Helpful & Not So Helpful Things to Say to Men with PC

Great topic:

Worst responses are often from people who think they know what it invovles.
eg.
"Oh - INSERT NAME - had that and it never casued him any toruble"
"Oh my god, doesn't that mean you're going to have to be castrated!"
"That's only an old man's disease isn't it?" (ie Why have you got it?)
"Well at least they've caught it in time."
Plus of course:
"But you look so well/healthy/fit/"

Bad responses have also come from people who work with other cancers, who think it means you only have a matter of weeks/months to live.

On the other hand thinking about death resulted in about the only rational response I had, which was from a young nephew who thought for a second, then looked at me and asked me if this meant I was going to die. When I said: "Well, not soon." he sort of nodded and said "Okay."

I have also had a good response from my in-laws, but then again my father-in-law has PCa. Trouble there is of course that it means they know all about what it involves re incontinince and impotence issues.

Good responses have also come from female friends especially ones who have had breast cancer as they are aware of how a diagnosis can be survivable, but also how it can been a life changer too.

I had a good response from my (female) GP too which was important, basically she said something along the lines of "Poor you, you're so young. I've never had a patient with PCa who's been so young."
Even my dematologist has been very understanding and now she usually spends more time talking to me about my PCa and the side-effects than she does looking at my skin.

However, the problem remains that we are all so different both in terms of what is going on inside our bodies, how we respond to treatments, how we feel about what has been and is happening and how we feel about the way other people react. What annoys me may not be the same as what annoys others.

Still at least all that is annoying me at present is the disruption caused by the rebuilding of the hospital's car park, rebuilding part of the hospital and rebuilding loads of the roads leading to the hospital and the fact that they have changed the railway timetable so that there is no longer a direct train from near my home to near the hospital, and that if I change trains I can end up on trains without WCs.

Oh, I just remembered another one!

One of my employees said, "Prostate cancer? You'll grow boobs!".

So, that was special.

This is a great thread. Glad you started it.

DH did not share his diagnosis with many people, especially after getting some very odd responses. Hard to know what to say when someone says you're lucky to have the good cancer. Yes, so lucky.

One friend, trying to comfort my husband, said that his wife's sister "had prostate cancer, and she's doing well now." We didn't know what to say in response and just let it go.

One of my friends, upon hearing about the surgery, and that DH's catheter would be removed on our anniversary, jokingly said, "No sex for you!" To which I said, "Probably more true than you will ever know." She just laughed; not sure she ever got it.

People mean well; they just don't know that much about PCa. And neither did I--55 days ago.

I have also encountered a situation which initially resulted in some—well, let’s just call it “discomfort”—on my part.   I initially felt that the discomfort was caused by the questions asked by friends or acquaintances about my PC case.   When I later came to peace with my situation, I realized that the discomfort came from my own response .   I was not being truthful…with them, or with myself.   The question was quite simple; something along the lines of:   “How’s that cancer thing you had?”   In the first couple years after my treatment (RP), I frequently shrouded and evaded a direct and honest response.   It was much easier to divert my head away, mumble, “Oh, I’m fine,” and quickly change the subject.   I did not want to face the inevitable follow-up questions some of you have expressed here—questions about total incontinence or complete “loss of manhood,” (a phrase I did hear from one acquaintance) which were often based on their personal, but indirect, experiences with the father’s, or grandfather’s, cases of PC.   Being in my 40’s at the time of diagnosis, few of my friends had direct experience.   So, I said, “I’m fine,” and changed the subject.     “Our lives improve only when we take chances and the first and most difficult risk we can take is to be honest with ourselves.” ~Walter Anderson     Things changed once I confronted the realization that I had been, like thousands of other men every year, a victim of the wave of “prostate snatchers” hysteria.   I had likely been “overtreated” for a favorable-risk case that probably didn’t need “immediate” aggressive treatment, and might have never needed treatment.   [I had negative DRE but a single, relatively low PSA test (under 10 ng/mL) which led to biopsy; 3+3 and 3+4 findings (low percentage) in just two cores out of 12.]   My own awakening came from a chain of learnings, triggered first by the understanding of the vast ubiquity of prostate cancer in our culture.   Two truths emerged:   i) PC is really two very different diseases, and ii) search hard enough and you will find prostate cancer as a natural part of aging in essentially all men.   My reply has changed as I have matured in my perspective.   I know that the “askers” of such simple questions as “How’s that cancer thing?” are probably mostly ignorant of even the basic truths I listed above.   But rather than keep them in ignorance, I now find those situations to be great teaching opportunities.   Since these men have not yet gone down the path that so many of us here have experienced, I’ve found that they are often receptive to the wisdom and experience of someone who has.     My response nowdays (as it was just last week when asked by a neighbor who is exactly my age) is more along the lines of, “My case probably didn’t need treatment.”   I went on last week to explain that   I probably didn’t have to go through all the angst, worry and fear that I went through.   The bigger picture of PC was not explained to me, and I was not exposed to the right resources to learn on my own that my case probably didn’t need treatment…all of my “research” at the time was devoted to finding “the best” aggressive treatment; not understanding how I could have potentially undertaken lifestyle changes (which I would have been open to!) to improve my overall longevity and probably slowed (or reversed) the low-level of “weird cells” in my prostate.   My neighbor now knows that prostate cancer is really two very different diseases; a lot of the favorable-risk cases, and a much smaller number of the high-risk cases; and he understands the ubiquity of PC.   Hopefully, if and when he runs into the set of circumstances which lead to looking for PC in him, he won’t over-react as I did.   I now have several friends, neighbors and acquaintances who have this knowledge.   And that is a response I am now very comfortable with.       Polonius:    This above all,—to thine own self be true; / And it must follow, as the night the day, / Thou canst not then be false to any man (Hamlet, Act I, scene iii).   Post Edited (JackH) : 8/26/2014 9:26:29 AM (GMT-6)

Great topic.

I think I've gotten the full range of comments already presented here. Everything from a "blank stare" to "that is no big deal, all men eventually get it and rarely does anyone die from it".

One friend insisted I hear+learn about someone they know who was "cured" of S4 lung cancer by a special diet while seemingly discounting that the person is currently going through yet another Kemo round. (obviously NOT cured but the diet may be helping them survive the treatments)

I suppose the USA 'national' groups are not of much help here ether. They have upgraded the 5 and 10yr survival rates for everything but the worse 1-2% of cases and seemingly discount things such as 'quality of life'.

With the overwhelming majority of reported cases involving long retired, retired or near retirement age men and the PCA was caught at a early (curable) stage complimented with low G and PSA scores its no small wonder where they get the survival rates from.

When we first found out one of our nosy talk a lot neighbors knocked on our door and wanted to chat and gossip about the neighborhood. Paul had answered and the woman was just rambling on and on. I could tell he had tuned her out so I stepped up to the doorway...

I told her that I was sorry that we were not feeling more social but Paul wasn't feeling well and we just found out that Paul had terminal cancer.... She didn't bat an eyelash and said that she had arthritis or something and rattling on and on about that. I felt like just slowly closing the door on her whilst still talking... oh wait- we pretty much did that but in a sort of nice way... she was still talking right through the crack then through the door as we were saying we were going to take a nap!!!

RickRed40 -

Good point about the insensitivity some people can show, although, to be charitable, most of them are probably speaking out of ignorance rather than malice. And it's just our human nature to remember the negative stuff sometimes.

Of course it's true that many people say many positive, encouraging things. In my own case I think the nicest thing ever said to me about my PCa situation came from my older boy one day, something he said that was completely simple but entirely touching.

Both of my sons (both adults) had and have been immensely helpful to me during all this: driving me to and back from biopsy, visiting me in the hospital during my TURP days, driving me to and back from radiation when I became fatigued, taking care of the house and bills, etc.

Then one day not long ago when I was sitting with the both of them in the living room, I just suddenly and very sincerely expressed my heartfelt gratitude to the both of them for all that they had been doing for me. Then Jeff my older boy said:

"Well, gosh, Dad, how could we not do all those things for you?"

Simple but profound, and most touching indeed.

I would sure count that as one of the good things to say to a person with cancer.

I find that when most people find out I had surgery they think I am cured and don't have the slightest idea about gleason score, lymph node invollvement, seminal vesicle invasion etc. Also, I appear fine on the outside and try not to reveal any ailments and I guess that furthers their belief that there is nothing truly wrong. So I just prefer not to discuss it with others.

This s a great post thanks for staring it. It still amazes me after over a year of dealing with PCa how many people know nothing about our cancer! I too would love to see something like they did for ALS this summer to help us, and other who will follow in our footsteps. There is not anything that anyone can say they makes it better and often than not they say something that is inappropriate. I was probably the same way before this thing took over my life. I think the organization Pints For Prostates is a step in the right direction...more beer!

Thanks again NYC if someone comes up with a great awareness plan let me know I'll help too. Like what Henry did on the Today Show earlier thus year with life exams.

Rick,
Since I can mention Walch's and Mulhall's book, I guess I can mention yours in case a newly diagnosed guy is reading .... "I left my Prostate in San Francisco .... Where's Yours?". Looks like a very useful book.

Go Spartans!

RCS,
You can mention the title I can't, and I understand why. This forum can't degenerate into threads of people promoting whatever it is they are selling. In some ways it's frustrating because there are very few books out there that deal with the emotional side, and relational side of prostate cancer specifically after a prostatectomy.

Jim I understand the need for rule #4 and will abide by it, even though sometimes it feels like a have a cup of water for someone who is thirsty but the rules state I can't share my water with you. Would it be possible for a single thread on the forum to be set up for book discussions with authors allowed to talk about their work? If not, once again, I understand.

RCS
I have a number of codes for kindle editions and I'd be glad to give away some of these codes to men/couples who are interested in reading the book. That said, I have a feeling we are violating rule #4 just by discussing this. I'll see if a forum administrator is interested in this possibility or whether they'd prefer to delete this conversation. I contacted UsToo and made them that offer. Thanks for the suggestion.

Now it's time to get back to the topic. I noticed that the majority of threads contained hurtful or unhelpful things. Only a few posts contained helpful comments.

I have to say that the overwhelming majority of helpful comments came from those I met on forums such as this.
I don't want to knock face to face support groups. They play a very important role in helping men and couples cope with PC. That said, I prefer the Internet. I found I could ask any question no matter how personal and more than one person would share their experiences. I'm a fan of on-line support!