Young Man with Prostate Cancer

I don't know how to express my thanks to everyone. This has been a good day and I now know there are people who are interested and care. Thanks to all for today.

Hello and welcome to HW, wallen.

Sorry you need to be here, especially at your young age. I wish you, your wife, and 4 daugthers all the best as your go down your own unique PC journey.

I was 56 at dx, one of my urologists youngest PC patients ever, so I appreciate the fact of your tender age.

I had open surgery, as robotic surgery in my area in 2008 was too new to risk, and I was unwilling to travel far to have robotic.
Some of the supposed issues with open surgery generally aren't true in practice. Even though I had surgical complications, I was only in the hospital for 4 1/2 days. Some men, have had open, and were in the hospital for 48 hours or less. Even though they banked 2 units of blood for me, just in case, none was needed. In the old days, blood loss was more common with open surgery, but that is rare now. Also, my open surgeon said the magnification issue with robotic isn't as dramatic as some of the robotic center claim, as he had proper magnification throught a head device and the aid of a large computer screen.

If, you choose surgery, the skill of the surgeon is paramont. There is no exact number to go by, be wary of some of the big name doctors that claim thousands of operations, as sometimes, they are only assisting, not performing the entire operation. Some big centers almost have the feel of a surgery mill. My surgeon only ever does one open RP a day, never more than 2 in a week. On the day of my surgery, I was the only show for him, and he was fresh and prepared for anything.

As far as incontinence and ED, the trouble you will find, is that the numbers are all over the page, and there are no guarantees. For me, incontinence was a minor issue that lasted well under the month. I went into my operation as a non-sparing wide marging operation. The left nerve bundles were removed, and due to complications, the right side had to be left "as is", and was noted in the surgery as "damaged". Despite saying that, I have never had a single day of ED. Was even getting "wood" with the catheter in place. Never used a pump, never used any ED drugs, never have had an injection. My surgeon will not take credit to this day, he simply felt I was "lucky".

We have men here that went to top name surgeons, had intricate nerve sparing operations, and still have severe ED issues one and two years out. The same with incontinence. To a certain degree, it is a roll of the dice. And unfortunately, your young age won't guarantee your sucess or problems in those areas. It's just something you have to factor in if you choose surgery.

With your stated numbers, I would consider all options. You might be a good candidate for "seeds", and the upfront side effects would be less for most men.

Keep studying, you don't have to rush any decision here, don't let anyone, including urologists or radiation oncologists into bullying you into a quick decision. In the end, like all of us, you will come to a decision on your own, that you can live with.

Please keep us well posted, and my best to you.

David in SC

Waallen, You have touched a nerve here, as exhibited by the heartfelt responses. Plz listen to Susan R, I don't think it could have been expressed more beautifully. You can't protect anyone from the universe, you all together, attempt to work in unison with such. The sum of the parts IS greater than the whole, including the universe. You know this, act on it......

Susan R, I am so happy for you both that your, {Waallen, noticed I said your, not his } pathology is so promising. My sister's married name is Susan Ross, fm R.I. any relation, tee hee

Having said all of this, it is your, ie Waallen choice and will not make a value judgement in how you handle your personal life, just advice, my brother in Pca, Logo

Welcome
Sorry to see yet another young guy here too. On the other hand we have to remember that this is the place that guys with problems and questions come for answers adn support.
Golf hit the mark, so niot much more to add.
I was also told that being younger at diagmnosis wouold give me a better chance of recovery from surgery. less ED etc. And I can report that I am one of the lucky guys who isn't too troubled by ED. Things grew of their own accord while the cathetr was still in place, and were performing quite wekll withion a few weeks without pills injections pumps etc, the flip side was that the numberone targhet was missed as my PSA started rising soon after surgery and I had tio have SRT. Yet the situaton regarding ED is still okay after RT as well, and best news is my PSA is down too.
So while we are all different there is a chance that so guys have fewer problems than others, impossible to tell beforehand where you will fiond yourself though.

All the best
Alf

He has Gleason 7 ( hasn't specified if it is 3+4 or 4+3) and is under 50. Both are good reasons to avoid AS even according to many of the pro AS articles posted here and even in the words of many pro AS posters here.

Invasion of the Prostate Snatchers is an awful book imo. I read it. Andy should read it.

I also dread the tired argument that surgeons and urologists are coning men and rushing them into surgery. You think AS is free or even cheap? One could make the same exact paranoid argument about them.

In my opinion Andy should talk to as many professionals as possible, as most of us did, then come back here and share his experience based on what professionals suggest he do.

By the way, I believe that 40% of men who go on AS change their mind and/or require surgery within a few years. That was from a MSK link posted here. In order to do AS with the understanding that you'll probably need surgery/radiation anyway within a few years you need a pretty unique mental makeup. I, and most people who go through this want to take that crap out as soon as possible and get an accurate pathology.

AS was good for my grandfather.

I'm not advocating for or against AS, I said he should find a practice that considers it a viable alternative along with RP, Brachy, etc. And yes, AS with gleason 7 is a viable option depending on other factors. My experience is, if the practice isn't even open to AS, then they won't be open to alot of other options either that he might find more appealing than RP.

And, by the way, That 40% of men choose treatment within a few years of going on AS is kind of the point. As I said, AS does not mean never treating it, it means delaying the treatment until you and your doctor think you need to, or want to, treat it, whether that be 6 months or 6 years.
I don't see where it takes any particular "mental Makeup" to do that. I travel all over the world via planes, trains, cars, etc. Statistically, I have a much better shot at being killed in a travel accident than I do of my early stage PC suddenly growing in a geometric progression between 6 month check ups, but it's not something I think about everytime I get on a plane.
It also means that 60% of the men on AS, stick with it for a fairly long period.

Waallen,

I know it's all a bit much when you get the news. I couldn't stop thinking about having cancer and thought I was gong to die soon. I had thoughts like I wouldn't get to see my kids (13 and 16) graduate or see my daughter get married...but you will get through this. My wife was the only person I told and I shared everything with her. She went on every appointment with me, took notes and set up the appointments for me.

Take a deep breath, take your time and look into all the treatment options you can. Ask questions here and of your doctors. You can read my journey by clicking on the link in my signature. Good luck.

davidg:

you said above:

"It's a well known fact that a tremendous amount of men are not psychologically ready for"

Are you stating this as an accepted fact, or another of your personal opinions? If it is a fact, please cite a source for it.
I think you underestimate a lot of men in your statement. I think a lot of men would find AS acceptable, if it were encouraged by doctors for men with low grade PC diagnosis. Under AS, under a doctor's care of course, many men would find taking regular PSA test to continue monitoring, and the occcasional biopsy if things worsen in time, to be less scary on the mind, then committing to a serious primary treatment such as surgery. In my everyday life, I have found many men so afraid of treatment, that they won't submit to tests, i.e. PSA tests, because they don't want to know that something might be wrong.

I think your statement would vary vastly from person to person, not everyone is weak minded or weak willed when it comes to such matters, in my opinion.

David in SC

Purgatory said...
davidg:

you said above:

"It's a well known fact that a tremendous amount of men are not psychologically ready for"

Are you stating this as an accepted fact, or another of your personal opinions? If it is a fact, please cite a source for it.
I think you underestimate a lot of men in your statement. I think a lot of men would find AS acceptable, if it were encouraged by doctors for men with low grade PC diagnosis. Under AS, under a doctor's care of course, many men would find taking regular PSA test to continue monitoring, and the occcasional biopsy if things worsen in time, to be less scary on the mind, then committing to a serious primary treatment such as surgery. In my everyday life, I have found many men so afraid of treatment, that they won't submit to tests, i.e. PSA tests, because they don't want to know that something might be wrong.

I think your statement would vary vastly from person to person, not everyone is weak minded or weak willed when it comes to such matters, in my opinion.

David in SC

It has absolutely nothing to do with being "weak minded" that is just a plain ignorant remark by someone who obviously hasn't given much thought to the subject or is just looking for yet another pointless pissing contest. There is nothing weak about any of us and what we go through. You should know better.

The fact that a lot of men are not psychologically ready for AS is mentioned in pretty much every AS related paper/study posed here. In fact, when the board AS proponents talk about it they say it is the responsibility of the AS people out there to educate the public about the science of AS. You have the thousands of candidates who actually would qualify who just can't do it, many have stated so here, and you have the 20% of participants in AS who drop out after two years because they can't handle it. That 20% was posted here by a proponent of AS. They'll confirm it for you and perhaps you should read their links with as much care as I do. That specific report pointed out that 40% of AS participants either require different treatment or drop out because they cannot deal with it psychologically. They said the ones that dropped out for psychological reasons made up 20%. None of these people are "weak minded". How shallow and judgmental to assume they are just "weak minded".

Please try not to constantly start a debate/pissing contest with people, it's frowned upon.

Post Edited (davidg) : 11/6/2011 2:28:44 AM (GMT-7)

waalen,

I was diagnosed with PCa on July 5th this year with a similar Gleason to yours. Like you, I found this site and learned much from the good people here. I know the fear you're experiencing. It weighed on me like a lead weight on my chest and it was hard to even breathe at times. That said, I dug into the available material here and in other places. I read and studied. At the end, for me, the decision was not what type of treatment but rather where to have the robotic surgery done. I bought in early on to the concept of taking the risk up front with the surgery and never even having a cavity until now, I knew the right choice was robotic. Being in Dallas, there are centers of excellence here and in Houston and in San Antonio. I searched locally at first and interviewed surgeons. I then broadened the search as I felt the surgeons were using statistical data that all sounded alike (I swear most must be quoting Johns Hopkins open surgery results from 2000 -- to be conservative, or perhaps Memorial Sloan Kettering results). What I knew in my heart was they were NOT giving me the outcomes they themselves experienced with their own tools. This is an unfortunate reality you mush consider when speaking with surgeons in my opinion.

There are two types of surgical practices in the country: private practices with a surgical center or hospital affiliation and academic medical centers. The academics track their outcomes but may at times use residents in surgery. The largest private centers of excellence may have a factory set-up with multiple robots and surgeons who oversee surgery in a few rooms at a time while doing the critical parts themselves. Neither is necessarily a bad thing.

Eventually, if you go the surgical route, you'll find a surgeon you are comfortable with, as I did when I spoke with Dr. Thomas Ahlering, in Irvine, CA. He was the surgeon who walked me through his outcomes in cancer removal, incontinence and ED. He told me about the advances in his surgical technique through the increasing traunches of patients as he changed the ways he performed the surgery (http://www.urology.uci.edu/prostate/videos.html).

I was confident. We traveled to Irvine for the surgery and stayed through the catheter removal seven days later. I used a pad the first day (cause they tell you to) but I did not really need it. I went to a small pad the next day (just in case). I abandoned the pad the next day. I was doing kegels (you'll learn about this soon) and I think the exercises caused some late evening leaking -- as tired muscles will allow leakage. We had a California surgical vacation -- complete with catheter. We had good news from the biopsy as we walked along the San Clemente pier -- no positive margin and a lower Gleason!

Only one of my nerves was fully spared (if that can actually be claimed with these fragile membranes). I had some bulging on the left apex. However, my wife and made love 17 days out from surgery with only my 1/4 viagra I'm taking as a vitamin. Was it the best sex ever. Well no, but it gets better each week and I'm probably 80% when I take a full viagra.

My advice if you go the surgical route (open or robotic). Choose the right surgeon like your life depends on it. Ask every surgeon you meet who they would go to and why (very telling -- as most seem to point to the top 5-10 surgeons in the country).

waalen, you're going to be fine. Breathe. And feel free to email me from my profile.

Norm44

Norm44 said...
waalen,

I was diagnosed with PCa on July 5th this year with a similar Gleason to yours. Like you, I found this site and learned much from the good people here. I know the fear you're experiencing. It weighed on me like a lead weight on my chest and it was hard to even breathe at times. That said, I dug into the available material here and in other places. I read and studied. At the end, for me, the decision was not what type of treatment but rather where to have the robotic surgery done. I bought in early on to the concept of taking the risk up front with the surgery and never even having a cavity until now, I knew the right choice was robotic. Being in Dallas, there are centers of excellence here and in Houston and in San Antonio. I searched locally at first and interviewed surgeons. I then broadened the search as I felt the surgeons were using statistical data that all sounded alike (I swear most must be quoting Johns Hopkins open surgery results from 2000 -- to be conservative, or perhaps Memorial Sloan Kettering results). What I knew in my heart was they were NOT giving me the outcomes they themselves experienced with their own tools. This is an unfortunate reality you mush consider when speaking with surgeons in my opinion.

There are two types of surgical practices in the country: private practices with a surgical center or hospital affiliation and academic medical centers. The academics track their outcomes but may at times use residents in surgery. The largest private centers of excellence may have a factory set-up with multiple robots and surgeons who oversee surgery in a few rooms at a time while doing the critical parts themselves. Neither is necessarily a bad thing.

Eventually, if you go the surgical route, you'll find a surgeon you are comfortable with, as I did when I spoke with Dr. Thomas Ahlering, in Irvine, CA. He was the surgeon who walked me through his outcomes in cancer removal, incontinence and ED. He told me about the advances in his surgical technique through the increasing traunches of patients as he changed the ways he performed the surgery (http://www.urology.uci.edu/prostate/videos.html).

I was confident. We traveled to Irvine for the surgery and stayed through the catheter removal seven days later. I used a pad the first day (cause they tell you to) but I did not really need it. I went to a small pad the next day (just in case). I abandoned the pad the next day. I was doing kegels (you'll learn about this soon) and I think the exercises caused some late evening leaking -- as tired muscles will allow leakage. We had a California surgical vacation -- complete with catheter. We had good news from the biopsy as we walked along the San Clemente pier -- no positive margin and a lower Gleason!

Only one of my nerves was fully spared (if that can actually be claimed with these fragile membranes). I had some bulging on the left apex. However, my wife and made love 17 days out from surgery with only my 1/4 viagra I'm taking as a vitamin. Was it the best sex ever. Well no, but it gets better each week and I'm probably 80% when I take a full viagra.

My advice if you go the surgical route (open or robotic). Choose the right surgeon like your life depends on it. Ask every surgeon you meet who they would go to and why (very telling -- as most seem to point to the top 5-10 surgeons in the country).

waalen, you're going to be fine. Breathe. And feel free to email me from my profile.

Norm44

Norm - wonderful message. I agree with everything you said. Your wife must be good, mine told her entire family. I didn't mind their support anyway.

Hey young man, how are you doing? I bet, like I was, swimming in opinions and statistics when I was diagnosed with prostate cancer. This I know for a fact - almost everything you hear or read will have a slant on it. Nothing you hear or read will consider what is best for you. Also, you are only given a small percentage of the information that you need to make a really good decision for yourself. It is not that doctors and other don't want to give you good info, it is because they do not consider it from your perspective. All info that doctors give to you is based on statistics that they really aren't sure of themselves - hand-me-down information from school.

I was diagnosed five years ago was and swimming in information and misinformation. The statistics about UI was completely bogus - and much of the information that I was given just did not compute. Bottom line for me was this - did I really want to take a chance on killing my sex life and/or did I really want to take a chance on not being able to hold my urine? It is all about the chances!!!
The treatments they have today are very, very crude, hopefully, they well drastically improve in the near future.

I am now 63 and was diagnosed five years ago. Unfortunately for me, it was just after I fell while building a house and had a burst fracture of my L1 vertebrae and sustained some spinal cord damage. Luckily for me the permanent damage the spine was not debilitating but left me with much pain in my legs. On a follow up visit my doctor recommended seeing a urologist - and this guy could not resist give me a finger wave. He felt something no other doctor could feel and recommended a biopsy. Man!! I had no idea how much fun this biopsy was going to be!! crap, oh dear!!! A week or so late, guess what - yup, I had prostate cancer. And then I had the pleasure of going through exactly what you are experiencing right now.

The urologist wanted to operate, the radiologist wanted to irradiate, and just I wanted my normal life back.
Because I did not have what I felt was GOOD information and I was confused, AND I considered the consequences, I decided to do nothing. Watchful waiting! And in the past five years of watchful waiting, I have enjoyed a good sex life and have gotten more information on prostate cancer.

The bottom line is, I did the right thing for me. I am knocking on wood right now but I have no effects of cancer - though I know I have it because a biopsy says I do. BUT, and this is the big question that no one can answer, is how fast is it growing and/or how fast will it double in size? When will I know, from it's effects, that it is present? How much of the prostate is affected? How much of the prostate can be tissue sampled (this I still have not been given an answer to)?
Young man,we know that the prostate cancer is usually very slow growing so you have time. Unless your biopsy is very bad, you have plenty of time to make a decision, even years. Do not make a quick decision and DO NOT be pressured from anyone or even yourself.

Do you have any signs of prostate cancer? Chances are that you could live the rest of your life with this cancer without it really giving you any signs. No one knows!!! Guys I know that had the surgery or treatments are not happy with the result.

I have very serious doubts about the whole procedure and how much good is being done and how many lives are being saved or lost. The biggest thing is that there is no "All Knowing Source" that you can rely on for unbiased information. For me, it boiled down to a normal life versus a 20% (a good number????) chance of a life I would not be happy with. Not funny, but, the 20% odds are worst than Russian roulette. Who really collects that data? And just how reliable is it? I question all of this info. Just as a side note of absolutely no value, and not to call into question anyone's creditability, doctors get paid a LOT of money for their treatments and not much for their consultations (unless they lead to treatments.) It is a money making proposition and it pays for a lot of schooling. For some reason, I do not know anyone who has had the surgery and was given his prostate or a doctor that had it analyzed.

During the last five years my PSA (I know this is only an indicator) has only rise to 1.95 from about a 1.35.

Here is a question that I can not answer - without the PSA test (which has justifiably been called into question) and without the very unreliable finger wave - what would trigger the need for further investigation? So I guess we are talking bodily signs of prostate trouble. But what if it is something else giving the trouble and in the course of diagnosing a swollen prostate, a biopsy is performed and it is discovered that there is cancer that would otherwise never advanced to the state of giving you problems.

Personally, I have turned my attention towards my eating habits and have decided that, for the most part, if it is not good for me, it does not get in. I have decided to chose mainly organic foods and through this whole process maybe this prostate cancer may have saved my life of something else by causing me to switch to more healthy foods.

Maybe in another five years I will need to have something done but then maybe not. Young man, your life is YOURS do what is best for you. I have been able to live without fear, perhaps others could not live with this in the background - maybe I am just ignorant. Whatever you do, do it armed with the best information you can gather and be unabashed in asking your doctors question - they really do not have anything at stake. Also, ask for a time frame in which you should make a decision - this should be an almost unanswerable question.

One of the best things I learned from all of this is that sugar is not your friend. In every health book I have read, it says do not take in any unnecessary sugar. This may sound radical but you can equate sugar to poison for your cell reproduction.