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To tell or not to tell - that is the question..

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Posted 5/29/2013 11:08 PM (GMT 0)
At first we decided not to tell people but for a very few relected family and friends.... to many chef in the kitchen and we were to much in shock, sacred and upset to deal with other peoples reaction.

Now we have a treatmnet plan and my husband and I feel a bit stronger now and are considering telling work friends or friend as it comes up....etc.

Our questions is:

Would you recommend been open or keeping it quite? Pros and Cons...


Also as we are a young couple.... there is the ED that we know people will think of etc...

and people always tell you a story of someone they know but never have the full details

Then there is the support and for my hubby to be able to talk about it etc

If you had the choice again, what would you do?

thanks

Age 52 - father of 4, husband, construction worker

Nov 2008 -  PSA 3.75 - no symptoms & Biopsy clear

July 2008 -  PSA 4.00 - no symptoms

Sept 2012 - PSA 6.40 - no symptoms except maybe tired more

April 2013 - PSA 6.94 - no symptoms
                    Biopsy #2 - Cancer found in cores

                     T2C, Gleason 4+3=7

                     CT and Bone clear

May 2013   Cancer Dr & new pathology 2TA Gleason 5+3=8, 
                    - no symptoms

 

Treatment suggested:

HT 1yr, 23 days of EBRT, then LDB seeds

Projected by 2015 
66% recovery of ED, Ur with no bowel issues

Posted 5/29/2013 11:12 PM (GMT 0)
hotly debated topic here.

I'm for being open and honest and wouldn't change a thing I did. That said, there is always a need to know crowd and ones that don't need to know.
Posted 5/29/2013 11:13 PM (GMT 0)
I immediately told my close family and 2 of my closest male friends. They gave me so much support and really cheered me up. the ED thing is no laughing matter and if they really are your friends they will know that . . . Q
Posted 5/29/2013 11:14 PM (GMT 0)
Only my wife knows. Our kids (ages 6-15), friends, mother, in-laws, etc, only know that I had abdominal surgery and that the outcome was positive.

I generally prefer to keep highly personal matters private.

-Gedman
Posted 5/29/2013 11:30 PM (GMT 0)
That's a bell that can't be unrung, so walk carefully. I told a few close friends and family who have given me wonderful support. I did let the news sneak into some of my business relationships and a little further than I would have liked in retrospect.

People don't always get it and there's some who will treat you differently. Especially in my case as an entrepreneur. I come down on the side of selecting those few close friends / relatives that you can trust. And i told all of my family--my daughters are 14 and 17 and they deserved to know.

You can always go slow, but there's no undo button

Ray
Posted 5/29/2013 11:47 PM (GMT 0)
Gedman, You are my hero!

I too kept it a secret. It's been 4 years and my mom still does not know.
I have my own business and bid on contracts. I did not want anyone to even think for a second that I could not perform.

I figure you can always tell people another day. You can't ever untell them!
Keep the genie in the bottle as long as you can.

I did tell you HW folks and that helped me more than you know.

Jeff
Posted 5/30/2013 12:15 AM (GMT 0)

Worried Guy said...
Gedman, You are my hero!


Wow. I hope that everyone bookmarks that comment for future reference :-)

I intend to tell my sons when they each turn 30 (15 and 20 years from now), so they are aware of their family history of PCa and begin regular screenings.

-Gedman
Posted 5/30/2013 12:17 AM (GMT 0)
I had just taken early retirement and 8 months later routine physical started my journey, so I didn't have the whole job thing to worry about, so I told most people. No regrets.

Tom
Posted 5/30/2013 1:12 AM (GMT 0)
I've never been good at holding things in; it stresses me out. I only slowly told a couple of very close friends at first, partly to get some moral support because it was (still is) freaking me out. It finally occurred to me that a lot of my reticence was because admitting it somehow made it real.

I told my direct-report guys at work, (but still haven't told my off-site boss) because they were aware I was gone a lot recently (all the doctor appointments), and were creating more harmful rumors than the reality. They've been supportive, and I appreciate the occasional encouraging comments and sympathetic ears. My management doesn't need to know unless it impacts my work deliverables, and I don't intend to let that happen.
Posted 5/30/2013 2:13 AM (GMT 0)
I am always for the open and honest approach. For those that can't handle my situation, it's their loss in my opinion. Good way to find out who your real friends are in life.

david in sc
Posted 5/30/2013 2:18 AM (GMT 0)
I only told "those that need to know" - my brother so he would get a baseline PSA, and my son so that when he hits 40 he will get a baseline PSA. A few absolutely close friends and folks that work for me - men, so that they can be aware of PCa since our world in general sucks about getting the blue out......
Posted 5/30/2013 2:43 AM (GMT 0)
I'm a regular Chatty Kathy about it. I tell anyone who will listen at the drop of a hat. No "C-word" from me -- I shout out "cancer!" I find that defuses it. When I hold secrets, as if prostate cancer were a shameful thing best left in the closet, they take on a life of their own and become more important than they really are. When I don't make a big deal out of it, I find that no one else does. **** happens, and everyone knows it, and everyone has **** of their own.
Posted 5/30/2013 2:48 AM (GMT 0)
You know how the groomsmen will decorate the car at the wedding? That was how I did it.
Posted 5/30/2013 3:54 AM (GMT 0)
I tell everyone that will listen. I blog about. I've got two brothers with it. I got no secrets. If an employer or a friend will hold it against me, well I won't work for anyone that petty and I don't have friends like that.

Except for the wacky lady that told me rubbing vinegar on my knee would cure my gout, I've only found people that are supportive and compassionate.

and one benefit at work - when we moved, I got the cube closest to the isle cause they thought I'd like to be closer to the restroom. Turns out it's also closer to the coffee pot, the lunch room and the door to the parking lot.

and furthest away from the boss's office. How could life be better?

Andrew
Posted 5/30/2013 11:12 AM (GMT 0)
I live two lives... I go away to work (gone a month at a time, then home a month). At home hardly anyone knows. I haven't told my kids 8 & 12 yet. And only close family knows. But at work I had to 'explain' why I was missing work. Once it got out there it went around from person to person. So it is general knowledge now. I wish it wasn't.
A new person started working with me this past month, and after a few days of the general water cooler conversation I had to assume she was confused and wondering. I was basically forced to explain everything to her. At least she asked questions and listened, I know there are a lot that just assume things and won't ask. The 'talk behind your back' gets to me every now and then. It's nice to have someone around who knows when you're having a bad day, especially for me because I'm not around my family. But sometimes I wish I didn't tell anyone.
So my advice... Go slowly... It can't be put back in the bottle.
Posted 5/30/2013 11:36 AM (GMT 0)
I've been pretty guarded with the info, since I have not started any type of treatment yet.  My finacee knows, of course as we live together.  i have not told her 15 year old son yet.  His biological father has PCa as well, and the boy was pretty freaked out about that (his Dad did a lousy job of explaining things to him, and he's on AS for pete's sake!), so, until I have a concrete plan to convey to him, I'm holding back.

I did tell my best friend, and he's been a big support for me.  His humor is a God send.

I told my brother, since our family is terrible about sharing medical historys.  He turned 50 this year, and I urged him to be tested.

I've told my boss, since I've had to leave work early so much for all the testing and consults.  He's been great so far.  Not sure how many others at work know, and I've been a little evasive so far.  Once again, I'll open up when I have a solid plan (I have one other health issue I'm dealing with at the same time, I'm having a biopsy on some chest lymph nodes as a precaution this Monday, everyone feels it's unrelated to my PCa, but we're checking to make sure, a positive on that changes everything, hence my reluctance to start telling everyone until i have the full story).

My finacee did tell her best friend, who burst out crying the first time she saw me.  This is exactly what I DID NOT want, but it is what it is and my fiancee needs support from her friends as well.

I'm going to beat this thing, but I don't feel the need to talk about it with everyone I come in contact with.  I do that via this site and you guys (and girls) have been great!

Mike

Posted 5/30/2013 11:57 AM (GMT 0)
When my husband was diagnosed, we did not hesitate telling family, friends and my husband's boss. Because of the type of work he does (corporate/office), his PCa was not an issue. But, I found it interesting how the different sexes (male vs. female) responded to the news:

For the most part, the men in our lives did the "oh, I'm sorry to hear that" then clammed up...with the exception of my husband's boss, most of them never ask how my husband or I were doing, nor were they 'interested' in my husband's recuperation after surgery (incontinence, ED, etc.). I'm also surprised at how many of the men in our lives are not familiar with PSA tests and DREs, and certainly don't want to hear any of the 'gory' details about diagnosis and treatment (can't say I blame them).

The women, however, were mostly open and supportive. They are the ones who checked in on us, the ones who came and spent the day with John right after he came home from the hospital and I had to go back to work. My closest girlfriend has an uncle and a close neighbor who were diagnosed, so she was very interested in learning about John's journey and how it impacted me.

Don't assume that family and friends will automatically wonder about ED and incontinence as I've found that most people do not understand what is involved with treating PCa unless they've been through it.
Posted 5/30/2013 12:24 PM (GMT 0)
Yep. It's amazing how many people don't know anything at all about prostate cancer.
Except for a few guys that had already been treated for PCa, I had to tell them what it was when they asked. Fortunately, they asked. They now know its just not an "late in life" disease.
There is still very little educating being done as a whole.
Posted 5/30/2013 2:49 PM (GMT 0)
I told family, close friends, and also co-workers who had a "need to know" at the time of my original open surgery. I had to tell co-workers because I needed to go out on disability for nearly 2 months while I recovered. But when I had salvage radiation a few years ago I purposely kept knowledge to only my wife and my adult daughter and her husband. This was because my mother by then was in her mid 80s and my father was in hospice care at home.

I figured my mother had -- and still has -- every reason to believe I was cured by my original treatment and has no need to know otherwise. So to avoid any accidental slips of the tongue didn't tell my sisters or friends who would be likely to talk with my mother.

As it happens my mother, now 89, has been in the hospital all this week with complications from a heart condition. My wife and I are leaving in about an hour to spring her from the hospital return her home. I've been working out how to put small washer/dryer on the first floor so she can continue to live independently, but without using the cellar stairs any more. I'm really glad she does not have to worry about me.
Posted 5/30/2013 2:50 PM (GMT 0)
This is a question I never really had to think about.
I told my close family, a few friends and the guys I work with.
I am the oldest at work and the day before I took off my boss let me meet with the guys and him.
I explained how I found out about my prostate cancer and my tests. The outcomes of those and my surgery.
They had a few questions and after I got back a month later one of the younger guys who is 41 said he had his PSA tested and it was good. I was especially trying to educate them about it. I also had a special talk with a good friend I work with who is 58 and an African American, letting him know about the stats. I feel as I was very uneducated about PC before so I should share what I know now.
Posted 5/30/2013 2:55 PM (GMT 0)
canuck77 -

We had a good discussion on this same topic a few months ago (a good number of comments made there also):

www.healingwell.com/community/default.aspx?f=35&m=2542100
Posted 5/30/2013 3:45 PM (GMT 0)
I was and continue to be open book and Chatty Cathy.  My openness has helped as many other men have come to me because they knew I had it and was happy to discuss it.

However, I don't criticize anyone who keeps it more secret.  If I was working and concerned about my job I might feel differently.  Also, if I had significant SE's I might also feel a little more secretive.

Jim

Posted 5/30/2013 4:12 PM (GMT 0)
Everyone's comments have been a great help. Thank you so much. We are going to go by each case that comes up and tell when it feels right and skip the ones that are drama junkies :O)

Thanks so much again
Posted 5/30/2013 5:10 PM (GMT 0)
I told my father as soon as I was diagnosed since he'd been there done that 25 years earlier. He told me to tell my brothers, one of whom has since been treated for PCa. While news was kept fairly close to the vest, short of lying there was no realistic way of keeping the initial surgery quiet. For example, the doctor who checked my prostate tissue in at the lab was a friend of mine. "I didn't know you were sick."

It was much easier to keep the SRT quiet since it just meant I missed an hour of work every day. I believe most of those who know are those I compare notes with.

The thing is, most people have their own lives to live. If you are up and about, looking and acting normal, they will treat you just that way.
Posted 5/30/2013 9:33 PM (GMT 0)
I kept my diagnosis close to the vest for a while, but eventually started telling people; not everyone, but family, close friends and certain work colleagues. Nobody else really needs to know, but if others do find out through the grapevine, I'm okay with that. I am completely unconcerned about what others think of me because I have this medical condition.

I had a friend who went through this 1 year ahead of me. He was 38 when diagnosed and opted for open RP. Watching him go through this and come out on top really helped me cope with the whole situation. As a result, I openly share my circumstances so that if anyone I know ever suffers the same situation, they can find comfort in knowing that someone they know went through this and survived.
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