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Posted 8/8/2012 3:37 PM (GMT 0)
Hello,

First off I am glad to find such a well moderated forum.  I plan on utilizing the wisdom here for the foreseeable future.

Second, please forgive the underlying cynicism and morbid tone to this inquiry, my abilities to monitor some thoughts and prevent there expression is intermittent at best.

I am 53 and have been closely monitored by my primary care physician due to elavated PSA scores, 2010 1.9, missed last years physical, and just recently had a PSA of 4.95.  The DRE indicated a swollen nodule on one side of my prostate.  I am scheduled for a biopsy on 8/14/2012.

Since yesterday, when I was informed of the need for a biopsy, I have obsessively searched the internet for answers, options and prognosis. 

Again, I do not know whether I have prostate cancer or not, but from the approach of my urologist, the conclusion is that I am going to have to look at treatment options.

What questions should I ask my urologist about surgery?  From these forums it appears success is based upon surgical skill, and if possible I have decided to ask for the da Vinci RP.  What is it that I need to know of his experience before I decide to allow him to be my surgeon?

At this point I become cynical and angry.  I am a father of a young teenager.  We have plans to learn to kayak together, white water rafting (again), some hiking, and continue our goal of riding as many roller coasters as possible.  Also I am an avid gardener. 

However from reading the posts I am under the impression that I will spend more time changing my pads/diapers/underwear and any rigorous outdoor activities are to become a distant memory.  Essentially pad changes will be as frequent as my urinations, and time in public arena's is marked by the anxiety of "am I leaking?" 

This actually concerns me more than ED since my wife and I are much more focused on the connection between us than the actual act of intercourse.

Lastly, and this is conjecture, but my prayer is that the cancer is localized, my gleason score is low.  What is the prognosis?  Will I have a decent quality of life ?  What is the long term prognosis for contained prostate cancer caught early?

I am mulling over the question as to whether a surgery is a placebo, and the underlying truth is I have 5 to 10 years left with my child.  And the real choice is do I live those years as a leaky old diaper or be more vibrant, and alive, able to give my child some life experiences, and prepare our family for what is to come.

Sorry for the blunt description there.

Widom is needed.  I will work on my cynicism.

Be Well,

Bruce

 

Posted 8/8/2012 3:48 PM (GMT 0)
Bruce, Take a deep breath! All is not lost. First you can never assume first step is to find out if there is a problem. If there is there are many treatment options. Your a young chap and have lots of life ahead of you. If and I do say if they find that you have PCa then you can deal with it. Many of us that have had surgery do not have to change pee pads! My activities have not been curtailed by my surgery. ( I had open radical) I am a bit older than you, had my surgery at the age of 57 and I ride a road bike and that is a small seat. I have done 50 miles rides with no problem. I have hiked in the canyons out west. Not been a problem.

I can assure you that you will be able to ride as many roller coasters as possible, and kyak with your boy.

I am not saying that there may be problems but they are not overwhelming most of the time.

If you wish to communicate more either here or in private my email is listed in my profile.

Best of luck and please do let us know.

Cajun Jeff
Posted 8/8/2012 3:54 PM (GMT 0)
Bruce, let's hope the biopsy finds no cancer.  PSA can be elevated for reasons other than prostate cancer, and even findng a "nodule" isn't definitive.

I'm only going to address one of your concerns.  Yes, some guys have continuing problems with incontinence.  My uro and I talked about that prior to surgery, and his calm response was that if that turned out to be the case, there are ways of dealing with it and correcting it.

Fortunately, it hasn't been a problem for me at all, and I'm grateful for that.  My activity level is, in every way (well, except in the bedroom) exactly as it was before.  I bike, I garden, I golf, I take long walks, I rough house with the grandkids, just as before.  In fact, prior to surgery my prostate was so large that urinary frequency and urgency were driving me crazy.  I was in constant danger of wetting myself if a men's room happened to be closed for cleaning.  Now, that's no longer a problem at all.  I can drive several hours, get out of the car, and I don't have to make a dash for the nearest john.  So, try to be more at ease on this point, at least.  Take these things one at a time.

We've all been where you are now, and it can be a load to deal with.  Stay calm, educate yourself even more, and do what feels right for you.  Best of luck.

Posted 8/8/2012 4:07 PM (GMT 0)
Bruce,
What you are experiencing is fear of the unknown which is most often much greater than the actual outcome. First, you don't know that you have PC yet. If you do there are many options for you. Yes surgery does cause incontinence, but the actual rate is about 11% and radiation options cause zero incontinence. Prostate cancer is really three different diseases, or more. Until you get biopsy results and know what risk catagory you are in you cannot determine outcomes.
Low risk PC has an 85% to 99% chance of total cure and death from this type is very rare.
Intermediate risk has about a 70% chance of cure and high risk about a 60%-65% chance.
The survival rate for any PC dxed in the US is 100% in 10 years.
Posted 8/8/2012 5:01 PM (GMT 0)
Hopefully you don't have to stick around. Sorry you are experiencing such angst.  The stigma of a lifetime of leaky old diapers must why so many men stay quiet about their PC, espeically if they've had surgery. I've read many stories here of men that are not in diapers, nor pads (some are, but making progress), and live very active lives. My husband is 46, and completely dry. He is an avid cycler, and just resumed riding within the past 2 months (with a pad, or should I say CUSHION on the seat, but still :). He took our daughter, age 10, on a long ride just this week. Turns out she likes to cycle too.

Take care. This really is a great place, if you need to come back.

Post Edited (walkbyfaith) : 8/8/2012 11:07:51 AM (GMT-6)

Posted 8/8/2012 5:28 PM (GMT 0)
Your subject line is almost the same as mine was on my first post. It is a shock. I too thought about my kids (13 and 16 at the time - and how my death would affect them - ah, they should be so lucky! :) tongue ). Hopefully you do not have PC and can just move on with your life. A year and

Take a breath, in all probability you will lead a long and active life. Take this time to educate yourself and ask any questions that you have here on this forum. There is a lot of experience and knowledge to benefit you from the people here.

You can read what I went through by clicking on the link in my signature.

Don't rush into anything. There are lot's of options.

Good luck to you.
Posted 8/8/2012 5:30 PM (GMT 0)
Bruce, welcome here at HW. Sorry you may need our "services" so to speak.

For starters, you are in the pre-fear stage, you don't even know you have prostate cancer. The scheduled biopsy is justified with what you wrote. The fear of the cancer is already making you think way, way ahead, and thinking of all the worse case scenerios in advance. This is not going to help you at this point.

You need to deal with this, in sequence, not throwing it into one big box and seeing the end, before you have actually begun.

I suggest to limit your research at this point, other than what pertains to the upcoming biopsy. Get the results first, if its negative, then you can sigh a big sigh of relief. If positive, then it will start the next step in the process. Bascially saying, don't get way ahead of yourself, it will only increase your fear and will be non-productive.

We are here for you, to help you work through all these thoughts in your head, but let's see if you even need to be here first. If you do, heaven forbid, then you have hooked into a world of good people and resources here, well experienced with almost any aspect of prostate cancer, its treatments, side effects, etc.

Good luck to you, and please keep us well posted, hoping you will be just a visitor here, but if you end up being a PC Brother, you will be in good company.

David in S.C.
Posted 8/8/2012 5:40 PM (GMT 0)
Bruce, your concerns are not unreasonable and most all of us have had some degree of angst with which to deal.  Hopefully yours will go away after the biopsy and all will be well.

As others have said, even if you do get a cancer diagnosis it is far from a death sentence.  Depending on the biopsy results and other health issues, there are many ways of dealing with the cancer...don't jump to anything early...you will want to do your homework and will find a lot of help and advice right here on this forum.

So, take a deep breath, get the biopsy, then come back here with your detailed results and get some help this is in addition to your doctor's advice. 

An important take away for you after your biopsy is to GET EDUCATED and be your own advocate.  You may have decisions to make and you will want to be well informed before making them.

Good luck and keep us informed.

Jim

Posted 8/8/2012 5:42 PM (GMT 0)
I agree with Purgatory. One step at a time. When hubby tried to jump straight to PC, his URO said, "we're not there yet". Also, take a break (from time to time) from google searches, you can go mad. I do remember where you are at right now, and it is a very scary place. I spent HOURS upon HOURS on-line, even more than my husband. At one point, I had him dead within a few years, and praying that I get to have him longer. Take Care.
Posted 8/8/2012 6:14 PM (GMT 0)
Yes, absolutely take a deep breath. If it's worst case, and you have pca, you have a disease with many treatment options and often very very manageable.
Posted 8/8/2012 6:53 PM (GMT 0)
Done with all the deep breaths?

I was diagnosed at your age and just completed a 34 mile, five day backpacking trip in Yellowstone last week. Sure I had a bit of leaking when I wasn't paying attention and lifted something heavy. No impact on the trip or my enjoyment of it. No one saw the stains on my underwear but me and I didn't share. I've already started to figure out next years trip. I"m pretty confident that my stats are far worse then yours will be.

My brother, diagnosed on his 50th birthday, with subsequent robotic surgery, celebrated his 52nd by hiking 20 miles from his home to the beach on Saturday. (He has told me in the past that trampolines are not something for someone without excellent control.)

I've a friend (radiation for PCa not surgery) who only quit long distance bike riding because he injured too many other parts of his body and 60 doesn't bounce like 16.

So, get your biopsy. Get treated if necessary.
Let me know and I'll point you to some things only 0.05% of the visitors to Yellowstone ever get to see. You'll have to work for it though. Even the rangers say you have to earn these views.
Posted 8/8/2012 7:24 PM (GMT 0)

Greetings. You have come to a good place whether you have pc or not. If needed ,you will find  helpful knowledge and much

hope at this site. This happens to be my one year anniversary of my Robotic surgery . (I'm from Il. but traveled to Henry Ford in

Detroit for surgery. )

 By just being here now, you are ahead of where I was a year ago. It took us a couple of months after surgery to fine this site.

My wife and I just returned from a week of camping in MI after purchasing an RV and a canoe. What fun we had!!

Life is good and yours will be too!

Jim and Marie

Posted 8/8/2012 7:30 PM (GMT 0)
Oh, man, does your post sound familiar.

Sure, it's good advice to relax and take a deep breath, but you sound just like me and for many of us that advice is meaningless when we are in the panic stage. My fear started when my PSA got suddenly elevated and as I said, I started doing the inquiries/research at that time. When did I relax? It was after dx. when I came up with a plan of action.

But, let me mention one thing and I hope it helps. MOST folks who have surgery regain continence. I was leaky for a few weeks (always wondered what that was like; no fun). But it never got horrendous and I regained 100% continence very quickly. That is the case for most of us. VERY few are wearing/changing pads. But you are a sample of one. All I can say is that the odds are with you.

Let me tell you what I did. When I got the bad news, after falling apart for a day, I made an appointment with the Umich Comprehensive Cancer Center. I spoke with a surgeon and a radiology expert. I had a 3rd appointment with a medical oncologist, but I cancelled that at the last minute because the other two did a superb job of answering all my questions that I had prepared. The next day I had an appointment with a second surgeon.

I chose surgery but others will give very cogent arguments for radiation. So, gather as much information as possible. If you do end up choosing surgery, find the best most experienced surgeon you can. The key is the excellence/experience of the surgeon. I did prefer robotics but would have done open, whichever surgeon was the best.

Where are you located? Is there a major cancer center in your area? Mine was 125 miles away, but well worth it.

Keep in mind at this point you have no diagnosis so maybe you will get good news.

Mel

Posted 8/8/2012 8:40 PM (GMT 0)
I think you should be focusing on what a pain and annoyance the biopsy is going to be. The other stuff will follow in time. First you need a biopsy report. Without knowing what you've got, it's all speculation.

So I'd say, stop searching the internet and plan that kayak trip. I'll bet you'll be around and in good shape to do that.

Let us know the biopsy results and then we can scary you good with your options.
Posted 8/8/2012 8:53 PM (GMT 0)
Bruce,

Sorry you had to come find us. Dealing with this news will definitely re-arrange priorities - it certainly did for me. However, life can and many times does return to a reasonable norm despite this ugly disease.

Two years ago I took my older son to the mountains, oblivious to what would happen in less than a year. I'm now about 15 months down the journey you are anticipating you might have to take. Last year this time my continence recovery was still a work in progress. In a couple weeks my younger teen son and I are going backpacking in the Rockies. In a couple more years, the lost summer in between the two trips will likely be just a reminder to make every day count.

Time can slow to a crawl when you are in what seems to be a bad dream. If you are one of the many who are successfully treated, that bad dream will be a short span once life begins moving normally again.

Best to you!

Explorer
Posted 8/8/2012 9:38 PM (GMT 0)
Bruce,
For me, the biopsy was a piece of cake. The only thing I ever felt was a very slight sting, not even pain, when the anesthesia needle went through the rectum wall. I heard the (12) samples being taken, but never felt one of them. I was out the door and back driving my car in 45 minutes, and that was all there was to it. I know others had a different experience, but that was mine. Hopefully, that will by yours, too, and the results will be negative, which they are about 70% of the time, and then you can relax completely. Others have assured you about your prospects should you be one of us unlucky ones, and come on back if that turns out to be the case. But you're not even there yet, so stop dwelling on the worst case scenarios (very natural to do) and rejoin the rest of your life. ("Today has enough problems of its own, don't waste time worrying about tomorrow's.") I sincerely hope you'll never bother us again!
Henry
P.S. I never finished the first pack of depends I bought, needed them only for a few days.
Posted 8/9/2012 1:40 AM (GMT 0)
I won't repeat all of what has already been said, but will second it all.

I'm sure you realize it by now, but you are very fortunate to have found this forum so early for your situation. The advice and experience of the guys on this forum is immense. Sometimes they have different opinions, but you will always know what your options are, what questions to ask and what to be thinking about.
Posted 8/9/2012 2:46 AM (GMT 0)
Hello Bruce,

We're all sorry you're going through this. You don't know it yet, but it's not the end of the world. Even many worst cases live for years and die of other things. It's a little too early to kiss off life. However, my comment is mainly to address your fear of incontinence. When it comes to leaking, I'm a champ. I don't keep track of how many pads I go though in a day, as I don't really care, but it's a half dozen or more. It really affects my life very little. I leak, the pad soaks it up, end of story. When I haven't been able to change the pad for awhile, it feels wet, but it doesn't show. Sometimes the edge of the underwear dampens, but it doesn't show. Inconvenient, slightly uncomfortable? Sometimes. Life changing? Hell NO. It takes a minute or 2 to duck into a public restroom and change a pad. My life changes since leaking are as follows: 1. Can I get an aisle seat on this flight? 2. "Honey, you can still see the screen if we sit closer to the aisle." I kayak, hike, bike, and do everything else I did. I just use (public) bathrooms way more often. I could always have surgery, but I'm not interested. My life is fine just the way it is. One other note...you're young and, anecdotally speaking, the younger guys seem to have way less ED and incontinence problems than the over 65 group. Good luck with your biopsy, and welcome.
Posted 8/9/2012 3:24 AM (GMT 0)
Bruce,
First, I hope that you don't have PC. If you do, then there are many ways of dealing with it and time to choose the right treatment for you. As far as incontinence, most of us have regained it within few weeks or few months, some were continent immediately. All the plans you have are still possible. I'm 70 years old and feel better physically than I did before my surgery. I'm more active and in better shape. So relax.
Posted 8/9/2012 3:40 AM (GMT 0)
Everyone in this forum understands exactly where you are...we have been there.
Spend time on this site and the referrals to other sites that HW members pass on to you.
Check out my "signature"...
All is well. Fully continent and I do not have ED.
Read Walsh's book IF your biopsy shows PC and ask any question that comes to mind.
This is a great place to get information that is actionable.
Hang in there, we're pulling for you!
Posted 8/9/2012 3:54 AM (GMT 0)
Sorry to hear abpout your news.  Listen to those here and be careful on the internet.  My doctor gave me a few sites and this was one but otherwise he said stay off the internet serching.  Listen to what he tells you and take it one day at a times. (I know easier said than done)

The biopsy is not too bad and the waiting is worse than the actual procedure. The people here you can trust...But not everything you read searching....so be wise if not you'll juts add worry..

Prayers going out and hopfully all your results are good...

Hawk

Posted 8/9/2012 11:17 PM (GMT 0)
Bruce-
To introduce myself and my husband to you, I am Susan and my husband is Michael. I am 42 and Michael is 41. He was diagnosed with PCa when he was 39, one of the youngest ones on this site. We have 2 boys, the oldest will turn 11 next month and the youngest is 8. Having the biopsy was a no brainer for Michael (and me) We needed to know what we were looking at. The biopsy itself didnt take very long, they numb you and then take samples, the amount of samples is up to the Dr. You will be slightly sore once the numb wears off, but wasn't painful. The one thing I would warn you about is that your ejaculate will be bloody, this is blood from the procedure and cant take weeks to completely absorb or remove itself, nothing to be concerned about but it is alarming. Waiting for the results was the hardest part. Even finding out there were cancer cells found, we never questioned having the biopsy. Once you get through that part, you and your wife, will be shocked, angry, numb, confused. Take the info, talk it out with your wife, get her input, because IT WILL effect her as well, and then make YOUR decision. You will most likely have time to find the right DR, educate yourself and end up making the best decision for you. You will find that every person on here has had a different experience with their cancer, ask the questions, listen to the answers and then decide YOUR course of action. If I havent been clear......make the choice that is best for you and your wife ;-)

Write down all the questions that you want to ask, take the notebook with you and if your wife goes with you, have her write the answers. I would suggest having your wife with you, if she can go. You will be getting lots of information, and it helps to have a second set of ears, and then a record of the answers. We started a notebook which we refer to "the cancer book" you arent there yet, but you could just call it something else. Keep all your appts, the questions, answers, referrals, side effects. You arent even going to know what questions to ask, so be prepared to change your line of thinking and ask anything you dont understand.

As a wife, please be aware that your wife is scared too. She, like you, fears that she is going to lose you. Lean on each other, share your fears, and your thoughts, you both have every right to be angry and sad. Share those feelings. Do not do this as an individual but as a couple. Dont shut her out.

As for quality of life after surgery....Michael works full-time, he is a cub scout leader, he is an NRA instructor, he goes shooting, he rides his motorcycle and participates in the Patriot Riders (motorcycle group who protects funerals of servicemen). He has no urine/leaking problems, but does suffer from some ED, we work on this. Other than the ED, he has no issues and his life is as it was before the diagnosis. I cant promise you that your situation will be the same or better than his, but chances are pretty good you are going to be around for a long time.

Take a breath, kiss your wife, spend some time with your son and then take one day and one issue at a time. The people (men and women) on this site are the best you will find ANYWHERE. Share anything, ask any questions, we will be here to answer and support.

Hope this helps.
Susan
Posted 8/10/2012 7:44 PM (GMT 0)
Hello!

Let me say, THANK YOU so very much!  I am in awe of each response, and humbled by the kindness I received from your kind words.

I go in for my biopsy on Tueday morning.  I am told to expect the results in 3 - 5 days.  I will let you know as soon as I get the results.

I honestly dont know how I will handle the "3 - 5" day waiting period. 

I know I will pray, and those prayers of gratitude will include each of you.

Be well, and I will return with any news, asap.

Thank you!

Bruce

Posted 8/10/2012 8:14 PM (GMT 0)
Bruce

How about - Go Live! Do all the stuff you enjoy.

Such as:
With your young teenager learn to kayak together, white water rafting (again), some hiking, and continue our goal of riding as many roller coasters as possible.

Go work in your garden -

Look next to you? See that beautiful lady at your side? Flirt! A lot!

1. Flirting - Yes that is a good thing. It has been scientifically proven after dozens of rigid studies 8 times a day is the daily minimum requirement. However science has been unable to determine the specific times of day - though through diligent study the flirting must be spread out over the day. (ok I made up the scientifically proven part)

2. Flowers! - Yes! Frequently! When you go to the grocery store to get whatever pick up a nice assortment of flowers, bring then home and present to your lady - and flirt.

3. Tell her she has a nice a*s - Not really sure why this line works so well especially as I use it at least once a day . When I tell her, my lady still manages a blush and a "Ohhh Husband" as she struts about with a big smile on her face and a sparkle in her eyes. (see how this works into the daily minimum requirement of flirting?)

4. When you go out anyplace - Hold her hand. ( again works into the daily minimum requirement of flirting)

5. Last thing before you two go to sleep - tell her that you love her , hug and kiss her. (yup works into the daily minimum requirement of flirting)

6. First thing in the morning when you are both awake - tell her that you love her, hug and kiss her. (yes - flirting - notice a trend here?)

7. Before you leave the house for anything - Give her a kiss and a hug and tell her you love her (ayup - flirting! we are on a roll!)

8. First thing when you return to the house - think about it - Right! Give her a kiss and a hug and tell her you love her (more flirting!)

Go for it brother! Bring a smile to your wife's face and a sparkle to her eyes.

HUGS!

We will beat this crap!

Bud

PS: Oh and the all important do or die - Toilet seat UP first. DOWN when done. Violation of this negates all the day(s) flirting.
Posted 8/10/2012 8:47 PM (GMT 0)
Hi Bruce,

The waiting period for biopsy results is tough. I remember thinking they should offer some sort of counseling. We kept busy as much as we could. It was during this period that I truly backed off the internet. Take a break from pc, if you can following your biopsy. Hubby and me spent a lot of time at our favorite sushi spot. Prayers your way.
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