at the suggestion of Kcon, I have started a new thread...
Hello all, I have now become a member of club I never wanted to apply to. Like all of you I have just been dx with PC. I am in fairly decent shape, and active in recreational sports, but I have spend the last couple of weeks beating myself up, blaming it on 56 years of bad nutrition, too much meat, fast foods and BBQ, not enough vegetables, lack of daily fruit intake, not enough personal concern about prostate care, vitamins, supplements, too much personal imposed stress about work and life, working with the notebook computer on my lap, etc.,etc, etc. I have been reading the posts on the forum and like all newly dx'ed I am torn as to which option to persue, surgery vs radiation. Like most I am concerned about my job and the amount of time off that surgery requires, not to mention the side effects of surgery, but I also don't want to second guess myself two years from now if I choose radiation and it returns, and be berated with the thoughts of why didn't I choose surgery. A few facts: my gleason score was 3+3, with 5% showing in only one of the 12 biopsy tests samples. Thanks to all on this forum, it has been encouraging to read the post. It have order two books "surviving prostate cancer"-dattoli and "Prostate and Cancer"- Sheldon Marks. I am currently reading Marks and waiting for the Dattoli to arrive.
further info. My PSA was 3.1 two years ago and this past month it jumped to 4.2 which prompted a second PSA to confirm (which came back at 4.6, different doctor, different lab), the above mentioned biopsy, and subsequent CAT and bone scan. The results of those will be revealed tomorrow at the Oncologist meeting. Hopefully there won't be any more depressing news.
Speaking of the Oncologist, who is also the surgeon if I decide to go that route, what are the questions I should be asking? Yes it does seem he would have a vested interest in slanting the discussion in one direction. The Urologist has already weighted in with his opinion..." because of your age and the possibility of it returning, you should go with surgery if it appears everything is contained within the prostate".
BTW, I am in the Connecticut/New York area. I am sure that all of you have gone through the gambit of emotions, but it feels as if my world has now been put on hold and I am struggling with how (or should I) to tell my college bound daughter. I feel she will probably take it harder than I have. Thanks for allowing me the opportunity to vent.
Let me start by saying I have great empathy and compassion especially for your final thought in your posting....telling your daughter. It sounds like she is the same age as my son, and I have a younger daughter, too. This past winter, when I told them about my PC, he was a HS senior and she was a HS freshman. I received my biopsy dx on January 12th (a day I’ll always remember), but that also happened to be the first day of the HS mid-term exam week. My wife & I quickly agreed not to tell them during exam week (so as to not disrupt their opportunity to do their best on the exams). Telling my kids, by the way, turned out to be much more difficult than telling my wife. To help you decide how you want to handle this, allow me to share my own thought process & experience at the time:
Once I had the confirmed diagnosis (same place you are now), I knew that I wanted to, and needed to, get inputs from others…which included friends, family, neighbors, co-workers; basically anyone who could offer help or input. Not that I went blabbing my situation around, but I was definitely seeking inputs. I figured (correctly) that this would lead to some lengthy phone conversations taken in private, which would have been atypical around our household…perhaps giving the astute observer a clue that something was amiss.
I thought that one way or the other word of my cancer would get out (beyond what I could control), and I wanted to be absolutely sure that my kids heard about it from me first. I didn’t want someone else saying to them, “Oh, I’m so sorry to hear about your father’s cancer” before I had a chance to tell them. I have been fairly active in the community—I coached 15 seasons of either soccer or basketball for the park district (split 8 & 7 seasons between my son & daughter’s teams), I was an active Cub Scout leader with my son, and did Indian Princesses with my daughter, and both kids continued to be very active in athletics—so I knew a lot of kids (and their parents) that are the same age as my kids. I thought of many possible paths that they could inadvertently hear about it, so we decided to tell them after exam week was over.
[As a sidebar, it turns out that the way I discovered the doctor who eventually operated on me was through the father of one of my son’s friends, who had coached our boys in basketball with me for 5 seasons…he is a medical malpractice attorney, and is very familiar with the best doctors in the Chicago area. He and I became good friends, but it was through our sons’ friendship that our friendship developed. I called him to inquire about doctors, but it turns out that my friend is most familiar with orthopedic doctors for his line of work. The next day his wife called me back to tell me about a former boss of hers who had been diagnosed with PC, had visited many local doctors while exploring his options, and had a fully successful surgery 2.5 years ago. She arranged an email introduction, which led to one of those lengthy phone calls taken in private. As I said, after my own wide search, I ended up choosing the same surgeon as he had selected. The one-on-one phone conversation I had with him was a strong influence; it included details of the temporary side effects he experienced and how long it took to put them in the rear view mirror. Everyone has side effects immediately after surgery; but, for the majority of younger men (like us), they are temporary.]
So, after exam week was over, I (we) told the kids.
Here’s the thing that I wished I had done different, and is the one piece of advice on this topic that I would pass on to you at this point for consideration. I wish that I had read a little more, talked to a few more people, found this web site and read the postings & experiences of others…generally educated myself further about PC, and specifically about my low-risk case of PC (much like yours) before talking to them. If I had done this, then I believe I could have handled that discussion with them better, and left them with more of a feeling of confidence on dealing with it versus a lingering concern or fear of the unknown.
Here’s a blunt bottom-line statement that I can say about your case with confidence: you are not going to die from PC. It’s true that many men will (30K in the US per year), but almost without exception, people with low-risk cases won’t. You will deal with it, and you will get better. I wish that I had understood this more clearly myself in my early stages of awareness, and had conveyed this much more clearly and with confidence to my kids in that discussion. Our discussion ended much more open-ended than it could have…I can see that much more clearly today.
I had done some Google searches on strings like “talking to your kids about cancer”, and found some good materials that I drew from…but to be quite honest in hindsight, most of these were talking about much more “serious” cases of cancer than my low-risk case (and yours). These were mostly directed at cancer situations where the outlook is much more uncertain, and much more bleak.
So, understanding that today is Aug 2nd, and your college-bound daughter probably leaves for school soon (my son leaves Aug 25th), I empathize with your situation. If I was in your situation, if you think you are going to have this conversation with her before she leaves, then you will need to work quickly to build your own knowledge and confidence that i) it is a low-risk case, and that ii) it is very treatable.
Let me stress, for complete clarity, that I would strongly not recommend that you try to pick a treatment solution quickly…in fact, the very opposite. Your indications (Gleason, PSA scores, biopsy results) are that your PC is not aggressive. Make sure that you become a knowledgeable and empowered patient. This will leave some challenge in your discussion with your daughter (if you choose to have that discussion in the next few weeks), because treatment will still be an unknown, but part of the discussion should be that low-risk cases are very treatable through various means & methods. (I’m sure you’ll be getting inputs on suggestions of where and what to look for in treatments, later…but as far as my inputs, first things first. I’d be glad to share more, later.)
best wishes…
BTW, the best and most overall balanced book (in my opinion) that I would recommend is not one of the ones you listed. I recommend "A Primer on Prostate Cancer: The Empowered Patient's Guide", by Strum and Pogliano.
Last edited by kcon; 08-02-2009 at 10:35 AM.
Reason: typo
Thanks for the input. As you mentioned it was much easier to tell my wife, but my daughter is completely different. It will probably be one of the most difficult things I have ever done. I am debating whether to tell her before leaving, she has so much on her plate now, entering a new college (transfering), adjusting to the new surrroundings, new more strenuous course load, but, like you, I don't want her to hear it from someone else.
I am in an almost identical situation, just a couple of months ahead of you. Kcon has great insight.
Until I armed myself with the knowledge of different treatment options, I was also scared...at times petrified...at the thought of having cancer. There is a lot of information available, but you will probably find yourself confused and worried until you finally decide on a modality.
You will find many guys telling you that their treatment was great and they had no problems or very few and would probably do it again if they had to choose. The right treatment is the one YOU are most comfortable with. I changed my mind 3 times until I decided on Proton Beam Therapy at Loma Linda. I will start treatment there in mid September. I will try and not second guess my decision. I suggest you look at ALL the different modalities and keep an open mind. Radiation was never on my list until I did more research.
I urge you to join as many of these forums as you can, and if you need the names of some of the 12 or 13 I monitor daily, I will be glad to share that with you.
You are not alone brother...and I pledge to help all those I can to pay it back. There are some great guys on these forums and they are willing to help answer your most intimate questions.
My son is a sophomore at the University of Arizona. I told him once I knew that my cancer is totally treatable, at an early stage, and not as serious as I thought. Learn as much as you can 56, I spent hours everyday for 6 weeks researching and reading everything I could find.
I am sleeping much better now...except for the nightly pee visits!!
56, you and I are much alike. I too was recently diagnosed (July 8) and I had to figure out how to tell my four children, the last two still in college. Telling my wife was easy because she's been right by my side all the way. The way I handled the children was to involve them in all the steps along this bumpy path. Everyone in the family knew I saw a urologist every year. They knew when my PSA flagged a biopsy. Keeping them in the loop helped when it came time to tell them the biopsy showed PC (Gleason 3+4). I guess what I am saying is to share all of this in a matter of fact way and not make it overly dramatic and serious. You can do that alone at night with prayer. Kcon made a very bold statement to you that should give you comfort.
Now is the time for you to read, study, research, and eventually come up with a plan of action.
peace,
john
Last edited by Red Nighthawk; 08-03-2009 at 03:53 AM.
for those of you who have gone the surgery route
1. how discomforting is the catheter?
2. How long is it typically in?
3. How long is the recovery?, How soon can you return to work?
4. How soon can to return to normal recreational activities, biking, skiing, yoga, etc
5. Are there any short/long term emotional effects. I am sure this is base on the person.
6. How soon do will I regain control of my urine flow?
7. How painful/discomforting is recovering in that first week? I've never gone through any type of surgery, not even a broken bone.
thanks.
You certainly have jumped right into some detailed specifics about surgery. I can, and will, gladly & openly share my experiences in response to each one of your numbered questions, below. At this very early stage, however, I would really hope that you are continuing to look across-the-board at all possible treatments. Recall in reply #2 to this thread, I wrote:
Let me stress, for complete clarity, that I would strongly not recommend that you try to pick a treatment solution quickly…in fact, the very opposite.
Why do I so strongly recommend this? For your own long-term piece of mind. All of the questions you asked in your posting (#7 in this thread) are all very short-term…days, weeks, or months. At 56, I would be sure to put those into proper perspective of the years & decades ahead of you. Right now, I am less than 4-months post-surgery, and already my responses to your questions are an increasingly distant memory to me. What’s more enduring (in my humble opinion) is one’s confidence and peace-of-mind for the long-term.
While this wasn’t my experience, I’ve read about others who “committed” quickly to one mode, then flip-flopped to another, and some flipped back or to yet another before finally going forward. You are not in a huge hurry, and you don’t need to put yourself through that. You have discovered your PC very early (5% in just one core sample!), and PC is a slow growing cancer (as evidenced in your “PSA velocity” from the data you provided). I encourage you to resist the natural feeling to act with urgency on treating your low-risk case immediately, and continue to study, ask, and learn.
So, understanding that your questions are part of the learning process…
Firstly, (and you will learn more about this when you come up the learning curve), there are two common types of surgery (a.k.a. radical prostatectomy): open surgery, and minimally invasive (a.k.a. laparoscopic) surgery. Further, there are two types of minimally invasive surgery: manual (usually simply called “laparoscopic”, although technically both minimally invasive methods are laparoscopic—using a laparoscope, which is a specialized endoscope (lights & camera), sort-of like the more commonly known arthroscope for knee surgery, which I’ve also had ), and robot-assisted (using a specialized robot model called “da Vinci”…Google: “da vinci robot”). Some of your questions depend on the type of surgery. My answers are primarily my personal experience with robotic-assisted surgery, and I have found these experiences to be mostly typical of other middle-aged, low-risk men undergoing the same procedure.
Quote:
Originally Posted by 56scared
1. how discomforting is the catheter?
2. How long is it typically in?
For minimally invasive surgery, it’s typically about a week (6 days for me), and for open surgery it’s about 2 weeks. How uncomfortable? That’s opinion, and is going to depend on the person & personality. You will find some threads on this board with men complaining about their suffered misery. I’ve described it to others as 6 days of “discomfort.” During those 6 days, I generally stuck pretty close to home, but did venture out for daily (very short) walks around the neighborhood, and went up to the high school to watch my daughter’s water polo game, but not a lot else. You tend to “shuffle around” gently & slowly during this period. I wore loose “sweat pants”; nobody knew I had a catheter unless I told them.
Quote:
Originally Posted by 56scared
3. How long is the recovery?, How soon can you return to work?
6. How soon do will I regain control of my urine flow?
I combined 3. and 6. because I think they are closely related...
I took a medical leave of absence (FMLA) for 3 weeks & 2 days; the “2 days” was simply because my surgery was on a Thursday (my doctor had approved a leave up to 4 weeks for the robotic-assisted surgery recovery). I was very ready to go back, and had been doing some computer-work and phone calls from home during my leave. It was described to me that the 4-week doctor’s approval period after robotic surgery is mainly for “social” concerns…it allows the typical patient to get his pee flow under some acceptable level of control, and learn how to use absorbency pads, before going back to work…otherwise, 4 weeks isn’t really required for the physical recovery from surgery.
(I had considered “open” surgery and discussed this with one doctor. The recovery is different. I’ve heard it compared to a C-Section in terms of the recovery cycle. The doctor I talked to recommended 6-week medical leave for "open" surgery.)
Almost without exception, there is a period of incontinence after surgery which requires one to wear pads, and it takes a little adjustment to get used to them. The control of flow gets a little better day-by-day (note that day-by-day can seem very slow at the time when you are living minute-by-minute). When I returned to work, I had about 5 individual days where I changed pads once during the day at work, otherwise I used only one pad while at work (although I changed it as soon as I got home). My very last pad was 11 weeks after surgery; I hadn’t used one in several days at that point, but I was going boating on Lake Michigan on a Saturday night, and used it for my own personal “confidence.” I was buying pads packaged in 52-per; in all I bought 4 packages, but I only used about 10-20 in my 4th package—so in all I used about 170 in 11 weeks on a constantly decreasing trend.
My doctor publishes a table of time to get to pad-free based on the experiences in his practice for patients undergoing da Vinci surgery. You can find that table at this link: http://www.healthboards.com/boards/showpost.php?p=3980637&postcount=23
My experience at 11-weeks puts me a little better than the average from my doctor's practice. You will read on this board or elsewhere about others who have had bad experiences; generally, someone "youngish" like us and in relatively good physical shape should not have ongoing problems. I also think that my exercising contributed favorably…see comments below to your question 4.
Quote:
Originally Posted by 56scared
4. How soon can to return to normal recreational activities, biking, skiing, yoga, etc?
I belong to our local YMCA, and in recent years I had been working out there about 3-days per week; mostly, doing the elliptical cross-trainer, also some weights and some core work (floor exercises, like sit-ups, etc.). I made my first trip back to the Y 11-days after surgery and did 2-miles on the elliptical machine…slow pace. I very slowly built that up by going a little faster, and a little further, until I was getting regular cardio workouts by about 6-weeks. My doctor gave me the OK to start doing abdominal work after 6-weeks, so in week-7 I hired a trainer (for a handful of 30-minute sessions) that I had worked with previously for core work, told him about my surgery (and my doctor’s clearance) and asked him to give me “beginner” core exercises. I talked to him about my Kegel exercises (you’ll need to learn about these...Google: prostate cancer kegel), and so we worked Kegels into each exercise. I write down each exercise he teaches me, so that I can do them later on my own. I am convinced that these have helped me be “leak free” more quickly. At this point, I am back to my regular work-out routine…although I am going more frequently. I did 5 miles of elliptical & 30 mins of core work Saturday, and another 5 miles elliptical & 20 mins weights on Sunday (yesterday). During the week, I go a couple days per week before work. Again, I am less than 4-months post-surgery.
Quote:
Originally Posted by 56scared
5. Are there any short/long term emotional effects. I am sure this is base on the person.
Not sure how to answer this. I think that getting a cancer diagnosis will change something or another emotionally about anybody. For me (and certainly this is typical), there has been a lot of emotions since January 12th, 2009 (my dx day). It takes a while for some positives to start happening, but at less than 4-months post-surgery, I feel that I am very much “getting on with my life” with a very positive outlook. I feel very much “cured”, the worst is behind me and things will only continue to improve. I will have regular PSA testing to make sure that nothing was “left behind”, but based on my low-risk case and my favorable pathology report after surgery I have little to be concerned about. When I say “things will only continue to improve”, this partly has to do with how I felt about my own personal choice for surgery as a younger (middle-aged) low-risk case. For me personally, I wanted to have the surgery and get the worst part behind me and work toward constant improvement, versus other treatment modes (that can be equally as effective in “curing PC”) which don’t have much initial physical effect on you at the time of treatment, but in later years can lead to secondary cancers, brittle pelvis issues, rectal problems, and/or others. I think that this part of the choice has a lot to do with one’s individual personality, and everyone is different. For me, all other things being equal, if I had been a decade older, surgery or radiation would have weighed more equally. If I had been two decades older, radiation would have probably weighed-in more heavily than surgery.
Quote:
Originally Posted by 56scared
7. How painful/discomforting is recovering in that first week? I've never gone through any type of surgery, not even a broken bone.
thanks.
Some comments already made, above. One of the significant differences in open and laparoscopic surgeries is the post-surgical pain felt by the patient. (Other key differences include the blood loss, what the surgeon can see, and what the surgeon can feel.) My personal experience was that there was very little pain from the surgery itself. Here’s what I posted on this board three days after my surgery:
Was in awful pain Thursday night in the hospital...but the pain was in my back (un-repaired herniated L5/S1 disk) from lying on my back for hours. Got some meds middle of the night and was ok; and fine since then because I've been moving around. Otherwise, not much abdominal pain at all.
http://www.healthboards.com/boards/showpost.php?p=3953489&postcount=38
When I went home from the hospital the day after surgery, I was not prescribed any pain meds, nor did I need any. I don’t even remember taking any over-the-counter Ibuprofen or anything. I understand that this is fairly common for laparoscopic surgery.
OK, I gotta get back to work (I'm an engineer by degree, now a technical operations manager). Typed this out mostly during my lunch.
Continue to study, ask, learn.
best wishes...
Last edited by kcon; 08-03-2009 at 01:56 PM.
Reason: typo
You're going through whats probably the most difficult phase, the route to treatment and hopefully cure. I know how overwhelming and frightening everything seems right now. I had almost identical clinical characteristics to yours 8 years ago and was devastated when first learning of the Dx.
You have what sounds like the most treatable, cureable, early stage, localized P.C. which can be cured by either surgery ( which I opted for and was cured) or the latest state of the art radiation. You should certainly look into Proton Beam if you're considering radiation, as its the newest and most promising mode of external beam radiation with the least side effects.
You should also stop beating yourself up about how your past lifestyle might in any way have caused it. To my knowledge there is no credible scientific evidence that Prostate Cancer is either a life style disease or that it is caused by poor diet lack of exercise, etc as is true for lung cancer, high blood pressure, diabetes, and heart disease which do corelate with lifestyle and poor health habits. While there may be some genetic component, yet to be proven, Prostate Cancer is believed to be a degenerative condition of aging beginning in a clinically insignificant state in middle age and gradually progressing, at different rates as men age. While it can occur in an aggressive state most autopsies of men never diagnosed with P.C. and who die of other causes reveal prostate cancer in some degree. Some researchers speculate there may be an environmental component but that also remains to be identified and proven.
The bottom line is that you didn't cause your prostate cancer, you couldn't have prevented it with what's known today and your best shot at curing it lies with evidence based treatment options performed by the best specialists in the finest institutions you can access. Avoid the quirky, unproven, non -mainstream treatments.
Best of luck, Bob
I too would like to welcome you to this club we all wanted to avoid! By the way, your name isn't Chris, is it? At the least you can claim to be in the trendy set in Connecticut.
I've read the exchanges through shs50s 9th post on your thread, and I'll add some comments in green to an excerpt of your first post of 8/2, below. Jim
Quote:
Originally Posted by 56scared
.... I am in fairly decent shape, and active in recreational sports, but I have spend the last couple of weeks beating myself up, blaming it on 56 years of bad nutrition, too much meat, fast foods and BBQ, not enough vegetables, lack of daily fruit intake, not enough personal concern about prostate care, vitamins, supplements, too much personal imposed stress about work and life, working with the notebook computer on my lap, etc.,etc, etc.
I would like to offer a view different from what Bob (shs50) gave you in the lifestyle and nutrition areas. I too think there's no point in beating yourself up for past choices, though if you are a superhuman being, I suppose that then you would deserve it. But I've become personally convinced that our diet and nutritional choices, including supplements, and also including exercise, stress, and even medication choices, do play a substantial role in whether we get prostate cancer and, if we do, how serious it is.
Bob said he was unaware of credible scientific evidence that prostate cancer is a lifestyle disease, and he put emphasis on the lack of causation of prostate cancer by such influences. I agree in part, certainly regarding primary causation such as smoking and lung cancer where there is no such link with prostate cancer, but there is an abundance of medical research that links such influences to prostate cancer as likely contributing factors and as influences on patients who have the disease. To me, with no enrolled medical education but a fair amount of scientific education and association, there is almost no conclusive evidence for such factors (the mild drug finasteride being one exception), but there is an abundance of fairly to strongly persuasive evidence, with a great deal of ongoing research. (If you are a glutton for information overload, you can check out the original source research yourself: go to www.pubmed.gov, a site we can use on this board because it is Government sponsored, and try search strings like " prostate cancer AND lycopene ", or "prostate cancer AND exercise ", for example (without the quotation marks).)
To me, the bottom line is that we will very likely do better if we make some lifestyle efforts. On the other hand, with a case like yours that appears to be very low risk, you can probably get away with doing little, if you want to take that chance. If you are interested in lifestyle tactics as support (but not the main strategy), I started a thread on 3/6/2008, "Nutrition & lifestyle tactics - books, resources and a quick summary," that provides key nuggets of information and leads. To get a quick look at how dynamic this area is, check today's thread on selenium, which now looks like something to avoid, for the time being.
I have been reading the posts on the forum and like all newly dx'ed I am torn as to which option to persue, surgery vs radiation.
kcon has repeated his advice not to commit yourself too early. For one thing, you do not appear to be giving any thought to Active Surveillance (AS), despite having a case that appears to be well suited for that approach. Even if you later need to have treatment, or if you decide you would rather have it even while you are doing well, you will have gained that much time with the same quality of life you enjoy today, and with no burden of treatment except for what goes into careful monitoring (mainly periodic PSA tests, DREs, and biopsies at the first and second year as recommended by most programs, with spread out biopsies after that). You will also have gained time during which therapies will almost certainly have improved or matured to the point of general acceptance. If you are interested, there are several threads on AS, including "Active surveillance - a sound option for truly low risk men", started 1/5/2008.
Did the doctor mention that approach? I'm curious, as new (April 2009) guidelines published by the American Urological Association urge doctors to include Active Surveillance in their discussions of options with low risk patients. On this board there is strong evidence that some doctors are not yet adopting the AUA's guidance on a number of key points, adding unnecessary burdens on their patients and cost. (The source document is the AUA's "Prostate-Specific Antigen Best Practice Statement".)
... but I also don't want to second guess myself two years from now if I choose radiation and it returns, and be berated with the thoughts of why didn't I choose surgery.
A decade or so ago that concern would have been valid - well supported by medical research. That's no longer the case! Competent radiation delivery these days is virtually as likely to cure localized prostate cancer as competent surgery - extremely likely. The main difference is that radiation doctors now know that higher doses are needed to assure cure, and they now know how to deliver those doses safely. The real question for truly low-risk men is not whether a therapy is going to cure the cancer, it is whether curative therapy is necessary or desirable at all! (It's better to use both words, as "necessary" and "desirable" are not the same thing - food for thought.)
A few facts: my gleason score was 3+3, with 5% showing in only one of the 12 biopsy tests samples.
You're making me most envious.
Thanks to all on this forum, it has been encouraging to read the post. It have order two books "surviving prostate cancer"-dattoli and "Prostate and Cancer"- Sheldon Marks. I am currently reading Marks and waiting for the Dattoli to arrive.
further info.
Those are both fine books, but I'm with kcon in urging you to get the Primer as well.
My PSA was 3.1 two years ago and this past month it jumped to 4.2 which prompted a second PSA to confirm (which came back at 4.6, different doctor, different lab), the above mentioned biopsy,
You probably do not realize it yet, but those numbers make it very likely that your PSA is not currently rising at a velocity of more than 2.0 per year. That is highly significant, per rapidly influential findings by teams led by Dr. Anthony D'Amico, who published their research in 2004 and 2005. The bottom line: favorable PSA velocity of 2.0 or lower means that risk of recurrence is lower than would otherwise be indicated by PSA level, Gleason score, stage, number of cores positive, etc.
and subsequent CAT and bone scan. The results of those will be revealed tomorrow at the Oncologist meeting.
The AUA is staking its reputation on the view that such results will extremely rarely be positive in cases like yours.
Hopefully there won't be any more depressing news.
Speaking of the Oncologist, who is also the surgeon if I decide to go that route, what are the questions I should be asking?
You might be interested in the latest edition of the national conferences on prostate cancer that are presented by leading experts and are directed mainly toward patients. It will be held for two days at the LAX Marriott in Los Angeles in mid-September. Details have been published by the Prostate Cancer Research Institute and by Us Too International, the main prostate cancer support organization.
Yes it does seem he would have a vested interest in slanting the discussion in one direction. The Urologist has already weighted in with his opinion..." because of your age and the possibility of it returning, you should go with surgery if it appears everything is contained within the prostate".
I'm convinced that age comment is now bogus for radiation. It used to be valid. Surgery is also a fine option, just not clearly better than radiation. Research backs that up.
BTW, I am in the Connecticut/New York area. I am sure that all of you have gone through the gambit of emotions, but it feels as if my world has now been put on hold and I am struggling with how (or should I) to tell my college bound daughter. I feel she will probably take it harder than I have. Thanks for allowing me the opportunity to vent.
kcon made some excellent comments about this. Prostate cancer scares all of us, but it ranges in seriousness from the equivalent of a case of dandruff to the equivalent of a case of aggressive pancreatic cancer, as Dr. Charles Myers, MD, put it. (He's a very savvy, expert medical oncologist specializing in prostate cancer.) We now know fairly well how to determine the truly low-risk cases, though we still need to put such cancers on probation for two to three years before gaining high confidence that they are insignificant and highly unlikely to ever cause trouble or need treatment throughout a patient's life.
Good luck to you in sorting all this out.
Take care,
Jim
Last edited by IADT3since2000; 08-03-2009 at 08:07 PM.
Reason: Spelling, right after posting.
Just and update, I finally got up the nerve to speak with my daughter. It's amazing how resilient, knowledgeable, and understanding today's youth are. Maybe it's from growing up with all of the illnesses around them, in news, on the radio, on tv, or the fact that they all have one or two friends who are dealing with a family health crises. As she said, "Dad feel grateful that it was caught early and curable, many are not as fortunate as we are. I know you'll be ok." How did I get so lucky, to have a daughter like her.
I also met with the nuclear oncologist today. Kcon, that is what prompted most of the surgery questions. Of course he made a very substantial case for robotic surgery. My CT scan and Bone scan were all negative, pretty much what I was expecting (and hoping for) from the books, articles and posts I have been able to read. Though he mentioned active surveillance as an option, it was not given a serious amount of conversation time. There a few things that I do know about my current personal makeup: The thought of Active Surveillance would seem to be right up my alley, I would love to spend 6 months to year, reading and studying, but waiting scares me a bit. I have always been a somewhat of a procrastinator, and I would be afraid that I would miss my window of opportunity, and test right after it had spread to other areas.
I don't think I have the patience, nor the required time allocation, to go through as many treatments as proton seems to take, though I am trying to keep and open mind.
Though I have tried to be a little easier on myself, (thanks for all the encouragement) about past lifestyle habits, I don't think I will ever feel that proper nutrition, vegetables, fruit, water, balanced diet, antioxidants, controlled weight, less stress, etc, don't play an important preventative role.
Just and update, I finally got up the nerve to speak with my daughter. It's amazing how resilient, knowledgeable, and understanding today's youth are. ... As she said, "Dad feel grateful that it was caught early and curable, many are not as fortunate as we are. I know you'll be ok." How did I get so lucky, to have a daughter like her.
Very lucky...you should feel proud. I predict that you will be getting & giving plenty of hugs in the next few weeks...
Simply having this conversation with her (based on comparison to my personal experience) is a significant step in unloading one of the heavy weights that you feel has been dumped on your shoulders.
Congratulations on taking that huge step with your daughter! Kcon's penetrating insight about unloading one of the heavy weights reminded me of another reason this kind of action is so important: it's an important affirmation that we are the same worthy, worthwhile, powerful, potentially joyful children of God that we were before the diagnosis; we are not diminished, dismissable, insignificant, write-offs or castaways! We matter!! We still matter after diagnosis!!!
I'll add some thoughts in green.
Quote:
Originally Posted by 56scared
I also met with the nuclear oncologist today. ... Though he mentioned active surveillance as an option, it was not given a serious amount of conversation time.
It's a mark in his favor that he brought it up, and it's not surprising that he did not spend much time on it. I can think of two reasons off the top of my head. The first is that, at least in dealing with prostate cancer, most doctors are not that savvy beyond the bounds of their own specialties. I became aware of that slowly, and when the realization finally crystalized and sunk in, I was surprised. After all, docs are really smart, very-well educated professionals, and they are supposed to keep up with their fields.
But consider the situation of the average general urologist: he treats all kinds of urological diseases, not just cancer, in men and women of all age ranges, and perhaps in children as well. When it comes to cancer (and other diseases), he has to cover several stages. With prostate cancer, there is such a wide range of aggressiveness and special circumstances. All the while there are new technologies and medications that are coming on stream for all these diseases and kinds of patients. Becoming expert in robotic or laparoscopic surgery for prostate cancer alone would be a huge commitment.
The other huge problem is that more there is an awesome flow of new medical research being published on prostate cancer, and the volume is increasing. I just checked for 2009, with this string on www.pubmed.gov, " prostate cancer AND 2008 [dp] " and got exactly 6,500 hits! That's nearly 18 new papers related to prostate cancer published each day, 24/365! Obviously no human being can keep up with that.
These great forces cause doctors to become very specialized or to cover many areas rather lightly.
There a few things that I do know about my current personal makeup: The thought of Active Surveillance would seem to be right up my alley, I would love to spend 6 months to year, reading and studying, but waiting scares me a bit.
This is one disease where there is a great premium for taking your time if you are a man with truly low-risk case characteristics, and, fortunately, research has now pretty well nailed down what those characteristics are - well enough to make active surveillance a highly effective approach. It's a rare man and loved ones who do not go through a period of near panic and low spirits after the diagnosis, but recovering your cool is vitally important. Think of Gen. Israel Putnam near your area in the Revolutionary War as he rallied his green, scared troops with the cry, "Don't fire til you see the whites of their eyes!" He was referring of course to the advancing ranks of well-armed, well-trained, thoroughly professional and experienced British Redcoats - an unnerving site indeed! Or think of the savvy carpenter who advises his apprentice, "Measure twice so you only need to cut once." Think of the appendix; most of us still have one, and if it ruptures it can kill us within days. Yet we are so confident in our ability to respond effectively to any appendicitis that we hardly give a second thought to living with this potential short-fused time bomb! Take time to appreciate the fact that you already know how to live with prostate cancer; it's so slow growing in most cases, that many of us have had it for years if not a decade or more before we are diagnosed. Of course, the rub is that knowing we have the cancer takes some getting used to.
I have always been a somewhat of a procrastinator, and I would be afraid that I would miss my window of opportunity, and test right after it had spread to other areas.
You have put your finger right on the key question: are our active surveillance techniques good enough to catch cases that really are or that turn aggressive while there is still a window not only for an excellent shot at a cure, but also at a decently light burden from side effects. Many men, including some participants on this board with low-risk cases, had to make that call with their doctors when there was little or no solid medical research evidence to guide them. And a great majority even up to this day, without results available in the past, or not aware of them in the present, have chosen to bear the risks and burden of treatment rather than chose Active Surveillance.
That was true into the early years of this decade, but how it has changed! Back in the mid-nineties, leaders (including prominent surgeons) at a number of leading prostate cancer treating centers, became increasingly disturbed that PSA screening was resulting in diagnosis and major treatment for many men with very low-risk disease characteristics, the kinds of cases that were similar in characteristics to men who lived to ripe old ages and were never bothered by prostate cancer, but whose insignificant prostate cancer was found during autopsies. Those centers began launching pioneering active surveillance programs, often referred to as "watchful waiting" programs because that was the terminology used for a seemingly similar but far less attentive approach at the time. Giants in prostate cancer treatment were associated with these efforts: Drs. Patrick Walsh, H. Ballentine Carter, Allan Partin, and pathologist Jonathan Epstein at Johns Hopkins; Dr. Peter Scardino at Memorial Sloan Kettering in New York; Dr. Babaian at MD Anderson in Texas; Dr. Peter Carroll at the UCSF in California; and internationally, Dr. Fritz Schröder in the Netherlands; and arguably the dean of all active surveillance, Dr. Laurence Klotz at the U. of Toronto, Sunnybrook. No doubt I'm missing some others who deserve to be in such a list.
For years brave men entered the programs and were carefully monitored, typically with periodic PSAs and DREs (probably at least every six months), and biopsies at least at the one and two year points, with perhaps more spread out biopsies after that. The first major publication of results I'm aware of was in 2002, by the Toronto team led by Dr. Klotz, whose program had been initiated late in 1995. Soon Johns Hopkins followed with its published results, and then Memorial Sloan Kettering, the Netherlands, MD Anderson, and UCSF. With much of the urological and oncological world watching intently, these programs published updates and special detailed looks at their programs.
They achieved - drum roll here: success! Generally, it appears that about 60% or a slightly higher proportion of patients in these programs does well long-term. In other words, they are able to stay in the programs for many years without needing treatment, until they either die from other causes or remain indefinitely as of the latest review date. While Toronto has one of the largest and longest running programs, a substantial number of these programs now have large numbers of men who with many years of successful followup. As you can see, those patients at Toronto who started in 1995 and have been successful now have followup of at least thirteen years with no sign of the disease turning aggressive. Several of the programs published a joint paper about their combined results, but the followup lengths average patients with both long and short followup, and the average is therefor fairly short, especially as these programs are growing in popularity.
The second key aspect is the degree of treatment success for the third or so of patients who turn out to need treatment. That's the group you and so many of us get concerned about, and that's where, to me, the success is again awesome! In essence, it is clear that the curative window is preserved, with numbers very close to numbers achieved by patients who elect immediate therapy. Moreover the side effect profiles look very good.
Here's a look at an excerpt from an abstract of just one of the research papers that reviews results for patients remaining on AS and for those who turned out to need treatment as time went on. I'll put it in blue, and insert my comments in brackets in green:
J Urol. 2009 Apr;181(4):1635-41; discussion 1641. Epub 2009 Feb 23. A multi-institutional evaluation of active surveillance for low risk prostate cancer. Eggener SE, Mueller A, Berglund RK, Ayyathurai R, Soloway C, Soloway MS, Abouassaly R, Klein EA, Jones SJ, Zappavigna C, Goldenberg L, Scardino PT, Eastham JA, Guillonneau B. [There are several top guns here, including two from Memorial Sloan Kettering - Dr. Peter Scardino, who is a top flight surgeon and the author of a popular book on treatments, and Dr. Guilloneau, who is perhaps the world's top robotic and laparoscopic prostate cancer surgeon, having pioneered the robotic procedure; Dr. Eric Klein from the Cleveland Clinic is another formidable expert, as are several of the others.
PURPOSE: For select men with low risk prostate cancer active surveillance is more often being considered a management strategy. In a multicenter [it looks like MSK, the Cleveland Clinic, and at least one Canadian center were involved] retrospective study we evaluated the actuarial rates and predictors of remaining on active surveillance, the incidence of cancer progression and the pathological findings of delayed radical prostatectomy. MATERIALS AND METHODS: ... 262 men from 4 institutions met the inclusion criteria ... Active surveillance started on the date of the second biopsy. That means they are using a conservative clock for AS success - counting time only from the second biopsy rather than from diagnosis; in my mind, that would make their true results since diagnosis be even better]... RESULTS: With a median followup of 29 months 43 patients ultimately received active treatment. The 2 and 5-year probabilities of remaining on active surveillance were 91% and 75%, respectively. [I find that five year result, in a word, to be awesome! Just think - three fourths of the patients being able to coast on active surveillance for more than five years (remember the conservative way they count time)! Results from Toronto, with much longer follow-up recently, lower that percentage to ~60%, but that too to me is awesome! ... Skeletal metastases developed in 1 patient 38 months after starting active surveillance. [That's the kind of result we patient's worry about, but think of the odds: only 1 patient out of 262 - less than half of a percent - with bone mets at the three year point. Also, if those mets were fewer than five, which seems likely to me based on the other characteristics, recent research indicates they can be effectively eliminated with unlikely additional mets. Finally, I doubt that results for immediate treatment would be noticeably better. Of the 43 patients undergoing delayed treatment 41 (95%) are without disease progression at a median of 23 months following treatment. [That 95% has to be very close to results for patients getting immediate treatment at a comparable time in followup - about 23 months after treatment plus, probably - based on other research, about two or three years after the start of AS before needing treatment, so roughly four to five years of follow-up, on average.] CONCLUSIONS: With a median followup of 29 months active surveillance for select patients appears to be safe and associated with a low risk of systemic progression. ...
Here's another report, this time from Johns Hopkins, and it does not appear to overlap with the other study based on the authors lists. I'll put it in brown, with my comments in green.
Delayed versus immediate surgical intervention and prostate cancer outcome. Warlick C, Trock BJ, Landis P, Epstein JI, Carter HB. J Natl Cancer Inst. 2006 Mar 1;98(5):355-7.
For prostate cancer patients with small, lower-grade tumors, expectant management with delayed surgical intervention (active surveillance) is a rarely used therapeutic option because the opportunity for cure may be lost. [Actually, thanks to efforts by this team and others, it is not such a rare option anymore, though numbers I've seen indicate that only around 10% of eligible men are chosing it. We compared outcomes of 38 patients with small, lower-grade prostate cancer in an expectant management [That's the early Johns Hopkins term for Active Surveillance.] program who underwent delayed surgical intervention at a median of 26.5 months [ranging for 95% of the patients from 17 to 32 months, or a total range for all patients from 12 to 73 months after diagnosis] ... with 150 similar patients who underwent immediate surgical intervention at a median of 3.0 months [95% treated 2 to 4 months, with the total range from 1 to 9 months after diagnosis).... Noncurable cancer was defined as adverse pathology associated with a less than 75% chance of remaining disease-free for 10 years after surgery. Noncurable cancer was diagnosed in nine (23%) of the 38 patients in the delayed intervention cohort and in 24 (16%) of the 150 men in the immediate intervention group. After adjusting for age and prostate-specific antigen (PSA) density (i.e., PSA value divided by prostate volume) in a Mantel-Haenszel analysis, the risks of noncurable cancer associated with delayed and immediate intervention did not differ statistically significantly Get ready for the exact statistical language in the abstract: (relative risk = 1.08, 95% CI = 0.55 to 2.12; P = .819, two-sided Cochran-Mantel-Haenszel statistic) [meaning an 8% greater chance of non-curable cancer, with virtual certainty that even that result was due to chance.] . ... Thus, delayed prostate cancer surgery for patients with small, lower-grade prostate cancers does not appear to compromise curability.
What's the downside to the research? As of 2009, I'm sure that everyone would like to see longer followup, though what we have already is substantial and encouraging. Though the trends look clear and stable, there is still some risk. (On the other hand, there is risk with immediate therapy too. That leads me to think that the differences between the risks has to be minimal, and I suspect that's why the heavy hitters are staking their reputations in support of AS.)
Also, the degree to which surgery gets ruled out as an option because of minor but clear capsule penetration is not clear in the research, at least to me. That's not a big deal for those of us who are comfortable with radiation (and perhaps hormonal therapy), because radiation is highly effective in such cases, as research has now pretty much proven. On the other hand (the good other hand), it is quite clear that many patients who do need treatment have been able to elect surgery at these centers of excellence in prostate cancer treatment, as we see in the above multicenter paper; it appears that all of the patients decided on surgery, perhaps that was part of the AS program plan in case the cancer was found to be aggressive.
Also, there is some concern about the degree to which an opportunity is lost for nerve sparing surgery. That concern is expressed, for instance in one of the recent guideline documents published by the American Urological Association. They are not saying that the opportunity is often lost, it's just that there has not been solid research on that point yet to my knowledge.
...
In an earlier post you were concerned about this as a risk factor:
"working with the notebook computer on my lap". I've followed prostate cancer risk factors fairly closely, but I've never heard of electromagnetic energy being suspected as a cause of prostate cancer. I think there is a legitimate concern about a possible link between extensive cell phone use and brain cancer, especially because it is now clear that phone manufacturers have tried to discourage and cover up adverse results, but I think that kind of connection is unlikely for prostate cancer. For one thing, the prostate is located well within the body, at some distance from lap-top exposure. Do you know of such research? If so, I would sure like to learn about it.
finally telling my daughter took so much off my shoulders that it allowed me relax a bit, maybe a little too much. I took a few days and got away from the reading and searching the web for info, and constantly thinking about my plight. I must say it was very nice to get to a "free" mind set, back to yoga, back to bike riding, back to things I enjoy doing, but now it seems to be time to get on with deciding which direction to go with my treatment. Thanks iADT for the extremely informative post. Hopefully I can be that informed before choosing an option.
Its amazing how easy it was to change my diet and nutrition selections now that " the cow is out of the barn". Haven't touch fast food, chocolate, cakes, cookies, sweets,etc, I have been eating more vegetables, fruits, water, pomegranate juice, etc since being dx'd. Don't know if it helps any, but I certainly feel better.
Hi again, and I'll insert some thoughts in green. Jim
Quote:
Originally Posted by 56scared
finally telling my daughter took so much off my shoulders that it allowed me relax a bit, maybe a little too much.
I doubt that relaxing too much is possible. It's wonderful that you were able to do that. After my own diagnosis, my wife and I wondered if we would ever experience another joyful day. It was around Christmas time, and we were soon visiting with our sons on vacation in California, having fine parts of the day. It took a few weeks or perhaps a month before we really had a solidly good day. You are on a great track in this important area!
I took a few days and got away from the reading and searching the web for info, and constantly thinking about my plight. I must say it was very nice to get to a "free" mind set, back to yoga, back to bike riding, back to things I enjoy doing,
It's great to read that! For months I became nearly obsessed with getting information to deal with my challenging case, to the point that my wife worked with me to set aside "cancer free days". That helped, but it looks like you are already there.
but now it seems to be time to get on with deciding which direction to go with my treatment.
You've got some time. It's not something you can put off, but you can be involved in other things so that it does not dominate your life.
Thanks iADT for the extremely informative post.
You're welcome. Glad to help!
Hopefully I can be that informed before choosing an option.
Its amazing how easy it was to change my diet and nutrition selections now that " the cow is out of the barn".
Many of us have experienced that powerful motivation.
Haven't touch fast food, chocolate, cakes, cookies, sweets,etc, I have been eating more vegetables, fruits, water, pomegranate juice, etc since being dx'd. Don't know if it helps any, but I certainly feel better.
Actually, dark chocolate appears to be beneficial; it is a terrific antioxidant. Most of us won't care for it as much as for milk chocolate, but I enjoy a square of dark chocolate at noon with a glass of red wine and repeat that at dinner. Provided you are okay with the alcohol, both appear to be beneficial per research, and both are certainly enjoyable. The higher the cocoa content in the dark chocolate the better, but, for me, the dark chocolate is good up through around 70% to 75% cocoa; above that and it approaches a sort of waxy soft cardboard in taste and texture. I used to go for 100% cocoa, but now I compromise for the enjoyment.
Alcoholic beverages are not good for many cancers, but prostate cancer is not one of those. For men, one or two drinks a day appears to be fine, even apparently beneficial in some regards, especially if red wine. More than that puts an unfavorable load on the liver, so I rarely go beyond two drinks per day.
I echo Jim's comments on dark chocolate and red wine. Both of these items were in my surgeon's guideline for healthy eating.
You may want to inquire with your doc about bike riding. My personal journey started with a bout of severe prostatitis (late-June last year), but at the time my urologist told me to NOT ride a bike. [I had just gotten a new bike for Father's Day, just a few weeks earlier. Bummer!]
If I had been diagnosed with PC but had not experienced the bout with prostatitis, I'm not sure if he would have also told me not to ride...this would be more similar to your situation. I can't say that I've specifically read about untreated PC patients being advised not to ride. I'm simply suggesting, based on my similar but not identical experience, that you might want to inquire about this.
well, my daughter is off to college, now it's time to turn my attention on my own issues. After reading, viewing numerous posts and great information from this site, talking to acquaintances who have gone through PC treatments, I am all but sure that surgery will be my choice. As mentioned before, I was hoping to be comfortable with the surveillance option, but it doesn't seem to be a treatment that would sit well with me. My question is about the surgeon. He seems to be fairly well known, but how can I be sure of his expertise? I was given a list of patients to call for references, but I'm sure those were only the successful ones. After all, no one puts problem patients on a referral list. How do I go about finding an excellent second surgeon? I am located in the northern suburb region of New York city, not far from Connecticut. Has anyone had any experience traveling far for the surgery? If I do travel for the surgery, is it protocol to go there or locally for followups?
It sounds like you were able to (for the most part) enjoy the rest of the summer with your daughter, and I remain very happy to recall the pride in your message posted here after telling her about your cancer. I also dropped off my college incoming-freshman son at school this week. It was very difficult to release him from a hug, then turn and walk out of his dorm room for the long ride home. (sniff)
How to pick a surgeon...you don't ask any easy questions. There's no one, single right way, but I can share my experience and thoughts.
Firstly, look for experience. You don't need to be one of the first patients. There is a learning curve, as you might expect with just about any profession. I read one study about the daVinci learning curve which showed that results pretty much leveled out after about 90 or 100 operations, but you can easily enough find surgeons who have done many hundreds, and plenty over 1000.
Talking to people in the area ended up being one of the best sources of info. You can build a knowledge base of names, and associate them with the experiences of others, by asking a lot of questions when you talk to people. Who did you have do your surgery? Who else did you consider? Why did you go with him? Why not with the others? etc. You can/should call the references and ask these questions. Consider going to a local Us TOO meeting (PC support group; use Google to find) and talking to others there. I think generally you won't find too many people who don't like who they picked, but you will gather info along the way.
After I talked to several people locally, I found someone I felt I could trust who had been through it. I talked to him about his "short list", Googled the names and read as much as I could find about them, made appointments, and then in the end I went with my gut on the one the felt the most right.
Nearby NYC (nearby to you) has Sloan-Kettering-Memorial, which appears to be well known for work in PC. I don't know much about it, but have read of their prominance; I can't name a specific doctor, but perhaps others on this board can comment about that. You should consider getting an appointment there just to see what it's like and to expand your base of knowledge.
I live in a suburb NW of Chicago, and had my surgery done at Univ of Chicago on the south side of town...I'd estimate it's about 45 miles away. Not out of town, but not my neighborhood doc either. If all continues to go well, there's not really all that much face-to-face follow-up. I communicate with his office via email on some of the small follow-up details.
Hope this helps. In the end, I realized that (once again) there is no single best choice which would be head-and-shoulders above all others, and that I would choose a doc that I felt comfortable with overall.
HI 56,
After my urologist sat my wife and I down and layed out the plan for surgery, I almost fell on the floor with the shock and bluntness of what he was saying. During his talk, it was apparent he was assuming I would have surgery and it would be by him. As much as I respect this doctor, I left his office with a resolve to find out more on my own. Fortunately during this chat, my wife had the composure to ask him how many deVinci robotics he had done. His reply was 20 this year and about 20 last year. Immediately i knew if surgery was the route I would take, it would have to be by a more experienced surgeon. After reading two books and most of the posts on this forum, I gained more and more knowledge. Before I even fully decided on the surgery option, I started asking my friends who have had PC and surgery, who their surgeon was. I found my surgeon this way. He is a doctor from Brigham & Womens in Boston. He has done over 1,100 surgeries. When I told my urologist that I would be having surgery by another surgeon (man, that talk was difficult to say the least), he calmly told me that this other surgeon would be my doctor now and I would go to him for followups. I guess that is how it works. Also, my urologist gave me three recommendations for surgeons. One was in Connecticut, relatively close to you. His name is Dr. Wagner and he also has done over 1,100 deVinci robotic radical prostectomies. I hope all of this helps you in some way.
My last two children just went off to college also. Now it's time for me to zero in a getting in shape for my Sept. 15 surgery by Dr. Hu.
), and robot-assisted (using a specialized robot model called “da Vinci”…Google: “da vinci robot”). Some of your questions depend on the type of surgery. My answers are primarily my personal experience with robotic-assisted surgery, and I have found these experiences to be mostly typical of other middle-aged, low-risk men undergoing the same procedure.
By the way, your name isn't Chris, is it? 
At the least you can claim to be in the trendy set in Connecticut. 
Re: another new member 
Kcon's penetrating insight about unloading one of the heavy weights reminded me of another reason this kind of action is so important: it's an important affirmation that we are the same worthy, worthwhile, powerful, potentially joyful children of God that we were before the diagnosis; we are not diminished, dismissable, insignificant, write-offs or castaways! We matter!! We still matter after diagnosis!!! 
Obviously no human being can keep up with that.
Back in the mid-nineties, leaders (including prominent surgeons) at a number of leading prostate cancer treating centers, became increasingly disturbed that PSA screening was resulting in diagnosis and major treatment for many men with very low-risk disease characteristics, the kinds of cases that were similar in characteristics to men who lived to ripe old ages and were never bothered by prostate cancer, but whose insignificant prostate cancer was found during autopsies. Those centers began launching pioneering active surveillance programs, often referred to as "watchful waiting" programs because that was the terminology used for a seemingly similar but far less attentive approach at the time. Giants in prostate cancer treatment were associated with these efforts: Drs. Patrick Walsh, H. Ballentine Carter, Allan Partin, and pathologist Jonathan Epstein at Johns Hopkins; Dr. Peter Scardino at Memorial Sloan Kettering in New York; Dr. Babaian at MD Anderson in Texas; Dr. Peter Carroll at the UCSF in California; and internationally, Dr. Fritz Schröder in the Netherlands; and arguably the dean of all active surveillance, Dr. Laurence Klotz at the U. of Toronto, Sunnybrook. No doubt I'm missing some others who deserve to be in such a list.
In essence, it is clear that the curative window is preserved, with numbers very close to numbers achieved by patients who elect immediate therapy. Moreover the side effect profiles look very good. 
We compared outcomes of 38 patients with small, lower-grade prostate cancer in an expectant management [That's the early Johns Hopkins term for Active Surveillance.] program who underwent delayed surgical intervention at a median of 26.5 months [ranging for 95% of the patients from 17 to 32 months, or a total range for all patients from 12 to 73 months after diagnosis] ... with 150 similar patients who underwent immediate surgical intervention at a median of 3.0 months [95% treated 2 to 4 months, with the total range from 1 to 9 months after diagnosis).... Noncurable cancer was defined as adverse pathology associated with a less than 75% chance of remaining disease-free for 10 years after surgery. Noncurable cancer was diagnosed in nine (23%) of the 38 patients in the delayed intervention cohort and in 24 (16%) of the 150 men in the immediate intervention group. After adjusting for age and prostate-specific antigen (PSA) density (i.e., PSA value divided by prostate volume) in a Mantel-Haenszel analysis, the risks of noncurable cancer associated with delayed and immediate intervention did not differ statistically significantly Get ready for the exact statistical language in the abstract: (relative risk = 1.08, 95% CI = 0.55 to 2.12; P = .819, two-sided Cochran-Mantel-Haenszel statistic) [meaning an 8% greater chance of non-curable cancer, with virtual certainty that even that result was due to chance.] . ... Thus, delayed prostate cancer surgery for patients with small, lower-grade prostate cancers does not appear to compromise curability.
