How do you deal with your friends' ignorance about your condition?

Posted by tomf @tomf, Mar 28 7:32am

I have been open and frank with my golf and pickleball buddies about my incontinence after my RALP of several months ago. They have come to understand the bathroom breaks that take longer because I'm changing pads due to stress incontinence. I make jokes about the ED. ("Damn my hearing problems. I thought my doc said I'd be a unique guy for quite a while, but he actually said a eunuch") The other evening I was flabbergasted as our foursome went out to dinner with our wives. My wife was enjoying the evening and opted for a second glass of wine, a rarity for her. Another wife (a very close friend who knows about my surgery) leaned over, smiling and whispered "I bet you're gonna get lucky tonight". Now I wasn't offended by the nature of the statement, we all joke like that. But I was saddened by the lack of knowledge of what a prostatectomy does to a man's abilities. All of us in this group are in our 70's and we each have been open about our health issues. I guess I was dumbfounded that this friend hadn't done any research on what my surgery would do. Instead of embarrassing her, I just told her to read up about prostatectomies. Back when I was first diagnosed, I told another acquaintance of my situation and the response was "Well, thankfully it's only prostate cancer." I don't hold a grudge in either case, but I wonder if anyone out there has similar stories? Has society downplayed this diagnosis so much that people have no interest in it, especially with regards to their friends?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

tomf: most people do not understand the issues and have their own pre-conceptions regarding prostate cancer. I do not expect to have my friends, some of whom I have known for 50 years, research my medical issues. I will discuss it briefly, if there is an interest. Those with prostate cancer, like many on this web site, spend a good deal of time researching what can be a complex subject filled with misconceptions, misdiagnoses, misinformation and much more. How could a friend understand the subtleties regarding ED, urine flow, bleeding, spread, ...without having had it themselves or a close member of their family having it.

If any of your friends have an interest, they will ask. Don't worry about it. It's a natural ignorance not an intentional one, is my best guess. As such, sexual activity jokes, without a full understanding of an individual's situation, seem to live on forever. Maybe someday when sex disappears and we are all a byproduct of AI lab creations, that could change.

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@mtb63

I think, like many things in life, if you have not personally experienced something, it remains somewhat abstract. I was guilty of thinking my father, father-in-law, and brother's prostate cancers "weren't serious". Then, years later, I was diagnosed - by a rather insensitive physician - who literally made me feel I would die soon - I went home and "googled" "what to do if you only have one year". Fortunately, all scans and tests revealed no spread anywhere and had surgery. But the after-effects of surgery have been a "challenge". So many things one takes for granted for one's entire life can be gone. No one truly understands this until they have personally experienced it. It can, in some ways, be a "lonely journey". Fortunately, there are many great supports out there (like this forum) to help.

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mtb63 you shared everything I have not. For so long we have taken all aspects of life for granted and believe it could never happen to me. How wrong we were. Thanks for opening my eyes. God bless you and everyone else traveling this journey.

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@bens1

tomf: most people do not understand the issues and have their own pre-conceptions regarding prostate cancer. I do not expect to have my friends, some of whom I have known for 50 years, research my medical issues. I will discuss it briefly, if there is an interest. Those with prostate cancer, like many on this web site, spend a good deal of time researching what can be a complex subject filled with misconceptions, misdiagnoses, misinformation and much more. How could a friend understand the subtleties regarding ED, urine flow, bleeding, spread, ...without having had it themselves or a close member of their family having it.

If any of your friends have an interest, they will ask. Don't worry about it. It's a natural ignorance not an intentional one, is my best guess. As such, sexual activity jokes, without a full understanding of an individual's situation, seem to live on forever. Maybe someday when sex disappears and we are all a byproduct of AI lab creations, that could change.

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Uncomfortable and unknowing reactions, but not intentionally unsupportive.

"Prostate Cancer: What you die with, not from"
is what many have heard.

"You have been treated and will be fine" therefore is their impression.

And that is not wrong for some patients, but it can be the tip of the iceberg for many, including me with G 9, EPE and BCR.

I feel that they all mean well and most just are not aware of the physical and emotional complications and components.

"Well you look good" is sometimes an uncomfortable reply.

A PCa friend says; so does a counterfeit bill.🤭
I appreciate their concern and try to graciously accept their well wishes.

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The comment I get the most is " You look good". my coworkers know I have cancer, was out of work 2 months at the beginning. What they don't know is I'm stage 4. Some think I've had treatment, must be okay now. There is no point bringing someone's day down trying to explain my situation. I take their well wishes to heart and it brightens my day. This site has been a blessing to me, I can actually talk about my cancer and all that goes with it.
I have no place to put this so will say here.. when I'm at home, I get bouts of breaking out in laughter. I have no idea why, my wife just shakes her head and smiles. I blame it on the meds like everything else. LOL,, Best to all

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@tomf My brother is a prostate cancer survivor. His diagnosis and treatments were in 2020 and 2021. We've talked many times about being cancer survivors (mine was endometrial cancer) and what to say to friends. We don't expect anyone who hasn't been through cancer to understand what the experience is like during treatment and after treatment. One of my friends said to me after I completed radiation treatment - are you all better now? I didn't even know how to answer that even though I knew my friend was trying to be kind. Both my brother and I just kind of shut down when this happens and then we talk with one another. What I'm basically saying is that even though many of our friends know about respective cancers and often in detail they still say things that show they don't "get it". But why should they? These are our experiences and so if they are truly interested I will explain. If not, I've learned to not take such comments personally and let them go.

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Living with cancer and others well intended but irritating comments, is a lesson as to what comments we should make to our friends and family when they have cancer. Now I just say that.

“I am hoping for the best for you and your family and I hope that you will keep me in the loop and if I can help in any way please let me know”.

People will share with me what they wish to share

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Hello Tom,
I'm the wife of a man who was diagnosed last May and had a RP in September, and I can say without hesitation that I was as floored as you are at how little the general public knows about this disease. I concur that the entire topic of PC, its effects, AND the effects of its treatments are downplayed to the umpteenth degree. This is even more true about advanced PC. Like you, it has left my husband and I feeling frustrated and hurt, particularly among friends and family who had bought the idea that it's so common, it must not be a "big deal." (No one said this, of course; that was just our general take.) When we shared some of the deeply personal ways our lives had changed after surgery and later, the effects of the hormone treatments, it was like it was breaking news. Quite frankly, the only thing worse than the feeling that our friends were clueless was the conclusion that the whole medical establishment had pulled the wool over our eyes.

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