procedure that I may have been given. And I did not want to enter that Russian roulette stage where I might end up in a bad situation because I had had the procedure, but it turned out to have unforseen negative effects, or that I hadn't had the procedure and that it turned out to be the most incredible advance.
I also considered the fact that this additional procedure would make the operation longer.
At no time was I placed under any pressure to take part.

So I can only recommend that anyone taking part in a trial only does so if they get a lot of information up front, and perhaps more accurately if they get given a lot of information about the trial without even asking for it. And get given it in the right kind of way by doctors who treat you as human beings and patients and not as guinea-pigs.
And as for whether you decide to take part once you know the facts, I think that can only be something that each individual can make their own decision about.


In the case of this specific trial: you have to be allowed an escape clause.

If there is no escape clause, then I cannot believe that this trial has been sanctioned by an appropriate (ethical) committee and should therefore be avoided.

Alfred
Posted 12/16/2009 2:41 PM (GMT 0)

English Alf said...
A bit of an ethical and moral question here.

Before my Da Vinci in Amsterdam I was given appointments at the hospital three times simply for the purpose of being given information! (one was an evening meeting for patients and partners with a lecture.) On one occasion the doc was running late and I was told about that as soon as I arrived at reception, and it was only about 30 minutes late - he had been called into theatre for an emergency.

During this stage I was asked if I wanted to take part in a clinical trial for a new (anti-incontinence) procedure to give people slings made from part of their own vas deferens at the same time as the RP. They wanted 200 volunteers who would be split into two groups: one would get the new thing and one would not . It was a double blind, so that neither the patients taking part nor the staff seeing you afterwards would know whether you had or had not had the extra procedure.

We were all treated excellently by these professionals, they gave us lots of information and even showed us a video of the procedure. (they even gave us coffee and biscuits.)

Now I am all for being part of the process where current patients do things that will help future patients, on the basis that others have been there before me in ways that have lead to benefits for me, but I declined to take part. (Advances demand new procedures. It must for instance have been a brave guy who was the first person to let himself be given a Da Vinci and I thank him. And my father was a doctor during the 1918/1919 Spanish flu epidemic and he tried a new treatment that was very effective.)

I declined as prior to this everyone had been telling me that I was very young, healthy and fit and would have no trouble recovering from a radical prostatectomy, so I wanted to be able to feel after the op that my recovery was indeed due to that youth and fitness and not due to some fancy new procedure that I may have been given. And I did not want to enter that Russian roulette stage where I might end up in a bad situation because I had had the procedure, but it turned out to have unforseen negative effects, or that I hadn't had the procedure and that it turned out to be the most incredible advance.

I also considered the fact that this additional procedure would make the operation longer.

At no time was I placed under any pressure to take part.

So I can only recommend that anyone taking part in a trial only does so if they get a lot of information up front, and perhaps more accurately if they get given a lot of information about the trial without even asking for it. And get given it in the right kind of way by doctors who treat you as human beings and patients and not as guinea-pigs.

And as for whether you decide to take part once you know the facts, I think that can only be something that each individual can make their own decision about.

In the case of this specific trial: you have to be allowed an escape clause.

If there is no escape clause, then I cannot believe that this trial has been sanctioned by an appropriate (ethical) committee and should therefore be avoided.

Alfred 

 

Alfred

I know this is off topic, but your comment about your father treating patients during the 1918 FLU EPIDEMIC jumped out at me.  Wow, if I get my numbers right, then your father was 68 years old when you were born about 1961.  I did the math, because my 'grandmother' died in the epidemic in 1918 leaving behind three infant children including my mother.  My grandmother was born in 1896, my mother in 1915 and I was born in 1941.  Did I get this all right?  Interesting stuff.

Posted 12/16/2009 4:23 PM (GMT 0)
Lifeguyd.

Yes my father was 68 when I was born, (after his first wife died he married a younger woman when he was 61) and while it's not to do with this thread, his proven virility at 68 and for a while after, plus the fact that he lived till he was 95 were important factors for me after Dx when thinking about treatments and ED etc, as I wanted to try and live as long as him too etc.

Alfred

(Dad was a doctor in the Bristish Army from 1918-1920 so he was treating flu in Army hospitals in France and Belgium after the First World War - having been in the trenches etc during the fighting. He caught the flu himself of course!)

Posted 12/16/2009 4:49 PM (GMT 0)

English Alf said...
Lifeguyd.

Yes my father was 68 when I was born, (after his first wife died he married a younger woman when he was 61) and while it's not to do with this thread, his proven virility at 68 and for a while after, plus the fact that he lived till he was 95 were important factors for me after Dx when thinking about treatments and ED etc, as I wanted to try and live as long as him too etc.

Alfred

(Dad was a doctor in the Bristish Army from 1918-1920 so he was treating flu in Army hospitals in France and Belgium after the First World War - having been in the trenches etc during the fighting. He caught the flu himself of course!)

Thanks for your response.  I brought this up because I have always had a difficult time relating to historic progression.  When I was told as a child that my grandmother died young in 1918 I had no concept of how long ago that might have been.  For all I knew she might have died during the time of the crusades or the pharaohs instead of Idaho 18 years after the turn of the 20th century. In fact she died only 23 years before I was born.

It is only as I have gotten older have a started to understand how recent that really was.  In your case your father compressed the time by living such an active life for so long.  My paternal grandmother was born in 1868 and lived for 100 years, so she was a part of my life when I was younger. I never appreciated the history that she represented.  I am fascinated by "connections".

On another note the current media hysteria about H1N1 (swine) flu reminds us that it pales in comparison to the ravages of the 1918 spanish flu epidemic.  The 1918 epidemic killed as many as 40,000,000 (forty million) people world wide.  The most devastating epidemic in world history.

Have a healthy day

Guy

 

Posted 12/16/2009 4:57 PM (GMT 0)
.

Hello Zimmer:

My appointment with Dr. J. Chin went similar to yours, that is, my time was for 3.30, the room was full of waiting patients and we finally got to see him by 6.00 and on our way by 6.45.

I didn't mind because the Dr. had, on his own, moved up my appointment from mid December to end October when learning of my numbers, age and advanced cancer.

I had requested to see Dr. Chin for a second opinion and secretly had hoped for him to do the DaVince. This is not to be and it will be open surgery on January 20, and not robotic because of a rather large umbilical heria, something I should have taking care of many years ago.

I have never spend any time in a hospital and still have everything I was born with, except a bunch of brain cells, so I'm rather scared of what I need to go through.

I have only read and heard good things about Dr. Chin

and I look forward to hearing about your next experiences with him. (look up: ratemds dot com, find London and then the doc)

. Good luck in your decisions.

.

Posted 12/16/2009 5:55 PM (GMT 0)
Alf, good explanation to the math issue. My mother is British, she was born when her natural mother was 52 years old, and her father was 70, so similar age spread. She only had one brother, and he was 25 years old when she was born. My grandfather (her father) died the year I was born, so he would have been 95 years old. There is a single b/w photo of him holding me when I was 6 months old in London.
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