who to tell

When my biopsy came back positive I told my brother and my son and a few close male friends. I did not tell my girlfriend (D), did not tell my mother. D had suffered a lot of loss - a job she loved, a dog she loved, and her daughter had moved out to make her way in the world.

D was emotionally fragile, my operation was weeks away. Why add my situation to her suffering? She has always found comfort in the fact that we both come from hearty families with long lives.

My mother, an emotional and expressive woman, would worry constantly. She would weep, lose sleep, and at 83 she has health issues of her own.

Of course I had to tell as the operation became imminent. There was a short time of worry and then a celebration when I survived the operation and bounced back well.

But now, right out of the chute (3 months), I have a borderline PSA (0.097).

Depending on your tolerance for risk this either is or is not something to worry about.

I am inclined to not tell anyone except for a couple of very close friends whom I trust to not freak out. There is no reason to upset people with what is at this stage purely speculative.

Who would you tell?

As Buddy alluded, some people have to be very discreet on whom they tell as it would have immediate adverse employment consequences, a career ending event.

You did the right thing telling your male heirs.

If the relationship is going to last you have to tel your girlfriend.

My parents are both deceased, and I do not keep my stage IV cancer a secret from anyone but my mother in law who just turned 88.

Some of the obvious benefits of telling more people is more people praying for you, plus you never know who knows somebody who knew somebody that leads you to a better treatment plan, better doctor etc.

It is especially important to openly discuss it with your spouse or in your case girl friend, as the Lupron totally destroys libido and she has to know you love her as much as ever but the medicine has that effect.

The important thing is to not be someone who only speaks PCa, live life to the fullest and answer any questions about how you are doing but don't dwell on it.

The positive thing is I no longer take life as much for granted as I used to.

LupronJim

I work for a supportive company so I'm not worried about the fact that I explained to my managers the reason for my absence. The HR rep phoned me to tell me that I had their full support. "You're in the Cancer Family!" she said brightly.

My girlfriend lost her libido with her menopause. A great loss to both of us because she was an energetic driver of our encounters. Wow! But our love is strong and deep. Once I told her she stepped up and was my nurse through my convalescence -- changing my catheter bags when I gave her the chance (I managed fine by myself), dragging me out for walks. She's a good woman.

And yeah. Don't dwell.

I enjoy my work, I have great friends, I have energy, pleasure... If only I could get a fabulous throbbing hardon!

Why is this any different than a knee replacement???? Your friends and family will help you in any way they can. Why not share........just don't dwell. This is not the end of the world after all. It is a condition that hits one of every six men.

My mother in law has been my best supporter, she is 85. Full disclosure, I was diagnosed one week before my father passed .... at age 93.... and I had not told him. Mixed emotions on that, but I'm pretty sure he knows. I did not tell my mother as she was lost without my father and it wasn't about me, She needed my support, not the other way.

I don't broadcast the disease, but I don't hide it from my family and friends. It is integral to our life.

I told friends and family right away because they would have been hurt if I didn't. I got my diagnosis 8 months after taking early retirement, so I didn't need to worry about my job or co-workers. It is what it is and while I didn't broadcast the news, I did nothing to hide it either.

Tom

I'm an open book. At 5½ years post surgery - no one asks me anything about it except for a friend that I don't see that often. She went through annal cancer about the same time...so we share a bond.

Tall Allen said...
I told everyone I could if an opportunity arose. I know what it's like to live in a closet, and I will not do that. It's nothing to be ashamed of, and hiding things reflects shame. Hidden things grow in size and consume us. When a subject becomes an ordinary part of an everyday conversation, it gets defused. That's the reason I have to talk about it.

The reason I share with others is because they deserve to know. People I love care about me and have earned a right to be let in on important aspects of my life. It also shows respect for them. It is for them to decide how to deal with the information, not me. If one is hurt or scared by it, well, it's reasonable to feel hurt and scared when someone you love is in danger. It's their right to feel however they feel about it, and it is not my right to rob them of that by deciding for them that they can't deal with it.

I remember my mother hiding her cancer from me until she couldn't. I felt hurt that she didn't tell me sooner. "I didn't want to worry you," she said. "I'm your son, that's my job." She finally understood my need to be informed, and it really opened up our relationship in her final years. There were lots of tears and lots of hugs, as there ought to be.

And the net result is that the more we let others in, the less we are alone in this. How great a blessing is that!

- Allen

TA, I think this is exactly right and I agree completely with what you said

I am an open book person, i tell everyone, if someone can't handle it, so be it. i have my supporters in real life, and i have those that took off running. good way to find out who your real friends are.

While there is no right or wrong in what you chose to do, its a personal choice, the only part of your story i didn't agree with, was not telling your girlfriend about your dx. but that's just me, my wife and have shared every aspect of our life together for 40 years, we have no secrets between us.

Don't always write off the elderly. My mother was 81 when i was dx. at age 56, she has her own health issues, has been a widow over 20 years, etc. But she would want to know what was going on with her children, and she has been a real supporter and trooper through all i have endured the past 5 plus years.

Guess the best answer, is to tell whom ever you trust. I tell complete strangers if i see an opening, so that i can pass on some PC awareness to those in the dark. I don't push it, but if i see an opportunity, i take advantage of it.

david

Do what you will and love…. paraphrase St. Augustine, you know the mayor in florida, with all the Hippo's

Being blindsided by the big C, I felt it very therapeutic to discuss this with my friends. I play Senior Softball all year long and feel blessed to experience the commaraderie and friendship this brings. I was not prepared to find that many of them had gone through the same thing. Just like being on this forum, being able to share thoughts, feelings, worries and most of all, success stories, helped me understand and handle this soooooo much better.

Tall Allen said...
The reason I share with others is because they deserve to know. People I love care about me and have earned a right to be let in on important aspects of my life. It also shows respect for them. It is for them to decide how to deal with the information, not me. If one is hurt or scared by it, well, it's reasonable to feel hurt and scared when someone you love is in danger. It's their right to feel however they feel about it, and it is not my right to rob them of that by deciding for them that they can't deal with it.

I remember my mother hiding her cancer from me until she couldn't. I felt hurt that she didn't tell me sooner. "I didn't want to worry you," she said. "I'm your son, that's my job." She finally understood my need to be informed, and it really opened up our relationship in her final years. There were lots of tears and lots of hugs, as there ought to be.

And the net result is that the more we let others in, the less we are alone in this. How great a blessing is that!

- Allen

I think Allen nailed it. He's got my vote for post of the week.

If you really want to be intimate with your girlfriend -- physically and emotionally -- you have trust her to deal with this. To do otherwise is to not treat her as the intimate confidante we all want our spouses to be. It's really a matter of respect and trust.

I don't like to think about it much. I think about it enough to make my decision about the next step and then I put my mind to other things.

If I'm going around telling everyone about it, having hand-holding and hugging moments, then I don't have the freedom of putting my mind to other things. The people who love me will remind me every minute with their worry. Being there for me. They will feel that obligation to worry about me and here I am thinking about something else.

I am a hearty 63 year old but never managed to really grow up. I get excited about things and I aim to have fun, I laugh a lot.

Yet deep within me lurks this disease. Cancer!

But I feel great.

The Cancer may be the thing that takes me down but it hasn't it done yet. If I 'disclose' to those who will worry more than I am worrying, then Cancer becomes a greater burden than it needs to be.

I admire Tall Allen's answer but have to admit it's not me. When I was diagnosed I was half way through a six month contract-to-hire assignment with a company I hoped would hire me. Since I was (mis)diagnosed with a very low risk cancer I didn't expect a major impact on my ability to contribute and it seemed best to keep my cards close to my chest in term of my public and professional persona.

I was hired as an employee and the company seems happy with me and I with them, but there never seemed to be a need for a big announcement. When I was scheduling my time off for surgery there were, of course, people who needed to know and I am sure the rumor mill has widened that to those who were curious. From time to time a coworker will mention that a friend or family member has been diagnosed and I will open up so I can offer my support, such as it is.

I told my wife, of course, and that sufficed to inform close friends and immediate family. I answer their questions but I hardly ever vent in person. You guys know more about my mental state than my doctors, my best friends or my wife. I do have some friends and family who are sciences types and I will occasionally nerd out with them about treatments or new insights into the disease. When a friend visited during my ART I invited him to come along for a session and I arranged for him to see the particle accelerator.

Any time I think it would help someone to talk about my experiences I am glad to do so but I tend to keep it on a "need to know" basis. In practice that may not be much different from Tall's "deserve to know" standard but it suits me better.