Postive Surgical Margin rates of Open versus Robotic, 3%, 8%, etc.

Somebody said...
So, yes I think there are people opting for surgery, or being pushed into it, when they don't need to, or don't need to rush into making a decision. However, the trouble is that as yet nobody has indicated how you're meant to tell if you have the nasty or slow PCa.!!!

BINGO, we have a winner!

I have no disagreement with the statement that many of the prostate removal surgeries may have been unnecessary, from an overall view of the entire population. But when I made the decision about my treatment I wasn't thinking about the entire population-just me. Fortunately, I don't live in a country that limits what health care can be provided to its citizens based on statistics of the overall population.

I knew there was a significant chance that I was one of the 80% of surgery patients that one doctor said had an unnecessary prostatectomy, but I liked the statistic better that said if I had my prostate removed, that with my staging, I had a 95%+ chance of eventually dying from something other than PCa.

Hopefully, 20 years from now, the medical care available will be able to pinpoint the indolent vs aggressive cancers prior to treatment.

Dan

Normek,
sorry to confuse you. I satated that Edward most likely had insignificant cancer. I do not know his prostate size so I don't know his psa density, but the other factors that signal indolant cancer are his G6, his number of cores positive, 8% and his psa doubling time which is well above three years.
I personnaly recommend that anyone considering either surgery or active survelience get a color doppler ultrasound. In this way you will have the exact size and location of the tumor and can make a much better decision. If I had to bet money, it would be an even bet that if Ed had another biopsy tommorrow it would not hit that spot of cancer.
Questions,
To make things perfectly clear I'm not a doctor and don't pretent to be one. I've got an advanced degree in operations research, which means I know how to analyze and sift through a lot of data. Both my parents were doctors so I have an above average knowledge of medicine. I've been dealing with this PC issue for over 12 years and have read more books and papers on prostate cancer, especially PC diagonostics than 99.5% of the urologists out there. I had 7 urologists to date and I can assure you that I know more about PC diagonostics than any of them by a long shot. The urological community in general is not up to date because it is impossible for a normal urologist who divides his time among all the urinary issues a man or woman may have to read all the papers on prostate cancer unlesss that is his only speciality.
I would never suggest that anyone take what they find on this forum and act on it without doing their own research or asking their doctors about it. I embarked upon this learning journey because I came to the conclusion after 10 years that my doctors really didn't know that much about PC, and if I wanted to beat this disease I would have to learn about it on my own and be my own advocate.
I believe there is a lot more information a patient can get besides a psa and a gleason score in order to come to a treatment decision, and all this information taken as a total can give a pretty good idea of the status of his cancer.
JT

I assume prof Scotting is talking about treatment following the standard protocol that you don't treat without having found cancer using something like a biopsy.

And for the record I had just the one PSA test and the one biopsy and both said enough. And then the post op pathology was worse than the biopsy as well so I feel comfortable that surgery was the right decsion for me. (The odds are that if you don't do anything the PCa will not kill you, but regardless of the odds one guy in the room will die of PCa, so I also wanted to do as much as possible to prevent it being me)

It would be helpful if there were also some statistics on levels of prostate cancer found at postmortem in men who died at say 60 and 70. The statistics for the men who died aged 50 may be flawed however, as my understanding is that not everyone who dies has a post mortem performed on them. There are thus three groups:
A - those who died at 50 and had a post mortem done.
B - those that were still alive aged 50 aged and
C - those that died but where no post mortem was perforned.

All the statistics about how many people have prostate cancer when they die are based on studies of those where post mortems were carried out and I'm not sure you can extrapolate statistics from that group to include those on whom PMs were not carried out. (PMs are not carried out on a random cross-section of the dead but on a specific group where the cause of death etc is not clear.)

Yet again we are confronted by statistics, when what really matters are our own indiviidual numbers.

Alf

You should also look into High Dose radiation. Unlike permanent seed implant brachytherapy, HDR implants a high dose radioactive seed on the end of a wire through numerous catheters placed throughout the prostate, radiates the area and is then taken out. Nothing remains in you. The procedure is much more accurate than the seeds and generally has fewer and less serious side effects. Check the pioneer on this Dr. Demanes at UCLA. Website is cetmc.com .

I used the HDR treatment. I am in Atlanta and we have a renowned permanent brachytherapy center that I consulted. There are also several centers doing the HDR. My urologist suggested it to me as he advised it would pose less side effects than surgery.

Just an observation on your comment that daVinci is no less
painful than open. I haven't had open, but did have two hernia surgeries and the daVinci RP was no comparison to the hernias. The only real pain I felt was when the tiny holes were healing, and it was Tylenol pain. Not much pain moving around. The catheter was no fun but that goes with both surgeries. However, pain is way down the list of choosing a treatment method, since it's temporary and there are always pills.

Thanks John
Thanks Bill


Alf

Norm, I think you should carefully read what JohnT wrote which is shown below:

"I agree with Casey that you have a very good chance of having clinically insignificant PC which is common in most men, and any radical treatment will more likely do more damage than the cancer ever would."

 

This is John's opinion and not a medical diagnosis.  I think this forum does a real service to patients, especially new ones, by making them aware of some of the possibilities that may not have occured to them or their physicians.  You may disagree with that but I think the value of this forum far exceeds just providing patient support and that the educational value is equally important.

You don't like that and you are entitled to your opinion but I couldn't let this one go without going on record that I disagree with you.

Tudpock (Jim)

This is Forum Guideline #4, word for word:

4. Use good judgement. NEVER rely on information or opinions exchanged via the forums or chat rooms to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs. Remember that what's right or has worked for one person may not be what's right for you.

So new friends, please remember, there aren't any qualified health or medical professionals here on HW, we are all patients, or relatives/friends of patients. We do our best to share our experiences, our advice as we understand it, and things we learn along the way. And we are here for you, as the PC journey is not an easy path for anyone to follow.

David

JohnT did NOT offer medical advice. He gave his educated opinion

Again, I don't post often, but if it looks like a duck, sounds like a duck..... It sure as heck SOUNDS like medical advice despite any and all caveats to the contrary. As was mentioned, being a layman with an interest in PCa is quite different from dealing with many patients with PCa every day...your perspective and conclusions almost have to be different. Which is better? Decide for yourselves, but it would seem intuitively obvious..wouldn't it ?

Guys,
Edward has posted a thread asking about positive margins. The discussion has wandered far off that direction. If anyone would like to follow-up with more debate, they can take it offline or start a new topic and have a field day (as long as you do not violate forum rules).

Thanks for understanding. Let's let the peace prevail.

Tony

This health forum is very informative but also with having a few well meaning but emotionally aggressive responses. I am surprised that there are not more in agreement with Casey59. There is much in the news today about prostate cancer procedures done when they shouldn't be done. According to reports, there are at least 250 thousand men walking around with prostate cancer that don't know they have it. Also, strong reports are that a man will likely die of something else instead of prostate cancer. As has already stated, men that live long enough will get prostate cancer. Let me give you a rundown of what I have experienced over the last two years when I was diagnosed with prostate cancer. Let me jump back to the year 1993. I started having PSA tests done when I would yearly have a FREE prostate exam done sponsored by the local county hospital. The hospital had a group of doctors that volunteered their time in doing this once a year. My PSA was at the time was around 3. Each year it would be maybe a point or two higher after the 3. about 1998, it was 3.6. I wasn't concerned because anything considered under 4 was in the normal range. I also want to say that I am not one that runs to a doctor every time I have a cut finger. My first doctor visit in 2007 was the first time I saw a doctor in 35 years. I'll get to that later. My belief is that if it ain't broke don't fix it. I have always lived right with a good diet and never felt like I needed to go to a doctor. The county hospital stopped the free prostate exams because of budget cuts and I never went for a prostate exam until 2007. I must say that I have never really respected doctors. I have more or less had bad luck with finding a good doctor. I decided that I was getting up in years (I am now 76) and in 2007, I decided to find a doctor and have a complete blood workup done. Everything came back fine and well in the normal range, all but my PSA. It was 5.7. Knowing that anything over 4 was not considered normal, I asked this no count doctor shouldn't I be concerned. His reply was, no that a man my age has a higher reading of a PSA. At this time, I also decided to have a colonoscopy. When I went for an appointment to talk to the doctor doing the colonoscopy, he said, looking at my blood work, "Are you aware that you have a PSA reading of 5.7?" I said that I was and that my doctor said that at my age it was not unusual to have a higher PSA reading. With that, he sort of raised his eyebrows and said nothing. I had the colonoscopy and it was perfect - no polyps or any sign of cancer. In early 2009, I had a dear family member pass away and I was devastated and it really bothered me badly. I was not feeling well so I went to another doctor. By the way, the doctor I saw in 2007 left the community - good riddance. Seeing another doctor, I decided to have another blood workup. I did and my PSA was 9.6. Knowing that tests can be off, I had another one done about two weeks later. It was 8.4 and still high. I was told to see a urologist. I did and he suggested a biopsy. I had it and it showed that I had a number of cancer cells on the left side and a few on the right. I had a bone scan and a CT of my pelvis. Both looked fine - no sign of cancer outside the prostate and nothing shown on the bone scan. I did not like the urologist that I saw and went to another one. I brought the biopsy report to him, along with the bone scan and a disk of the CT done. He said the other urologist didn't do a prostate size. I want to make a point here - both immediately assumed I had an enlarged prostate. I told both urologists that I had no problem urinating and could piss like I could when I was a senior in high school. The second urologist wanted to do an ultrasound of my prostate to see the size. He did and said, "Wow! Your prostate is small and not enlarged at all!" I wanted to say, "Gee, no kidding!" I told him that I didn't have a problem at all urinating. That in itself should tell that I didn't have an enlarged prostate. I weighed all the options. I did research on having a radical and I must say, I can't understand any guy wanting to have a radical in this day and time with other options. It is such a highly dangerous a major surgery. Blood transfusions, long recovery... the list goes on plus, a nasty long scar on your stomach that you never want to look at. I read up on cryosurgery, which if I were to have any procedure, I would consider it. I talked to an oncologist and was almost amused by this little Japanese woman. She started off with having memorized every word from a book about prostate cancer. I had to keep from laughing listening to her. I had brought to her my reports of the biopsy, CT disk and large X-rays (3) of the bone scan. I asked her to look at them and she said that she didn't need to see them and had already seen them, which I doubted. Clearly not impressed with her, I decided to have fun and ask her with the several procedures that can be done, which would she suggest. She said, "WELL, radiation!" I said, "Why, because you do it?" She lightly laughed and said, "Yes." At this date, I have done nothing but eat a good diet and take a lot of supplements. My last PSA reading was 7.2. I will soon be seeing a doctor for another blood workup. I am concerned about having low testosterone. I may or may not have it. Upon ejaculation, I have next to no semen coming out. Because I have chose to do nothing doesn't mean that I am ignorant of my situation. It is MY CHOICE. Clearly, the first thing one thinks of is, if you have a cancer, get rid of it. The big question is, what are the consequences with getting rid of it with prostate cancer? QUALITY OF LIFE means everything to me over longevity. I will NOT live the rest of my life in a bathroom because of incontinence or bowel problems. This also includes ED. Will I live to be 105, we'll see. I'll let you know when I get there. I plan on posting about radiation. From my experience, it is one of the worst decisions to make.

guytalk,

Wished you had broken your discourse into paragraphs, it would be easier to read, and easier to answer. For starters, we all respect yours, or anyone else's choice to either have treatments for their cancer, or to practice Active Suvelience, or if they choose, do nothing.

You have a lot of bad opinions about doctors in general. A better question, have you ever had a doctor that you liked or trusted? When you have had a decent doctor, are you compliant with the doctor's orders? Or do you typically do whatever you want to do? Based on your post, that's a fair question to ask.

You also have a lot of wrong and incorrect views on prostate surgery. For starters, while its a complex surgery, in our day and age, wouldn't be considered dangerous for someone in the correct medical condition. Even with open surgery, which I had, bleeding is rare, and transfusions even rarer. Long recoveries? That is very subjective, depends on each guys condition, robotic typically is a shorter recovery than open, but we have plenty of open surgery guys that recovered fine.

Incontinence with surgery usually is a short term problem for most men that go through surgery. We do have guys that it is an ongoing problem, and they usually move onto to other solutions. ED, varies so much, again, man by man. I had my left nerves cut out, yet never have experienced a day of ED. Other men aren't as fortunate, but between meds and injections, there is usually a workable solution.

You don't have to have urinary symptons to have a bad case of prostate cancer going on. You say you have cancer, would love to know your stats if you choose to share them with the group. At age 56, when I was diagnosed, I had never had a urinary problem in my life, could pee like a horse, never got up at night to pee, did not have any enlarged prostate or infections, etc, and all my digital exams were negative, and I had no history of PC in my family. Yet I had a full blown case of Gleason 7 cancer going on inside me. My tell tale sign, was a rapidly increasing PSA number each year.

You mentioned the PSA score of 4, that is all but old news. We have men with agressive cancers with PSA when diagnosed well under 4.0, regardless of age, and men that had PSA's over 20, that did not have cancer. So even that isn't cut and dry.

I hope you live to be 105 like you want.

Surgery isn't always a perfect solution to prostate cancer, but there are other choices, including a wide range of radiation procedures. Going to be real interested in seeing your discourse on radiation, if you still choose to post it.

David in SC

Questions,
Did you have a follow up biopsy? Did you have an MRIS or a color doppler ultrasound? What was your psa density and psa doubling time?
These are all recommendations to have before deciding to embark on a program of AS as these tests will eliminate many men with your situation.