I haven't let too many people know about my PCa. Should I or shouldn't I?

Reading the forums this morning, an interesting point was brought up about speaking up, letting folks know you have PCa and getting others to think about being proactive in their own health monitoring, especially beginning at younger ages.

I'm 49 and recently diagnosed and I've chosen not to tell anyone about it.  Other than my wife, my doctors, and my boss at work, nobody else knows, not even family. 

I have no children and the only real family I have is my mother who lives 2000 miles away.  She's into her late 70's and I see no need to burden her with the news, especially since I'm of the opinion that my PCa is not a death sentence but rather just an unpleasant detour in my life that I'll get through.

I realize that the news will eventually get out at my work place, especially once I go into the hospital and I'm on medical leave for a few weeks.  I figure I'll deal with that issue once it arises.

How did you handle letting others know about you PCa?  Did you feel the need to let everyone know or did you prefer to keep the news within your 'inner circle'?  I'm primarily interested in how you let your friends and co-workers know, i.e., the people outside of your immediate family that you interact with on a daily basis.

John,

I have not really limited telling friends and family. There are too many signs that they would become concerned about had I not just gotten it out in the open early, and with the radiation as a known early on, it would have come out anyway. I just tell people outright.

I have had to very carefully limit who knows in my work environment, and that has presented complications, as well as enforce my absolute anonymous status on the board.

I did tell my Mom, and she actually came to sit in the hospital. Otherwise it would have been my neighbor, and I would have never heard the end of that. She would have eventually figured it out (Thanksgiving was the next month, and I was still forbidden to drive any distance).

I don't have kids / wife, so my immediate family is pretty small.

I personally talk to anyone and everyone about it. It isn't taboo for me. But everyone is different. Love your approach of seeing it only as a detour. That's healthy. And yeah. my mother became obsessed with it. So I think you know exactly what you're doing.

One word about work, you may tell one or two people only, but there is no better breading ground for gossip than an office. Be prepared to have people speaking behind your back. I knew they were at my office so I just started telling them all and letting them know it wa sno big deal.

i was guarded at first but now don't have a problem telling people when i deem appropriate.  i haven't told my mom yet....but may do so next month when i visit.

ed

 

I am a university professor. I had to notify the Division Chair and the Dean, since I would be missing a few weeks for the surgery.

I then sent an email to my entire department (mostly guys). I did not want folks to be whispering. I did not want rumors. It was easier just coming right out with it and moving on. I am glad I did that.

Mel

I have not told anyone except my wife. I have two kids, 12 and 16 and have not told them. They are in school and I do not want this to effect them and their grades as it affected me when I first found out. I live in a very small community and if one person found out, many would know within a short period of time. Obviously, I want my kids to find out from me and no one else. If I have surgery and not radiation, I will obviously need to tell them, but it will be after school is out for the summer and they will have the summer to digest it. If I have radiation, I may not tell anyone and just get on with my life. How could it benefit anyone by knowing that I had cancer, dealt with it and moved on other than if they had cancer at some point or made people more aware of PCa? I don't feel like I need the support (other than my wife and she is fine with no one knowing and the support I get here) especially from people that are not my close friends. Really what can they do for me? I'm a private person and don't want people coming up to me and saying how sorry they are for me, when they do not know much about PCa. People can say some pretty stupid things when they don't know what to say. I don't want people looking at me or treating me differently. It's really an all or nothing situation for me and so far I have been happy having not told anyone. Once the genie is out of the bottle there is no going back. I think it is a personal decision (as is most everything about PCa) and I can see both sides. I would like to help people become more aware of PCa, but right now, I'm having enough trouble dealing with all that is going on, gathering information and having to make a decision shortly on which treatment to pursue. As far as work, the small group that I work with know that I have something going on physically, but are respectful of my privacy and I have told them that I'm not ready to discuss the details at this point. We work on sensitive matters and people come into our office to vent and we have always had a "What happens in our office, stay in our office" policy, so I trust them not to gossip. So bottom line, I guess I'm being selfish by not spreading the news to make people aware, but I feel I'm doing what is right for me (okay. I guess that is the definition of being selfish! :) )

Hi: Telling people is probably the toughest decision. My husband was diagnosed in 2007. We immediately told our kids (they are adults), but my husband choose not to tell anyone else. It was a tough secret at times to keep and at the time I (wife) wasn't sure of keeping this a secret. Now 4 years later I totally understand his decision for him, he is a very private person and did and still does not want to talk about it to just anyone (we talk all the time). We are from a small community and when someone has cancer it seems everyone labels you as the person with cancer I don't thing they mean to be intrusive ,but it is so hard when everyone stops you on the street to talk about it. It's always on your mind as it is and than to have to have to talk about it all the time. It's just tough. My husband just recently told his family and close friends as things have progressed with the cancer and he is taking chemo so he had to take time off from his job. It was very hard for him to do. We have just told people he does not want to talk about it, he will talk about the weather etc., but not about the cancer.

In my husbands case he has had a rough time, don't get me wrong he is handling it very well, he's not depressed, he just is handling it in his own way and I think people need to understand that everyone needs to handle things in their own way and to accept and support that decision.

I thought this might be a good occasion to mention some of the famous people who have been diagnosed and treated for prostate cancer: General "Stormin" Norman Schwarzkopf, Harry Belafonte, Robert DeNiro, Senator Bob Dole, Louis Farrakhan, Rudy Giulani, Robert Goulet, John Kerry, Nelson Mandela, Roger Moore, Colin Powell, Desmond Tutu, Arnold Palmer, and others. 

Other famous men who succumbed to the disease, like Earl Woods (father of Tiger); Frank Zappa, Pierre Trudeau; Telly Savalas; Jerry Orbach; Alec Guinness; Robert Frost, Bill Bixby, and others.

I thought it might be worthwhile to list these names just to illustrate that in most cases, the fact that they've had prostate cancer quickly becomes a footnote, rather than the main thing that comes to  mind when we think of them.

If anyone is inclined to think "Poor Bill," when they meet me, I think I usually change their mind when I outwork them or kick their a** on the golf course. 

That said, I definitely understand that individual circumstances come into play when deciding whom to tell or not tell, and it always remains a very private decision.

Whom do you tell is your personal choice. When I was diagnosed in February, my intial reaction was denial and depression - why me. When I ovecame that partially, I told my colleagues and the dean (I teach Physics at an university) and some selected friend. I have joined a support group. Now I do not mind who knows.

Do whatever you feel comfortable with.

Like said above, its a personal decision, and no right or wrong answer.

I am an open book with people, the people know, the more I can people aware of not just PC, but living with Cancer in general.

My kids are adults, and are included in all areas of my life. If my kids were younger than high school age, I probably wouldn't have disclosed cancer, but just said daddy is sick, or something like that.

My grandchildren, ages 6 and 8, only recently know that Grand Pa has cancer. It was at their parent's discretion when and if they told them. All they knew was Granpa was real sick, and had lots of operations, etc.

One advantage out of being open about it, it does let the cat out of the bag, and can help keep down needless speculation and gossip. Also, it helps to expand one's support network. And finally, if one isnt careful, keeping closed mouth about something that serious can be a form of denialism, the old out of sight out of mind kind of thing.

Just my take.

I respect anyone's decision on this aspect of being a Cancer Patient.

David in SC

I forgot to add...

I feel very comforted by the prayer support I am getting. Through the select people I've told, I know that I'm on a number of prayer lists.

I did not make it public information. I only told a couple of people and swore them to secrecy. They were the ones I needed to rely upon for something. I did not tell people at work. They thought my three weeks was a vacation. I didn't even tell my mom! Why worry her? What would that have accomplished?

I figure you can always tell whenever you want. But once the news is out, like the Genie, you can't put it back in the bottle.

Jeff

By the way, I also believe that by "hiding in the PCa closet" I forced myself to get better faster. I felt I had to appear normal at all times and that took extra work.

Hey Sagittarian

It would be real hard to hide it from the wife. "Dear, What are those syringes doing in the refrigerator? "
"Oh, nothing. I just started slamming some smack during my latest two week trip to Bangkok. Relax. It's not Trimix."

I've heard that a Penisecotmy is way worse than a protatectomy - and that "surgery" is not covered by BCBS.

Jeff