Not telling people I have cancer

So far, other than you all and my wife, I have not said anything to anyone about having PC.  I want to at least wait until after my appointment next week when I can get some answers and a scale of my cancer and have a better idea of where I stand and what my options are.  But even after that, I'm not sure I want to tell anyone.  I'm a private person by nature, live in a small community  and I don't really want everyone coming up to me and saying how sorry they are.  I don't want to affect my kids grades in school (they will be out in 8 weeks for the summer).   I know that other thoughts on my dealings with PS have changed in this short time. 

Does or did anyone else feel like that? 

Your thoughts will keep changing.

At first i wanted to be private about my diagnosis. But that was short lived. I was learning that by just speaking up I had the ability in have an impact with others. I am young and few expect to hear me say that I am a four survivor of prostate cancer.

But each has their reasons. One day when our groups are as strong as the Susan G Komen Foundation it will be because men found out that they could talk about prostate cancer.

Tony

I can see why you might want to not say much about it until after next week. 

I made no secret of the fact that I'd been diagnosed with prostate cancer.  It's not something to be ashamed of.  And I was rewarded with a veritable outpouring of emotional support that was very helpful to me in dealing with the whole situation.  I have six siblings and a lot of extended family, and they were especially helpful and supportive.  I'm also a fairly private person, but it's at times like this that we perhaps gain a whole new realization of the level of caring that people can exhibit in times of crisis.  As for my grown son and daughter...they both would have been very offended if I had kept this a secret from them.  Good luck in whatever you decide.

It's a very funny and not so funny issue. I analogize disclosing cancer to friends to getting divorced. You lose some in the process. I have found that people, unfortunately, don't want the burden of other people's problems. I also have found that people just don't know what to say or do. They take their leads from us. "If he wants to talk about it he would, so if he doesn't mention it then we won't either." Or, "My father (age 70+) had the disease and everything was fine and you'll be fine too." Or, "How are you feeling?" Or, "What's going on with your cancer--I never had my PSA tested. Why did they do the test?"

My wife and I have talked about all the reactons and nonreactions and try to make sense out of all of it, but it's a futile endeavor. You just don't know how people think and react. My lastest problem is those that don't have the slightest idea about the disease and simply right you off for dead. What does one do? I've decided that those that ask about my circumstance are the ones that care most. The ones that assume that cancer is automatic death do not have my best interests at hand. Nor do those that think it's a sublime cancer that doesn't kill. And everyone else is in the middle. From a professional and personal standpoint, I can understand based on experience how one would elect to keep quite. The problem is that internalizing such a big issue probably leads to more problems than those stated above.

In my case I told my wife first. Then I called a family meeting and told my kids. I called my parents and told them. I told several of the guys at church who pointed out other guys that have been through this. In my opinion telling others about it is therapeutic.

Everyone has their own way to dealing with this thing. I got the call from the Uro on my way home from work and I was in a carpool. Well they new what my news was. Shortly after that the secret was out.

I never had a problem with the new being out and my Boss and friends and co-workers were a great support. I am thankful to all of them

My family could not have been better.

Cajun Jeff

Hey Gleason,

I understand all too well. I am still in the PCa closet. I am a self-employed, private contractor, and my coworkers and customers do not know.
Heck, my mom in Florida doesn't know! Only a very few, very close friends and neighbors know and they are the ones that I needed for real support - changing the mower deck, plowing the driveway, moving my trailer, etc.
I did not want any potential customers to think I was "weak or damaged goods". (Silly, I know) . I also did not want to have any excuse for not performing as expected. "Oh... no wonder he didn't get that project to work - he has a lot on his mind." Everyone is different, but for me, not having a way out made me do what needed to be done.

I figure I can always tell if I need to, but once the Genie is out of the bottle it can never be put back in, so I vent here.

Hey guys! I have PCA and a Limp Biskut. And I was wearing pee pads until I had my crank yanked!
Oh... that is so refreshing!

Jeff

G6,

I told family, friends and coworkers as soon as I was diagnosed...saw no reason to hide it. What I learned was that almost everybody knows someone else who has been treated for PC. Turned out to be helpful in finding some guys (other than here on HW) to talk to about their experiences.

That said, one thing is apparent after more than a year on HW. Everyone here has a different mental, physical, and emotional makeup. You have to do what is most comfortable for you. I do, however, agree with Tudpock's point above....expand the circle of knowedge to some degree for your wife's sake.

Joe

I only told my kids and in-laws and 4 of my closest friends until after the surgery.After that,I didn't care who knew. I live in a small town so it didn't take long to get around.
I kept my friends informed through little tidbits on Facebook. Never said it pluntly,so it made keeping friends up to date interesting.
When the time is right for you to inform people you will now.

Well, I felt that way for a few days. I didn't want anyone knowing, didn't want false condolences, or the oh, I'm sorry routine played upon me.
Then I felt the whole world should know. Since my PC was found by accident with no indication of a high PSA, I know this monster can sneak up on anybody.
My family is not those who speak openly about medical problems. That being said, it was difficult to inform them of my condition. I started with my folks, squeezing both of them for medical histories. None of the males has had a PC history. Breast cancer does run on my fathers side of the family. It affected his mother and sister, I am concerned for my sister.
My brother was next on list, he's a bit more diligent about his health then I am. His last check up when very well and no problems were found. He now knows to keep a close eye on things.
Through the family grape vines, word has spread of my condition to my Brother-in Laws, Cousins, Uncles. I've told them to get checked early and often.
I've passed the word along on web sites for my shipmates. A number of us were exposed to things the body shouldn't come in contact with. (Asbestos, Non-Skid, Aviation fuels, lubricants, etc) Cancers seem to be the end result of these exposures.
As for close friends, some know but the majority haven't been told. I want to live my life as I've done before. Telling some people would just push them away. You have to pick and choose who you think might benefit from your disclosure.

My boys are 9 and 7, we just found out in December and then had surgery the beginning of February. I knew as soon as my husband got the call, because he then immediately called and told me the news. We told our boys pretty quickly. The 7 year old, it didnt make sense to him, he just knew that Daddy had something big going on and that he was going to have surgery and it would be ok. The 9 year old, he had the preconceived ideas of cancer "get cancer and die" he was very scared. He asked me many many times, "Is Daddy going to be ok?" The day after we told them, he had some free time in class and made his Dad a get well card. His teacher asked him what he was working on, he told the entire class "I am making a get well card for my Dad, he has cancer!" He goes to a small private school, so word got out very quickly. Lots of the teachers asked him lots of questions he didnt know the answer to (what kind of cancer, what treatment is he having.....) he then came home and had a very grown up conversation about cancer. He is a gifted and A student, but his grades did slide a bit, He got his first 70 ever! I contacted the school counselor and had her check in on him. Both of the boys teachers knew what was going on and kept their eye on them to make sure they werent acting out, or needed some support. Ultimately, they did great. Michael had his surgery and the boys were very supportive and loving. I wouldnt have it any other way, then telling them honestly about what was going on. With our kids, had we held off and told them months later, they would have been mad that we didnt tell them earlier. They needed to know, and learn how we deal with the "bumps" in the road. They both learned a lot about us, they learned a lot about how our family pulls together, they learned how important it is to communicate. They also learned that bad things happen as well as the good, and that when the bad comes you can handle it!

I too am a private person, and am text-book introverted. I did not enjoy having lots of people asking me how we are doing, is Michael having chemo (the question everyone seems to ask). But it was really nice that our family knew and we got lots of support from them. I could have passed on the "average" person knowing, but my son told his class and it went from there. He obviously needed to tell them, it is was ok with me, I can deal with what I feel is an intrusion if it helps support my kids.

You are the patient, and this is taking place in your body, but it is also effecting your wife and kids. Your wife may need to be able to get support from her friends and family. Due to her loyalty to you, she is probably not getting that need met. (just an assumption on my part) You may consider allowing her to get the support that she needs, but know that once she or you tell anyone else, EVERYONE will know.

I am whole-heartedly in the camp of disclosure. There will be people who ask and make comments that you would rather had just kept their mouths shut, but better than that will be the love and support that you will get from those closest to you. Give them the chance and the opportunity to love you when you need to be loved the most!

Just my thoughts!
Susan

Jeff,

I thought you would be the one to point out that this topic was the subject of Rex Morgan, MD, for months:

www.healingwell.com/community/default.aspx?f=35&m=1870340

that you started yourself! I think we'd agree that while it was good to raise the PCa topic with the public, Dr. Rex spent weeks just barely grazing the subject.

For myself, my kids had already had the experience of learning their mother, my wife, had breast cancer. At that time I remember going to my daughter's first grade class and reading them a book about a child whose mother has cancer. Several of the kids already knew about cancer from their own family experience. Others were familiar with being in a hospital. Anyway, when I was diagnosed many years later, the family was about as well-prepared as they could be. At work, I only told a few people. Word get around, but it didn't seem to go crazy. The few people who asked about my health did so with discretion and polite concern. Having said all that, I still don't reveal my real name even here at Healinwell. But, I think that's what they advise anyway.

DJ

DJ,

I enjoyed looking back at that thread. The December 5th post on page 8had a good summary of the 5 month daily comic.

'1) Politicians are a fickle, superficial lot and will change loyalties and emotions faster than a Vogue fashionista on amphetamines.
2) Women simply cannot be trusted. They can't keep a secret.
3) Prostate cancer is some vague Men's disease."

Getting back to the original poster. I explained my post RP two week absence by saying I was visiting my mom in Florida. No one was the wiser.
Another reason I didn't want people to know was the real possibility that I would be incontinent and have ED. I didn't want anyone to even think I was walking around with a wet noodle in my pants.

Cue the music: Macho, Macho Man.... (Yes, I do see the irony.)

Jeff

Post Edited (Worried Guy) : 4/6/2011 6:09:41 AM (GMT-6)