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I agree wholeheartedly with Fred, as long as your husband meets the following criteria. In addition to the Gleason 6 and single core that is only 5% cancerous, he should have a free PSA that is greater than 15% and a PSA density of less than 0.1 to 0.1.5. Also, his PSA should be less than or equal to 10 ng/ml.
Now, you are certain to hear from some that active surveillance is not appropriate because your husband is too young. However, it is important to keep in mind that AS is all about monitoring with "curative intent", meaning that it is practiced with the intention of seeking treatment when there are signs of possible progression. As long as that is understood, his age should not be a factor.
Lastly, while on the subject of age, if anything, it should be looked at as a reason not to seek treatment at this time since the side effects of surgery, and radiation, include ED. So, if your sex life is important to the both of you, as it was to my wife and myself when I was diagnosed seven years ago at age 51**, then you have the ability to preserve that for as long as possible.
**I was where you are now back in 2007, except that I had a surgery scheduled with the head RP surgeon at Dana Farber Cancer Institute in Boston. After doing a lot of research, I canceled that surgery and have been monitoring my cancer ever since. If you want to learn more about the details of my AS management, then type in Alan Murphy under Survivor Stories (and grab a cup of coffee because it is long).
Good luck with whatever you decide!
Alan M in the USA
Hi Rene,
In younger men prostate cancer tends to be more aggressive, thus warranting active treatment with curative intent sooner rather than later. By guided by your treating physicians advice Rene. Obtain second, even third opinions if you feel the need to. It is important that the decision you make on treatment is arrived at after receiving expert medical advice tailored to your husband's particular circumstance. Time is presently on your side in making that decision. Do plenty of research, as questions, be informed and a make a decision. Just remember that your husband's prostate cancer will progress over time without treatment, and the curative window can close without warning. Be guided by your treating physician's advice. If it is any comfort, were I in your husband's position, I too would choose surgery.
Rene do feel free to bounce any questions off us, just remember that while our responses at well intentioned, they are not expert medical opinion.
Please consider doing your own research. Your treating physician may not be knowledgeable of all of your choices and also may come with treatment bias. Please google "Pivot Trial"to get a sense of the big picture. A quote from this trial conclusion "Radical prostatectomy did not significantly reduce all-cause or prostate-cancer mortality, as compared with observation, through at least 12 years of follow-up."
Fred the Pivot Trial was a flawed study roundly lambasted in academic circles. Below is an extract of a critique on that study from John Hopkins.
"All the PIVOT study tells us is that for a man who has a life expectancy of 10 years or less and who has low-volume disease, surgery is not an ideal option. This is old news, and is far from being a “game-changer.” The information in this article is simply not good enough to be of help to an otherwise healthy man in his forties, fifties, or early sixties trying to figure out what he should do." Furthermore Fred, even the Pivot Study authors conceded their findings do not have applicability to young men.
Fred whilst I do not doubt your good intentions, misinformation is less than helpful, and even sometimes downright dangerous. By all means relate your anecdotal stories, as they can be very helpful to persons seeking information such as Rene.
Perhaps a hypothetical can clarify this debate. Suppose we started doing needle biopsy's on all 30 year old men regardless of their PSA value. Autopsy studies have shown that 30% of these men have prostate cancer, of course the vast majority would qualify for active surveillance under the Australian guidelines. Are you suggesting that all of these men have RP's?
This is a link to the http://prostatecancerinfolink.net/2013/02/27/active-surveillance-as-a-management-strategy-for-younger-men-with-low-risk-disease/.
A quote from this link: Some 47 percent of all men ≤ 55 years of age who are diagnosed today with low-risk disease (as defined above) appear to be good candidates for active surveillance.
John, you clearly have a most conservative view when it comes to the guidelines for AS, one that is commonly voiced by "cutters", as I call them. I am talking about RP surgeons, such as the world renowned Dr. Patrick Walsh of Johns Hopkins University. For people like you and them, AS is only appropriate for older men that, more than likely, will not live another ten years.
Thankfully, there are physicians out there in the medical community that have a broader view, thanks to the results of several studies, some of which have been highlighted by Fred in this thread. Unfortunately, as all of us who have done our research know, the world of PCa is filled with conflicting studies and viewpoints. So, the fact that Johns Hopkins University addressed their perceived flaws in the Pivot Study is not exactly news at 11. In fact, I will go a step further. From what I have read, I have found that it is not uncommon for those who disagree with a study’s results to try to shoot it down by making reference to that which supports their position, while conveniently leaving out those things which don't. So, the best a person like Rene and her husband can do is to read the study, as well as the rebuttals, and decide for themselves (and I suggest they do so as part of their research).
Now, I need not fight Fred’s battles for him because I am impressed by how he's doing on his own addressing John's old-school surgeons’ view on the treatment of prostate cancer. I will say this, however: Fred's hypothetical was a legitimate question that a person with your viewpoint should have to answer. It was a very straightforward question, with no gray areas, that could and should have been answered with a simple yes or no, and here's why, (but to answer it was a lose/lose proposition for you). The problem is that you couldn't say no without exposing the contradiction between your answer and your position. On the other hand, a yes answer would show the sheer folly in that kind of thinking. So, you chose to slough it off, and that spoke volumes.
Lastly, as a young man who started AS seven years ago at the young age of 51, I want to add that active surveillance for the young is all about choosing to live with an "acceptable level of risk" in order to preserve your existing quality of life for as long as possible. Everyone’s circumstances are different; their stats; what is important to them in their life, etc. So, what is an acceptable risk to one may not be to another. We all have to decide that for ourselves; yet the one common denominator that we should all share is that we can say that we thoroughly researched the options in arriving at our decision. The last thing you want to do, IMO, is to blindly follow your physician's advice without educating yourself on the subject. The world of PCa has risks; AS has them; treatment has them; the thing for Rene and her husband to do is to learn about them. I think that is something that we can all agree on.
Happy Thanksgiving to all of you in the USA, and best wishes to the rest of you around the world.
Alan M in the USA
Alan I have no qualms about informed test pilots. It is your journey and your choice about how you get there. What I have problems with, is the would be travel agents offering a more scenic journey to those who are not even sure if they want to take the trip.
Us old PCa warriors know the in's and out's of the various treatment modalities. Newly diagnosed men or their loved one's who come on here seeking support and information, for the most part don't. They maybe scared. overwhelmed, and perhaps vulnerable as well. Ideal candidates for travel agents to open up a whole new unconventional way to undertake their journey.
And why do the the travel agents weigh in with such vigour? Because they have real faith in their beliefs, no matter how half baked and unscientific some of them are, and surely it is their duty to sway the waivers into their line of thinking. Needless to say the travel agents will not be there for the journey. No, that is the domain of the tour guides, the treating physicians, who in addition to prescribing treatment, also need to also dispel the myth and highlight the danger of unconventional journeys. Needless to say most travellers accept the tour giude's advice over that of the travel agent. But for the cadet test pilots, they start their journeys confident that the travel agent has not given them a bum steer. That is of course till things go wrong. Hmmm the PSA gathering momentum, the unexplained rib, hip, back pain. Hmmm perhaps we had better consult a tour guide. And of course the tour guide is there to offer treatment for the now advanced PCa. All eminently foreseeable, preventable, treatable, and potentially curable if only the cadet test pilots took the tour guides expert advice instead of just making a booking with the travel agent.
Wow John, you were rambling in your last post, undoubtedly pleased with your analogy. It seemed obvious to me that it was another attempt to avoid addressing direct questions and scientific studies like the one presented on the New Prostate Cancer InfoLink.
What a sad legacy for Terry, to have you, his old nemesis, attempt to squelch the AS viewpoints on this forum with your rigid, and outdated, old school views. One of Terry’s goals was to help men understand that AS was a viable option for some that should be researched along with the various treatment choices. In your postings, you have made it abundantly clear that to talk to a newly diagnosed person, with a life expectancy of greater than ten years, about AS is irresponsible, unscientific, and even dangerous jargon not supported by the medical community. I think we both know that isn’t true. There are many highly-respected medical professionals that support AS for younger men. For example, in addition to the Scientific Advisory Board over at the New Prostate Cancer InfoLink, there are 25 of the world’s leading cancer centers that comprise the National Comprehensive Cancer Network (NCCN). This organization lists AS guidelines for men from 10-20 plus years old (see page 44 of the NCCN Guidelines for Patients), and it recommends only observation for those whose life expectancy is less than 10 years**.
**It is interesting to note that Dr. Patrick Walsh, a pro-RP surgeon if ever there was one, feels the same way about men who are too old to live another 10 years. In his book, "Guide to Surviving Prostate Cancer", he says, and I quote, "these men are very unlikely to die of prostate cancer, and if the cancer progresses, their symptoms can usually be managed well with hormone therapy. (Frankly, these men should not have had a PSA test and biopsy in the first place)”. So, monitoring with "curative intent", which is at the heart of AS, is not the goal for these men, (which shows John that your thinking is not keeping up with the changing times).
In closing, as Terry said himself, by providing this information, I am only looking to inform those seeking advice of the different options available to them. So, in no way am I telling them what they should do. What I said in my last e-mail bears repeating: “the world of PCa has risks; AS has them; treatment has them; the thing for Rene and her husband to do is to learn about them. I think that is something that we SHOULD all agree on”. I changed the word "can" to "should" because apparently you and I don't agree on that. It is your view that this information should be kept from them, and in wanting to do that, you are truly doing them a disservice.
Alan M in the USA
P.S. I hope that this exchange of opposing viewpoints ends here. Everyone now knows where we stand; so, I don’t see how continuing the debate would benefit anybody. From here, the readers can take the information and do with it what they will.
Dear Alan and Fred,
My closing remarks to Terry over all those years always ended with, "I wish you good passage on your journey". May I now extend the same to the both of you.
I confess the travel agent/guide analogy is an old recycled chestnut, which I drag out from time to time. Terry quiet liked it, but of course referred to it as a "fractured fairytale".
Rene:
One of the most frustrating aspects of Pca is the lack of agreement even among the experts. About the best any of us can do is to research our options and make a decision based on our individual circumstances. Oftentimes our decision is swayed by our personal values.
As a part of your research effort you may find the following two resources helpful:
(1)Bob Marckini's book "You Can Beat Prostate Cancer..." One of his chapters is devoted to a discussion of the advantages and disadvantages of the more common methods of treating prostate cancer.
(2) The Survivor's Stories component of this site. You can get a good idea of what to expect based on the treatment choice and the experience of others who have documented their results. Furthermore you can tailor your research effort on the basis of your husband's statistics including age, PSA and Gleason score.
Best wishes Don O.
I normally don't like to see younger people do active surveillance as they have too much to lose if things go haywire. This however looks like a pretty early stage cancer so I can see AS being a good temporary tactic - provided that the patient can deal with it mentally. I was only 57 ( looking in my 40's )when I had my low grade prostate cancer removed just to be done with it as I was more focussed on increasing my odds of survival rather than worrying about possible side effects of the surgery. I chose a very top surgeon which is the key. I think that you have to have the proper mental makeup to cope with active surveillance. It's a personal decision.
My Goodness, what a great discussion. Onr thing I didn't see mentioned here is the benefit of getting to know guys who have already been treated for PCa and how it affects their daily lives. I wasn't a "youngster" when I was diagnosed 5 years ago at 67, but I go to the gym and watch my diet
and unless I crashed my motorcycle, I expected to live more than 10 years. I was diagnosed with GS 6 in two cores each < 5%. ALL my Drs recommended treatment, but I decided to attend a meeting of the local PCa support group UsToo. I would highly recommend this for anyone weighing the pros and cons of any form of treatment including AS. And I would recommend attending many meetings--get to know the guys. They will be more than willing to share their stories with you. In the five years I have attended
UsToo meetings I have yet to find anyone who regrets being treated or their particular choice of treatments. I don't how it is in other chapters, but
in my Us Too chapter out of 50 or 60 guys, I was the only one doing AS. I remember one guy in his mid 50's who was extolling the virtues of robotic RP who told me that total ED and complete incontinence (> 3 pads a day) was a small price to pay for his life.
I wished I could have stayed on AS forever but unfortunately I apparently
had an agressive form so that after 2 years on AS, my last biopsy showed lots of GS8 with many cores positive, several with over 90%. I knew then I must choose a treatment, but after 2 years talking with with PCa suviviors (and reading Bob Markini's book) I chose proton therapy--a treatment that not a single guy in my UsToo group had ever heard of at the time. Now 3 years post-treatment I can join my brother UsToo'ers
in saying I'm glad I chose the treatment I did. I guess the bottom line is to do the "research" until you are comfortable with your course of action-whatever it might be.
My husband (in his last 40's) was recently diagnosed with prostate cancer. Gleason index 3+3. Five percent of 1 core was positive. We are thinking about surgery so far. Please help with suggestions, recommendations for surgery and life after surgery.
I forgot to add something important. My husband had a septic shock during his biopsy and had to take a lot of antibiotics to come out of the ICU. The prospect of another septic shock is scary.
What is the probability of ED and recovery from ED?
If you use a top surgeon your husband may be able to function relatively normally as he is young. Perhaps need to get assistance from Viagra etc. Lose about one inch from his erection. My operation lasted less than one hour and I had no real pain afterwards. Catheter is a nuisance and stool softeners are important for about a month afterwards. Patient needs to walk a lot after surgery to get rid of gas which could be painful. Your husband must use a very top surgeon however if he chooses surgery.
I have done my best to keep this brief, but there is still a lot of pertinent information to cover. I do not have Dr. Marckini’s book, but I do have Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer". For the record, Rene, he is a world-renowned RP surgeon at Johns Hopkins, arguably, one of the best cancer centers in the world. They did a sexual function (and urinary incontinence) study of younger men with an average age of 57 (89% of these patients had both of their neurovascular bundles preserved). At three months, 38% of these men were potent. At six months, 54% were. At twelve months, the number increased to 73%, and at 18 months, 86% were potent (potency being defined as an erection sufficient for vaginal penetration and orgasm). Keep in mind that these figures reflect surgeries performed by top-notch RP surgeons on staff at the hospital. The doctor himself stresses what bobbyboy pointed out to you in his post, and that is that it is imperative to use a surgeon recognized for his excellence in this field in order to expect these kind of results.
The Dr. also has this to say on the subject in another section of his book, and I quote: "In most skilled surgeons hands, if both neurovascular bundles are preserved during a RP, potency should return in at least 80% of men in their 40s and 50s, and in 60% of men in their 60s". He is also quoted as saying that you should "be very patient. It can take up to four years for some men to experience FULL recovery of potency. Your body has been through a trauma; it needs time to recover". (FULL is the key word there as he points out that most patients experience an improvement in their erections over time, adding that the quality improves month by month).
Speaking of the quality of a man's erection after RP, he says that when a younger man undergoes a nerve-sparing radical prostatectomy, it's likely that about 20% of the nerves involved in erection are damaged, 60% are preserved normally, and 20% are temporarily disabled but eventually recover. So, at best, a younger man after prostatectomy has about 80% of these nerves left for erection. There is also another problem he points out with erections in men after RP and it is called "venous leak". In a nutshell (this is me talking since the quote is a bit long) the penis must be fully engorged for the veins to clamp down so as not to allow the blood to flow back out. Early on, after RP, the blood flow into the penis may not be rapid enough to cause these veins to automatically close. So, if a man never gets a full erection, there is a constant leak of blood out of the penis that affects the quality of the erection even more.
Now, in finishing, the Dr. has so much more to say, including recommendations for how you can continue to enjoy your sex life during this difficult transitional time, but that is something that you would have to buy the book (or check it out at your local library) to read about since it is far too detailed to go into here.
Rene:
I'm attempting to get an authoritative answer from an author who thoroughly researched your question. See a copy of my e-mail below:
Today at 8:09 PM
D. M.
I'm in Texas without a copy of Marckini's book. I would appreciate knowing what he says about the DISAVANTAGES of surgery in order to answer a wife's question she raised on YANA.
I hate to inconvenience you like this. but I would like to answer her question. She is particularly interested in the likelihood of ED if her husband opts for surgery.
Regards Don O.
P. S. Maybe another participant on this site can provide us with MarcKini's research findings on this topic.
Rene:
I asked Bob Marckini if he could help me respond to your question; his response appears below:
"Huge mistake to do surgery for a Gleason 3+3 in my non-medical opinion, Don. One thing they should consider is Active surveillance. With surgery, including (and maybe especially) DaVinci robotic surgery, the likelihood of impotence is about 75% and incontinence about 35%."
Mr Marckini also sent references to 17 technical articles describing outcomes of surgery and proton therapy. If there is any interest on your part I will do my best to see that you get them.
Regards Don O.
When I was diagnosed in early 2014 my wife and I went on a search for information. Talked to our family Doctor, a radiologist, a urologist (laperoscopic) a urolologist (robotic) and several friends who had been through what we were going through.
In our quest for information we found a book called "The Decision" by Doctor John McHugh. He is a urologist who had Prostate cancer. The book is not about Prostate cancer per se but is about how he made his decision on what treatment to undergo. His decision making process helped us reach a treatment plan that was the best for us ... and probably saved my life.
Through all of this process keep this in mind. What worked for your friend or other Prostate cancer patients might not work for you. You must know your cancer details, you must understand the benefits and risks of each treatment, you must know your underlying health issues and you must know what you are willing to live with.
Doctor McHugh's book will lead you through the process of making the best decision for you.
I have a couple of suggestions, from when I was in your situation in 2008. I'mow starting my 6th year following my Proton Radiation treatments and my PSA is 0.09. (You can find this also under my history page.)
I found a couple of books that were of great value to me. The first is by Robert Marckini, about Proton Radiation, which was my choice of treatment 6 years ago, and I went down to the Proton Center at the University of Florida at Jacksonville. Very powerful book which sent me in the right direction. Basically the proton beam travels only 1/2 of the way through the body, and when it reaches the target point in the prostate gland it explodes, instead of going completely through the body. A lame description I know but you can research a better definition.
Another book I examined was Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. Written in 2001 and updated in 2007, I suggest this book as it is, or was, the bible regarding prostate surgery, and it provides a number of drawings of the prostate area which show how delicate this operation is. Beginning on page 273 of this 500 plus page book there are 8 drawings of the surgery required for the removal of the gland. I found it very sobering to see these drawings, believe me. And one other book from 2005 is a Primer on Prostate Cancer, written by Stephen B. Strum and Donna Pogliano.
