This forum is for the discussion of anything to do with Prostate Cancer. There are only four rules:
No fundraisers, no commercials (although it is OK to recommend choices of treatment or medical people based on your personal research; invitations to participate in third-party surveys are also acceptable, provided there is no compensation to YANA);
No harvesting e-mail addresses for Spam;
No insults or flaming - be polite and respectful at all times and understand that there may be a variety of points of view, all of which may have some validity;
Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making
Failure to abide by these simple rules will result in the immediate and permanent suspension of your posting privileges.
Since this is an International Forum, please specify your location in your post.
Question, what should the general reader take home from this discussion thread?
One thing might be to not go for surgery or radiation on the basis of a biopsy with Gleason score of 5 or less.
Another thing might be to choose a color doppler ultrasound as a diagnostic instead of a conventional biopsy procedure if such equipment is available within one's area and if the DRE was negative. And if one's insurance will cover this, I suppose.
I certainly hope that anyone reading this thread will realize that there is more to a diagnosis than one pathologist's opinion after a TRUS guided biopsy.
I don't know how many people who visit this Forum actually go through the Yana site and in particular Surviving Prostate Cancer. I wish everyone would read this and follow the links, especially the section ASSESS STATUS BEFORE DETERMINING STRATEGY . So many men decided on their treatment before they have a full understanding of the status of their disease and as a result may make a choice that is not the most appropriate.
You will see a link in the paragraph linked above to Dr Stephen Strum’s advice on how best to develop a strategy for success.
Making a decision about how to treat a complex disease like prostate cancer is not as simple as buying a new car, yet frequently takes less time.
Hi All, its me Dave! The City of Hope is a CANCER hospital. I was there for my consultation with Dr. Kawatchi (he's done a few surgeries on some of the guys in YANA), a PC doctor. En route to his office, I witnessed many, many cancer patients. Some of you say: "get another opinion." Where? I'm at one of the top cancer hospitals in America. HIS pathologists examined my slides and determined that it was not PC. "David, we look at thousands of these slides . . .you do not have prostate cancer" he tells me. Me personally, "I believed him." The first couple of pathologist? Well, its like drawing a line in the sand: is that a 1 or an I? They actually did me a favor; "give the patient the benefit of the doubt." What do (or did)I do when one of the top robotic PC doctor's tells me: "David, I want you to go see Dr. Bahn. If you have prostate cancer, he'll find it." I mean, when does it stop? I was there in his office being probed again and with my own two eyes looking at the color doppler ultrasound at my prostate. I SAW the 2 areas of discoloration in which he took samples of. Oh yeah I almost forgot; when Dr. Bahn looked at my cancerous pathology report from my hometown urologist he says: "Gleason 5? we don't consider Gleason 5 cancer anymore." Now understand something here boys: this ordeal DOESN'T mean I'll never get PC. But as of right now, with advice from a doctor that has OVER 2,000 robotic surgeries under his belt AND a Radiologist with the latest technology where men from all over the world come to see, there comes a time when you just have to believe. Well, for me, I believe. Just think if I would've gotten surgery from my hometown urologist which I could have very easily have done because "he's a good guy and I trust him" (how many times have you read that quote in the surgical experiences on this site-it'll blow you away!). How many NEEDLESS surgeries do you think have been conducted on guys who didn't ask questions, explore their alternatives and gone beyond a reasonable doubt about their condition? This site, thanks to Terry, tells you in plain english: BIG TEACHING HOSPITALS AND A DOCTOR WITH THE UTMOST EXPERIENCE. Thats what I did and as a result, I was given a second and third chance. I've saved a few lives in my profession; I'm not going to STOP with my own. You still don't understand? Read my story from start to finish like Terry advises. Take control, make a decision-READ AND STUDY THIS SITE LIKE I DID. As a result, because of THIS site, I am NOT "going under the knife" and dealing with incontinence, ED and all that other s**t that we all read about. You can beat this disease in more ways than one: KNOWLEDGE is one way.
Terry, as I said in my last post I did re-read Dave's original story. Once again I'm really pleased for Dave. You know I may be the man who had an unnecessary RRP, and to top it off I got left with a lump of prostate, which even if it turns out to be benign, is big enough to produce 0.67 PSA!
But we have to look at what Dave's experience means for all of us. What are we supposed to make of it?
The first lesson from Dave is the one Terry keeps hammering at, which is don't rush in to treatment. I may have done that and don't propose to do so again if my post op PSA tracks up.
But if we are not to rush into treatment we also have to do the other bit which is get all our facts straight to make the best choice we can.
So the facts in Dave's case as I see them are these. (1)Prostate cancer is endemic in his family ( Dad and 3 uncles). (2) Dave's PSA fluctuated between 3.9 and 5.2. (3) He had a biopsy which 2 pathologists found positive even though possibly insignificant (but remember the family history).(4) a third pathologist biopsied only areas of the prostate identified by a sophisticated scan and found no cancer. As we know, biopsies do not always find the cancer. We also know that scans are not good negative predictors.
The message for me is that (a) the original biopsy specimens need to be re-cut and looked at by completely different pathologists and (b) in Dave's position I would be closely monitoring PSA, not so much for total numbers as for velocity, doubling time and free PSA. (c) regular DRE's.
The prognosis looks really good for Dave and I am thrilled for him. But like I say, when someone posts their story we have to try to see what we can generalise from it.
One of the best messages in Davids story comes in the first part where he says he was on the phone on the way out of the urologists office scheduling appointments with surgeons.
This is a classic case of the fear of cancer and just hearing the word sends otherwise sane, rational people into a blind rush. In Daves case he did have a family history so it makes it more understandable, but...
When you are told, you MUST take a deep breath, step back and start to assess the options. PCa is not something that requires a rush to immediate action ( at least in the grat majority of cases, certainly not with a gleason of 5 or even 6.
Dave's post should be something every new patient should read before they blindly rush to do "something"
I couldn't agree more and can't stress enough how vitally important it is to THINK OVER YOUR OPTIONS and TAKE YOUR TIME.
In the UK here, and I've seen this happen in my own extended family, guys are told they have prostate cancer...and their immediate reaction is 'cut it out please'.
They are all too relieved to be offered an early date for radical surgery, not realising what the long term consequences can be.
It's a sore point with me that too many men are treated for prostate cancer by the urologist only, often only seeing an oncologist later on down the line when, and if, cancer has become rampant.
Surely EVERY patient diagnosed with PCa should be assessed by an oncologist as soon as the urologist has the positive biopsy?
Well, that's my early mrning moan outta the way.
It's freezing cold here on England's north east coast, but I don't care! 3 years ago I was told I had 2 or 3 years left to live...and the urologist was WRONG.
Happy Easter to you too Fred from very cold southern England (snowing at the moment).
I agree that David is a case for Active Surveiilance and not surgery (I think I should have stayed on AS longer too). But I distinguish between AS and Watchful Waiting. Active Surveillance for me in his case would obviously involve regular PSA screening to monitor volatility, regular DREs, and as a start (given his family history of Dad and 3 paternal brothers with PC), I would have that pathology of his sliced and re-sliced, coz 2 out of 3 said YES and 1 out of 3 said NO.
I would put a lot more value on the pathological evidence than on any fancy scans.
Happy Easter to you Ted and George(even though I am not a fellow limey, and to rub it in a bit, It is about 70F and bright and sunny with the flowers out in full force here in Alabama.
I would disagree with Ted on one point regarding Dave. I do not believe the biopsy needs to be checked again. Basically its two yes and two no. I understand your reticence to rely on the scan, but with the other data, it is as reliable as another pathologist taking another look. Regardless, the fact that there is such ambivalence regarding is it or isn't it positive, having it checked again would not shed any better light on the situation. The outcome at this time would be the same. Dave has lost confidence (rightly so)in the Dx of PCa. If it were me, I would follow an Active Surveillance routine with regular PSA and DRE. Make changes to lifestyle to inhibit growth of possible PCa and be thankful that he was spared going through treatment at this time.
Have a happy holiday-dont eat too many Easter eggs, Simmel cakes and hot cross buns.
Ted, Fred, Bill, George-I live in Southern California, not far from where the Beach Boys grew up. Its 8 am, I'm at the fire station, and its about 68 degrees with a high expected to be about 75. Thanks for your input. I hope my experience(s) have helped. Happy Easter. Dave
Your experience has been very instructive, David. So has Henk's recent input. I intend to go for one of those scans you talked about if my remaining bit (9.4ml) of prostate shows an upward trend of PSA growth. I shall certainly do that before any more biopsies or any more treatment.
Between me and the insurance company, it cost 20 grand (English pounds that is!) for the robot to cut out 50 grams of prostate and leave nearly 10 behind. That works out at about 2 grand a gram for the left over bit and a PSA of 0.67 last test! So caution is the watchword from now on for this 62 year old!
By the way, David, you live in a glorious part of the world. I took the family to San Diego, La Jolla and Palm Springs last year for a pre-op holiday. Enjoy!