How to discuss post treatment status with Friends and Family

After my surgery, I simply said the surgeon and I met, discussed the results, we will actively monitor with labs and consults every few months for any sign of its return, but for now, we're ok.

With my family, totally honest and complete reveal.

I'm a year into this, with undetectable PSA so far after surgery, so not a lot of nuance to share with others. With my family I share all issues about ED. Adult kids do NOT want to hear about their parents' sex life! With friends, it varies. I'm glad to have a few male friends my age I can explain ED side effects to. They are appreciative of knowing that, but important to avoid TMI.

As to my prognosis, I say, "My PSA is undetectable, but with this cancer you never know." I don't think I'm "cured", so why should I say that to others? Usually they just want a brief "I'm OK", then we move on.

thanks for the comments!

Someone told me not to say cancer free but “presently cancer free”. Not sure it makes any difference but that is a good feeling either way .

Dear MN281,
I always say to everyone,"Never Bed-da, BABY! Never BED-Dah." That is as much for my psyche as it is for anything or anyone else- totally a positive outlook until I'm in a hospice bed with liquid morphine being placed upon the inside of my right cheek and gum to diminish the pain I cannot withstand! I may have unrealistic expectations but I have a complete grasp of death's future grip on me, temporarily, as I am a catholic and hope in a loving and happy eternity given to each and every soul. But back to convincing my "ID" and boosting my energy in everyday life.

Acquaintances: Nobody really wants to hear your bad news, "Laugh, and the world laughs with you; Cry, and you cry alone!"

Family: The first year I was telling everybody what was happening in real-time. I've become more discreect as I now realize my informtion was an additional stressor in my brothers', sister's and childrens' lives for an extended period of time that wasn't necessary. I still tell everyone but after a scan is done and the results are confirmed, so far I haven't had to undergo any more treatments other than the quarterly Lupron shots. So it is better for everyone. They get the information, but without the additional 3 weeks of needlessly worrying about what could happen to me.

Friends: I have a large Family, my family are my friends. I know most people don't have this Blessing and that loneliness and isolation are very real and agonizing for many in our Country and the World. I did open up to one person as we sat waiting for an appointment one day, she confided to me, I confided to her. I was fortunate to be able to get into the YMCA's LIFESTRONG Program it was very benefical to me and I would encourage any man to try to get into the 12 week program and open up at the end of the first workout session with all the other cancer survivors; it is cathartic and if you don't already, you will appreciate the strength and fortitude of women who are also surviving cancer.

Healthcare Professionals: They get the opening, "Never Bed-Da..." just like everyone else so they know I'm still fighting, still loving life, still full in on this, not giving up. Then I start telling them the truth about how I really feel and what aches and pains and changes have occurred since our last appointment. For you men on Lupron I strongly reccommend that you bring a second person in to write down everything the Doctor and /or the Nurse(s) tell you. I bring my wife and she takes notes as My mind scrambles up things or completely forgets an important point or two they have said or that I have completely forgotten to bring up!!! It has been important for me so I don't screw things up!

Postscript about loneliness: I am a most fortunate person, very seldomly in this life have I been lonely. I've had a strong Faith that God was always with me, and nothing is going to happen to me that God doesn't already Know and that everything comes out in the wash and will be allright. I have empathy for those who are not in my situation and feel the burden of loneilness of rejection and fear of rejection. May I humbly suggest, you ask a passerby or a person sitting next to you at your next appointment if you could tell them something, or ask them something and tell them how you feel or ask them how they feel and see if that might start up a conversation that would bring you both some comfort. If, not I give the monitor of this forum permission to get my information or for that person to contact me with your information so I might give you a telephone call and find out about how you're holding up and we can both get strength from one another. God Bless you All and try to remember God is with you untill the end of the Age.

Very good points by 'weakbutstrong'

Within the small circle of people that want to know, or need to know, what I do is write things down, and that begins with my questions going into my every 3-month visit with my health team, and also the results of it. I make sure my write up is clear, complete and positive. I go into the details of the treatment as this is my journal, and I also spell out my position on my own mental health. This isn't to say this is the approach that everyone should take, but this works for me to have as a chronicle of the experience.

keep the faith and tell the story that counts

I really like the ide of journal, thanks. I think it will help me further down the road.

I’m a year past RALP and PSA has been undetectable since then. ED is still an issue, but incontinence is not.

I simply tell those who ask that I’m cancer-free for now. I suspect family and friends don’t really want any more information than that at this point.

First, I have a "health" email list. If you want to hear about my health, you can sign up. If someone else wants to hear about my health, please let them ask me, do not forward my emails.
Second, I've always told others we need to have multiple stories of different lengths. The answers already on this thread reflect that, from "never better" and "cancer-free for now" to details for family. I call it the 15 second, the 30 second, and the 3 minute levels. Having multiple stories more or less ready means I may be able to pick the right level of sharing for the situation, the person, and myself without flooding (saying more than appropriate,) freezing (shutting down,) or fleeing (doing something to get out of the situation abruptly.)
Third, when I have news, I always tell my wife and kids, and usually my sisters, before I tell anyone else. This is very short, but just a heads up so they're special roles in my life are acknowledged. They're not just part of the crowd. I may do the same thing with close friends if we're together, but it's not a requirement.
Ultimately I know that the disease doesn't just affect me, but it's mainly my problem. Others may try to come alongside appropriately or inappropriately, but I take these efforts as genuine care and leave it at that.