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Posted 2/20/2008 11:34 PM (GMT 0)
I have laporscopic surgery scheduled for April 2 in St.Louis at Barnes Hospital for removal of my prostrate. Doctor is very upbeat and 90% sure it is contained to the prostrate. Of twelve biopsies taken only 1 showed cancer with a gleason score of 3+4=7. My PSA is at 4.0 and has been at that level for a couple of years now. I feel assured that the removal is the best option being I am 56 yrs. of age. I am concerned about the post op. side affects but I guess I will deal with that as I have to. I guess one big question I have is telling people. I have been bouncing this back and forth in my head since I learned of my cancer a month ago. Obviously my wife knows and my immediate family and a couple of close trustworthy friends. I have told my boss,  but I am hesitant to tell my co-workers and people of my community. I live in a small community where everybody knows everybody. Did anyone else have these feelings I am having? I have thought about telling people I am having surgery but for something else besides prostrate removal as I am sure some, if they do not already know, will run to the internet to look up prostrate removal and read about the side effects. I'm just not sure I want people to know. Maybe I am wrong and tell me if you think so but being incontinent and having ED is for me right now a little embarrassing. Is this something you guys that have had this done went through? My wife thinks I should let people know and not keep it to myself. So does my boss. But I am just not sure. I would like your opinions. I know that if I do tell them it will be my last day before I have surgery. Being able to go to work as usual and not having to answer questions about it has been good for me as it has kept things at work... well normal.
Posted 2/20/2008 11:52 PM (GMT 0)
I understand completely and went through the same thoughts as you. I too live in a very small town were one knows all. I was angery at everyone like it was their fault. And I had even thought about just staying in the house. I held off telling for a while until I made a decision on the surgery. Then I came to the conclusion that once told, I would feel better and that was exactly right. And then the number of people that came forward that I had no idea who went threw the same thing. Then like the others here I took a proactive attack oh all I knew to make sure they had the PSA test. Feel good about your decision and let it show when you tell people.

You will find you have a lot of friends.
Posted 2/21/2008 12:42 AM (GMT 0)
I don't live in a small town, but I had the same concerns.
The only folks who really knew where my boss, wife and kids. In work, I only told folks that I was going to be on medical leave. Outside of work, if anyone specifically questioned what was wrong, they I told them (think I only told 3 folks).
Since my medical leave was really about CANCER, I think folks generally focus on the disease - not the side effects.
I will be going back to work in two weeks, at that time, I will have no hesitations in anyone that I beat the "Big C". If fact, I will proudly say that I beat it and will stress to others the importance of early detection.
If anyone brings up the side effects, I'll just tell them that they are just short term (no one has to know how long "short term" really is).

You got to put a "positive" spin on it. :-)
Posted 2/21/2008 2:38 AM (GMT 0)
Everybody reacts differently. I for one told and continue to tell everyone I can. My objective is to get as many men as possible to get tested.
That said, I understand why others don't want to talk about it.....
Posted 2/21/2008 2:53 AM (GMT 0)
Sparkymo,
I had the same doubts you are having now. I made the decision not to keep it a secret, and I'm glad I did. I found a wealth of support, good wishes, and most importantly a number of acquaintances and friends who have the disease. Many of these people I never knew were sick. They along with my wonderful new friends on this forum have been able to answer questions, offer advice, and tell me what to expect as I move along in this journey. I think it would have been immensely harder for me to cope if I had kept it a secret. Everyone's different and I'm not saying it's all good. You'll have to deal with those well-meant but ignorant comments like, "If you're going to get a cancer you picked the right one to get." But for me, the positives I've received have far outweighed the negatives. BTW the "side effects" I'm going through almost never come up (sorry bad choice of words) in conversations about Prostate Cancer. Just my $0.02 worth.
Good luck with whatever you decide!
Best,
Mike
Posted 2/21/2008 3:32 AM (GMT 0)
Hi Sparkymo:  Your reaction is similar to mine and to many of us guys when we were first diagnosed and on our way to making our treatment decisions.

First you have the shock.  Then you get the "I don't want anyone to know" feeling.  For me, I didn't want anyone to know because I was afraid that my relatives, friends, neighbors co-workers etc. would be looking at me in a different way because I had "The Big C."

To make a long story short, I decided to let the word hit the street and I've never regretted it.  All of a sudden -- out of the woodwork -- came stories from people I knew whose relatives had been through the PCa process, along with referrals to those relatives, which gave me a chance to talk to other guys who had been in my boots.  It was invaluable to me at the time.  I found out that my newest brother-in-law had had his prostate out six years earlier.  And my cousin's husband had his out four years earlier.  And my largest client's father-in-law had had his out six months earlier!!  These guys all talked to me and were a wealth of info., as well as a source of confidence for me.

Don't keep it a secret Sparky.  Believe me, no one in your circle of friends and co-workers is going to harp on how you are doing in the continence or erectile departments after your surgery.  All they'll want is to see is you recover and get back back to your normal routine.

It'll happen.

Best to ya,

Tom 

Posted 2/21/2008 4:21 AM (GMT 0)
    I figured if I had to deal with all of this I might as well just be open with it.  Let everyone know I had the cancer and beat it.  But also let them know things don't always go easy for everyone!

    I have always taken most things light hearted....so I guess it is just how I deal with it.

    You have to do what is right for you.

    Good Luck

    KW

Posted 2/21/2008 4:34 AM (GMT 0)
Your feelings and fears are quite normal and, as you can see, quite common. One of the wisest things i was told at the start of this journey was to allow myself to open up to those around me and let them know what was going on. Several of the guys have mentioned that the support they found was wonderful. One of the BIGGEST silver linings in all of this was discovering how much people cared. It is something to treasure after all the hoopla is past. I now have wonderful, much deeper relationships with so many people. Reach out to people and accept their help. It will help you emotionally, mentally, and physically.
Also, I hate to say it, but you've already lost control of the information. Once you tell anyone, you no longer have control over where it goes. Imagine the stress you will experience over fretting about who knows? The paranoia that people might know, or be talking about you. That kind of thing is damaging in the extreme to your psyche. Let it go. Tell people, then all that fear will be gone.

It's just not as big a deal as you might think that people know the side affects. you can also say that you are lucky and things are just fine - if anyone would ever be rude enough to bring it up. you will mostly find people are wonderful. I did.
Paul
Posted 2/21/2008 7:06 AM (GMT 0)

Hi Sparkymo:

Sorry to hear about your cancer. You have found the right place for support & healing.  As for you question on telling others I think it comes down to what feels right for you. A few years back I had some female medical issues I did not really want to discuss with my friends & family and when I told this to Rick he simply responded with " Honey you can tell them if you want to or if you want to keep it just between us thats fine too but remember the truth will always set you free" That made me think about it a little differently. Eventually when I was ready to discuss it we did and it all worked out fine.

Good Luck & Warm wishes

Diana

Posted 2/21/2008 7:41 AM (GMT 0)
SparkyMo,

I encourage you to take your time.  You may decide to become the "Lance Armstrong" for the fight against Prostrate Cancer.  News will travel very fast in a small town and that may move you to being more open than I chose to be.
I took my time deciding how to share my fight:

I only told 12 of the 100s of people I know at Church.  (My Prayer Group kept it confidential.)
I only told three people of the 100s I know at work. (My bosses kept it confidential.)
I didn't tell any of the 100s of customers I have that have known me for decades.
I didn't tell any neighbors nor most of my friends.
I told none of my 100s of former and current students (all children) at Church.

I told everyone in my family - especially my 3 male siblings as they are in a higher risk group than "father-to-son" with my diagnosis.  
I waited until after the biopsy to tell most famly members.
I didn't see any reason to panic so many (I have a LARGE family.).
I also did not want a mob of visitors in the hospital.  (Turning a well-meaning visitor away almost always hurts their feelings.) 
I did immediately tell enough relatives to have the support I needed.

As for not sharing with the literally thousands of people I deal with each week, I just didn't feel like trying to explain the male reproductive system to everyone that asked.
I also didn't want to spend so much time dwelling on the disease as well-meaning people made inquiries to show real concern.

I was suddenly absent for a month and couldn't lift at work for quite some time.
So I did have to say I had some surgery.  I just talked about my past hernia repair as the cause of the surgery.  This was to a certain extent true as Robotic DaVinci had to be abandoned for open surgery due to adhesions from the previous surgeries.
Even still, dozens of times I had to say I didn't want to talk about it to well-meaning questioners.

With strangers and in confidential situations, I do frequently share.  Two days ago, a lady shared with me of her father's PC.  I was completely open with her. 
Also, my Bio-feedback Therapist has some of her newby PC patients contact me for my experiences and encouragement.  My pastor has newby PC patients in our church contact me.  In all cases, I also refer them to this site!

I am wearing a blue wristband.  No one has asked me about it but when they do, I will share knowledge without necessarily revealing my surgery.  I will decide in each case.

While I personally feel my situtation calls me to discretion, I do admire and am grateful for those of you that are publicly championing this fight.

CCedar
ICTHUS!
Posted 2/21/2008 11:54 AM (GMT 0)
Hi Sparkymo'

A fellow Missourian here, I see you are going to a good hospital to have your surgery done, good luck with it. I'm fairly sure that everyone on this forum has gone through the same feelings your are having now, just work your way through them. I didn't try to hide my cancer, in fact in my small town the more you try to hide the worse it can be. I was forthright with mine and told my pastor and was placed on our prayer list.....that generated interest and before long the whole congregation knew what was going on with me. Shortly after that most of the town knew and really it was good, because many men that I knew but never knew they had prostate cancer came forward and told me their stories and offered advice.....everyday several people ask me how I'm doing. Anyway, welcome to this forum, lots of information here and good compassionate people. Feel free to post anything remotely related to prostate cancer and I guarantee you that you will receive a reponse....again good luck in your journey. jwb.
Posted 2/21/2008 2:04 PM (GMT 0)
Hi, SparkyMo - we were in the CedarChopper group. Our thoughts at first were - by telling everyone in our small community - it would just give them something to talk about. Then, they'd be staring at the crotch wondering if my husband was a dribbling, sexless old fool. Most wouldn't have wanted to hear - oh, everything is going to be "normal" again because of the latest procedures.

We told a close friend and my husband's brother. That was it. Months later, the time was just right to start talking about it, starting with my folks. We've helped a few others along the way and will continue to do so as the occasion arises. We're happy and proud to discuss any and all of the details, in public or private at this point.

You'll know when the time is right. Once you get there, you'll see that it's a hard-earned "gift" to share at your discretion and others will be handed to you so you can offer your knowledge, support, and advice.
Posted 2/21/2008 4:52 PM (GMT 0)
Hi Greenacres. I was wondering. Did you wait untill after the operation and was well on the road to recovery before you told others?

Posted 2/21/2008 5:50 PM (GMT 0)
Sparkymo - we told my husband's brother as soon as we knew we had cancer. And one neighbor who is an emergency room doc. We discussed the process between the two of us in detail and decided not telling was best for us. The surgery was in August and it wasn't until December that we told my folks. I think we told three of our closest neighbors a couple of months or so following surgery, now that I think about it. They mowed our yard for us.

When it comes up, we don't hesitate to let people know, but I guess we're still not shouting it out to the neighborhood.

It wasn't out of hiding it so much as just staying out of the local gossip loop, I think.

Now - it is what it is and we're just thrilled to be in the all clear, those things don't matter.

But, I will say now that we've spread the news further out among friends and other family members, it's good to be able to say everything is back to near-normal, rather than being at the in-between recovery stage.
Posted 2/21/2008 9:14 PM (GMT 0)

Welcome to the forum, Sparky Mo!  Glad that you have joined us.  There are many wonderful folks who post/read here and have a wealth of personal experience and medical knowledge across the prostate cancer spectrum.

At first, I did not tell anyone about my prostate cancer diagnosis except for my family, select friends and my boss.  Once we had researched treatment options and selected surgery as our choice, I let others know.

I'm glad that I have been open about prostate cancer because I have had a number of opportunities to talk to others about this disease and to provide some personal experience and comfort to others who have been diagnosed with this.

I'm on a call list at my urologist's office if a man who has been diagnosed with prostate cancer wants to talk to someone who has had prostate cancer.

My wife and I were plenty fearful for a long time after I was diagnosed and my knees still shake when it's time for another PSA check. 

Hope you'll continue to post here and share your own prostate cancer journey with us.  Take care and hang in there...Tim

Posted 2/21/2008 10:33 PM (GMT 0)
Hi Sparkymo! Pretty amazing about your stats- I am 58, had a Gleason of 7 (3 and 4 or 4 and 3, can't remember), had a PSA of 4.6, and I live in Missouri! My prostate was removed at St. Lukes last June.  The day I was diagnosed, I told my boss and a close co-worker, but within a couple of days I decided to just let the word get out. And I determined right away it was cool.  It seems like every guy I came across either had prostate cancer, had a relative who had prostate cancer, or knew some one who did!  It became like a big fraternity to me, and a support group that is huge! I still have ED and incontinence (the ED thing will come around, and I'm getting the incontinence fixed), but it has become easy to talk about because this is all so common!  Let it out. It will be fine! Oh, and your cancer, like mine is, will soon be gone! 

Posted 2/22/2008 6:48 AM (GMT 0)
Hi ~  sparkymo & Loved Ones…   W elcome     to…    ~ HealingWell ~   and   A    “ Special ”    Warm Welcome   to   You !   Knowledge gives us POWER….   POWER takes away the fear.   ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~   Click on the link just below for important information that will help you ~ help us!!   Welcome New Members ~ to HealingWell   The information (link) listed above is to help you get started on your journey. It is a journey best traveled with friends. Welcome ~ New Friend from all the members here... on HealingWell.com   v       bluebird ~   Moderator for Prostate Cancer Forum http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg   v       IdahoSurvivor ~   Moderator for Prostate Cancer Forum http://farm2.static.flickr.com/1160/1313099593_9f819e3ff8.jpg   v       TC-LasVegas ~   Moderator for Prostate Cancer Forum Post Edited (TC-LasVegas) : 2/22/2008 12:59:06 AM (GMT-7)
Posted 2/22/2008 7:06 AM (GMT 0)
Hi sparkymo,
I can't tell you enough about how reading, learning, and studying about this disease has helped me. For me though it completes it by my being open about it. Anybody asks me about what I have experienced, they're going to get a straight answer. The way I figure it is that getting cancer and having to do all the things listed below to my body is nothing to be ashamed of. If they want to know the side effects they can read up on them or save themselves some time and ask me. By knowing this disease all too intimately, what good is keeping that inside? Yes, I thought about should I be open about it or should I be silent, but I'm glad I chose to be open. While many don't understand this thing fully, for the most part it's been a very positive response from people. And I might just convince one person to get checked. All that said you would not be at fault for handling it any way you wish. And you can come here when you need that support you might need once in a while. God Bless. And welcome!

Tony
Posted 2/22/2008 11:32 PM (GMT 0)

Most of us I think have had the same feelings as you. I was 56 when diagnosed very similar numbers Gleason 7 PSA 4.3. Had DaVinci surgery 10/12/2006. Everything fine so far in all departments peeing great, and sex is up when needed as of 8/12/2007.  Anyway I hope you do share with the people around you. Everyone is going to know anyway, and those that really care about you really need to know. You may be surprised at the number of guys that crawl out of the woodwork that have had the same thing. If any idiot like one of my uncles that has a large prostate and is running over a 4 PSA and won't get a biopsy says stupid things like "I just don't want to end up nuetered."  Just write them off as stupid because they don't know Jack and are nothing but Fools with their heads up there arse! From your numbers and what the doctor says you most likely are going to be just fine. That is not say you won't be challenged with this because you will, but isn't that life? God bless you and let us know how you are doing this is a wonderful forum for support and encouragment.

Posted 2/25/2008 9:49 PM (GMT 0)
Hey Dude,
My own tale was that I held off putting out the word until I knew what the story was...the CT scan, and the final diagnostic stuff so that could finish the story with the prognosis and technique. The biggest issue was getting through Christmas without putting a pall on the season for those who cared.

So, tomorrow I go in for Brachy (magnsium citrate wouldn't be half bad with a good shot of gin in it) and I have a radiation trefoil tattooed on my arm, and I can tell all who ask to get themselves tested. I mean, I'm not going to go up to strangers and ask when they last got what I call the 'Fickle Finger of Fate'...but I'm not going out of my way to hide my circumstances, either.

So getting my prostate mapped mightn't be considered polite dinner conversation, but no shame in it either.

And as has been said, once the subject comes up, you'd be surprised how many guys have a story they've been sitting on themselves (pun sort of intended).

Good luck to ya!
Posted 2/25/2008 11:49 PM (GMT 0)
While I didn't put it on the air, I did tell a lot of people. I sat down at my computer and let about 250 acquaintances know. Some were high school classmates, others political party affiliates, and coach tour members, email buddies,etc., plus several people I eat breakfast with a couple times a week. To the end every one has been supportive. There are a few who found out that didn't have a clue about what it involved. Those I either educated or marked off as too illiterate to educate. On the whole I'm glad I decided to open up to others. Uncle Dan
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