Telling others about your PCa

I know this topic has been posted in the past, but that would have been at a time where it was not in my line of sight, so I decided to throw this out here again. 

The only people I have told about my PCa Dx are my wife, best friend, son (32 years old) and brother (49 years old).  I am the oldest of the siblings at 55, our sister is 50 and I told her as well when I met with my brother. 

My reasoning for telling my son and brother are of course obvious.  My son will be talking to his primary physician about his Dad having PCa so they can plan accordingly (anyone have an opinion as to when he should get his first PSA done?)  My brother just got his first PSA reading yesterday after I told him about my PCa and how he also needs to be aware.  Fortunately his came out at 0.79, YEAH!  He now has the all important PSA baseline with which to work.  Hopefully he and my son will be spared the beast, but they are now both aware that it has reared its ugly head in our family.  My Dad's last check up, at age 79, was PSA 0.5 so that's a good thing as well.  Mom and Dad don't know about my PCa, and never will - they don't need that hanging on them and besides with me it's so far, so good.

So then I have also made the decision to tell no one else, and the few that I have told are respecting my wishes of keeping it to themselves.  My reasoning - why put this burden on others to begin with, and if I am indeed able to beat the beast or at least keep it at bay, then why say anything.  Part of my own psyche is that I also don't want to be treated "differently" nor do I want some kind of darn "pity party" about it.

Just sharing my own thoughts and approach and wondering how others feel and have chosen to deal with this.

Yooper,
Before my surgery, I only told my family, my boss and a few select friends. After my surgery and radiation, I use it as a soapbox for letting people know that the PSA test saved my life. This is a very personal decision of who to tell and when. My decision to tell people now, is driven by my desire to get men to have the test and my acceptance of the fact that I have/had PCa.

When I was diagnosed I was working in the contract part of an informal contract-to-hire position. The client seemed happy with my work and I was hopeful they would hire me but they were not legally or ethically obliged to do so. Since hiring a new employee with cancer has a potential impact on group insurance costs (especially for a small company) I deemed it prudent to keep my PC pretty much a close-kept secret until they made their decision.

They did hire me and I am happy with my job but I still keep a low profile in any forum that might tie to my professional identity. (Peter, for instance, is not my real name.) The industry I work in is unsettled and I don't want my health status to be an issue if I find myself out looking again.

So for now, I have told my boss, a few coworkers, my extended family and a few selected friends. I am not aware of any online mentions that can tie back to me in a casual search. When I retire I will be able to come out of the closet a bit more.

Whoah didn't proof that last post..I really do know how to type lol.. :)

Here's another angle on whether or not to tell others about your PCa.

If you do tell, it might just be a good idea to include along with telling them some brief descriptive information about exactly what your diagnosis, prognosis, and future, etc., would seem to be. What your situation really is.

Case in point. I attended a family picnic recently where I got caught up with some relatives that I hadn't seen in years. (I'm sure you've all been to such events).

They all knew I had cancer. Word travels fast along the family grapevine. The subject came up in most of the conversations I had with these people. All were sympathetic. Some tried to be helpful. Some felt awkward.

But the thing that struck me the most about the conversations I had with these people was just how much ignorance and misinformation some of these people had about cancer in general.

Some of the comments I got were:

"You got cancer? When you gonna die?"

"You can't have cancer! You look too healthy!"

"All that chemotherapy making you throw up?"

"You're taking Lupron-what? Is it making your hair fall out?"

"You say this big machine shot you full of radiation? Are you radioactive?"

"You got prostate cancer, huh? Well, you know what they do about that one, doncha? They cut off your balls! HAHAHAHAHA!"

Ignorance, pure ignorance.

So if you do choose to inform people (relatives, friends, bosses, etc.) that you have and are being treated for PCa, it might be a good idea to have prepared beforehand and include a little fact sheet that you can relate to them from memory on just what your situation is that will help keep people from forming incorrect conclusions.

When I talked to those that I told, it included a large amount of details including my history, statistics and what they mean, my journey of choosing the treatment I chose versus other options and why, and my hope for outcome meaning beating the beast.

Totally good doing that with family and my closest friend - but to try and walk that path with co-workers, friends, etc., I would find that hard and again - other than the point about helping get the word out - why put anyone through it.

Still debating and the feedback / opinions / points of view are helpful. . . .

i started out cautiously but now my PC is common knowledge to everyone except my Mom but i may tell her eventually.

ed

 

Hi Jeff,

I havent shied away from telling anyone about PC...but I've found that one has to be careful to pick-and-choose when and where to tell someone about it.  I think that you get a sense for those who really want to know about it, and those who don't.

I find that it is a great opportunity to educate men, even though it is one-at-a-time, about NOT over-treating.  I often start by saying that PC is really two, or three, very different diseases...  That opens the door when they understand that even thought it is about 25K men in the US annually that die from PC, it is a small percentage of the men diagnosed, and an even smaller percent when you consider all the men that have undiagnosed PC (based on autopsy studies of men who died in accidents; this is another important part of what I tell men).

The message I project when talking about my own PC is that getting a baseline early helps to build awareness and understanding of PC, and through awareness and understanding (and baselining), we can reduce the overtreatment epidemic.  The overzealous epidemic of overtreatment of PC is one of the things that has made PC difficult to talk about openly.

(As you know) I've been recently "dating," and I told my "new friend" (a nurse) about my PC when I took her out on my boat...figured she's see the surgery scars on my belly when I took off my shirt for a swim, anyhow.

Yooper,

I told everyone: friends, family, coworkers, customers. I just use some common sense on how much detail to disclose. If someone asks for specifics, I don't mind sharing. But, I don't push it on anyone. I gauge their interest first.

Every now and then one of my friends will ask about PSA tests, biopsies, etc. My standard line with them is to always talk to me, first, before they make any decision to get a biopsy or treat. I tell them I want their head on straight, get informed, and to not panic if they get told they have, or may have, cancer.

While everyone has been very supportive the whole way, it is interesting that my chemo treatments (and loss of hair) resulted in the most resonance with everyone. It just seems that a lot of people associate cancer with chemo and hair loss. When I had radiation, many, if not most, folks assumed I would lose my hair with that.

Keying off something Mel said about repercussions.  At work, I felt I had almost the opposite reaction - a positive reaction. I worked through all of my treatments, taking breaks and time off only on an as needed basis (hospitalizations, etc).  I got a lot of positive feedback from others, including my boss and his boss. His boss, a business unit president, told me that no one could sense any performance drop-off through it all. He was impressed. My boss called me a "stud" for powering through all this.

Southern:

Your reaction was not the opposite of mine. It sounds like it was identical to mine.

Mel

Startech Hubby's not really the forum type...I sent him a link to HW but honestly I'm not even sure he's been here..I am hands on when it comes to this stuff...Hubby isn't--he's literally too busy..which is good/bad depending on the way you look at it...good in the sense he doesn't dwell on this an dis taking things in stride...bad in the sense he doesn't have a feel for this disease like I do...I will ask him this weekend..we closed up the boat and will be home weekends until April..plenty of down time now to discuss in depth..

I will tell him though he already has a fan hahaha ;)

I too am a tell all guy, Living in a very small town, word gets around pretty quickly. Don't break wind at night unless you want everybody at the cafe talking about it the next morning. Half the town knew already I was going to the doctor to get the PSA results anyway the day I found out.

And it is not that I mind, it is just the way our community is. Being very active in church, I gained a very strong support group as well. Those that do ask get the full story, the PSA results, what it means, what I am going to do and why. They also got the SE possibilities as well. I pulled no punches, but was careful not too get the language too uncomfortable. After the harrowing diagnosis day, I was eventually able to get a good grip and tried in every way to be light hearted about it as I could. It was obvious that many around me would duck their heads and try to shy away, lets face it, cancer is not a comfortable conversation, and many just do not know what to say. So I always made fun of myself and the side effects whenever possible. I'd go sit with the ladies in the choir sometimes and say I was just getting used to this side because after the operation I'd be singing different. Or I'd warn the guys around me they would need raincoats under their robes just in case I was having a bad day. It loosened everybody up and then we could all talk about it with no hangups or fears. I decided early on that the most important thing I could do was to get guys out of the mindset that this is something we don't talk about. I think there are too many guys out there ignoring problems that are serious. I hoped my "having fun" with it would make an impact. And it did, a lot of guys told me they hoped they could handle it as well as I did. I don't know that I handled it, I just was being me.

But what is most important are the guys that have since gone to doctors and addressed their prostate issues. I know of two that have. I know of at least a half dozen others that have since had their PSA's done and all are fine. My brothers have all had it done. I have had folks come and talk to me about their dads. At a mens church group, while still wearing the catheter, I stood and talked a few minutes about it. Offered to help anybody, anytime with concerns. Makes me feel like I am getting more from the cancer than it is getting from me. Feels good.

My wife did not go with me the day of the DX. I had already had a negative biopsy, and I went that day 100% expecting another negative. (I was so confident I vowed to go skydiving nekid if I had it, I welshed on the bet). Then the bomb fell. So in the middle of all the things I was trying to deal with, I had to figure out what I was going to tell her.

By the time I got home I had started to get my grip and was doing ok. (The hour drive home is another story). It just so happens that the Friday I got the DX, was the town's Relay for Life event. Our choir was going to sing, and my wife having kicked Thyroid cancer's butt a few years ago, was going to do the survivors walk . When she got home, she changed her mind and wanted to go later when we sang. I told her, no, we have to go now so I can get my free shirt and I get to walk the survivors walk. At first she looked at me like I was an idiot, (which is a mistake a lot of people make), and she realized what it meant.

She is a tough old gal, never batted an eye, and quickly informed me that I was not a survivor yet. I laughed and she laughed and we argued the technicality all the way to the Relay for Life. I got the survivor shirt and did my stuff and lots of people saw it and cried but I made sure a lot more laughed and we had a big time.

There is a childrens song that goes "This little light of mine, I'm gonna let it shine." Lot of theology in that statement. But I am applying it to my cancer and how I relate to others too. I have an experience that needs sharing because their are people out there that need to hear it.

Sorry to get long winded, it's my day off and nothing on TV.