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

Replies will vary on this, of course, both on what to say and what not to say, and they'll all be right, but for me the most annoying thing one can ever say to one of us is:

"Be glad you got one of the good cancers."

I have to say, most people have responded in a caring and sensitive manner when I tell them. But there have been a few responses that were 'less than supportive.' A couple of years ago I wrote a longer response to the question in my blog. If you'd like my larger theories, read this: andrewsviewoftheweek.com/2012/01/29/what-to-say-to-a-cancer-patient

For most people, the word cancer implies the threat of death. Most people are more comfortable talking about sex--a formerly taboo subject--than the possibility of an untimely death. Once I announced to family, friends and co-workers that I had cancer (even when I explained that it was an early, treatable stage) they avoided any mention of prostate cancer in future conversations, as if I had the hanta or ebola virus.

Even on this forum, we don't like to talk about the ultimate price a man sometimes pays for prostate cancer. I suggested that we have a Memorial 'Sticky' to remember those of our number who have succumbed to the disease, and few favored it. I remember them individually instead--'Gordie', Bud (Raddad), Walter Whited, David Emerson, and many others. I'm not trying to be a dismalist, but idiot optimism is unhelpful in the face of life's realities.

Maybe if we had something catchy, like the ice bucket challenge for ALS, we might have more success in attracting research funds to prevent and treat prostate cancer. Any suggestions? I stopped wearing the sky blue wrist band some years ago, except for a few occasions in September--prostate cancer awareness month in the US--because there are so many colors and varieties of wrist bands out there that they are not a conversation-starter any longer.

My hope is that those friends and colleagues whom I told about my own prostate cancer will, despite the medical establishment's irresponsible gutting of routine PSA testing in the US and elsewhere, get tested and, if necessary, get treated.

Here's a link to an article about how to talk to someone who is dying of cancer

www.patheos.com/blogs/goodletters/2014/08/how-to-talk-to-the-dying/

Tim,
Great Blog. I blog as well. Can someone tell me how to use the formatting here? Every time I highlight something like this link the URL appears at the bottom of my post and the link doesn't work
http://whereisyourprostate.blogspot.com

Quincy
I'm with you. It's truly great if men and couples have friends that are willing to listen without offering ridiculousness advice, or sharing a horror story about someone with cancer that will keep you awake at night. Generally I don't share my experiences with PC unless someone asks. Usually asking means they want to actually listen.

Oh yeah, I heard "well if you have to get cancer, PC is the one to get". Part of this attitude is due to ignorance of the wide variety of severity of diagnoses and outcomes that can exist among PC patients.

There are a lot of G6 or lower out there who are going to probably die of something else no matter what treatment they have or if they have no treatment. The majority of PC patients that people know probably fall into this category, and they see them going about their lives seeming not much different, so they are thinking "OK, not pleasant, but what's the big deal compared to X(fill in the blank) cancer".

In fact I have an old friend here, I think he was maybe 51 or a few years younger at Dx. He had his surgery. He wore diapers for a while and never missed a day of work. He never acted like anything was wrong as far as I could tell. He had a penile implant. And within 5 years or less he died of a stroke, leaving 4 sons from grammar school to college. So I'm guessing folks know a lot of folks with PC, but don't know a lot of folks dieing from it compared to other cancers and other diseases.

But what they don't know is what even some of the G6s might be going through after treatment, or that there are other levels of PC that are not really smiley face cancers. They have no idea.

Post Edited (BillyBob@388) : 8/24/2014 2:02:48 PM (GMT-6)

Thanks
I'll try that on a post

Working part-time at a funeral home, as I do, whenever this question comes up I find myself thinking that if everyone had only perfect comments when told of a death or a cancer diagnosis, it would be a very quiet funeral home and very, very short conversations with our friends.

People generally do the best they can to show sympathy and express their concern, but the right words are very difficult to find, so I try not to worry about what comes out of people's mouths and more about what's in their hearts.

As others have mentioned, it's an uncomfortable subject for most people, and some will be offended by almost anything they say. I even understand the "good cancer" comment, though I also understand the pain that particular response can cause.

Comments by folks who are ignorant about PCa really don't bother me ... I figure they are trying to be helpful and just didn't know. The ones I find to be unhelpful are given by guys who have been treated and should know:
1. Being told how I should have been treated ... how's that going to help me, now?
2. Being told how great their treatment choices turned out ... I can understand bragging, but it really does not help me and if their results are better than mine it kind of hurts.

Good point, RCS,
Some of us can afford to travel for better care and some of us were lucky enough to be born in cites like Boston or Nashville with great facilities,I hear. Then again some are school teachers in Gallup NM who have no choice but the local hospital. As you said, sometimes people who have been treated expertly can make comments that hurt tho I'm sure that they did not mean to do so. I have felt sort of left out of these conversations and then I realize that I'm being selfish . . . I should be glad for them that they are improving not mad because my PSA keeps on rising.
This isn't easy to do but so far I've been pretty successful at it. My best trick is to remember that ADT causes mood swings and depression and chalk up my ill temper to that. So I will continue to wish the best for my brothers in this club . . . Q

Hi John,
That's an interesting POV. Not getting upset by other peoples ignorance. Ever? . . . Q

That is a tough one td, have you been able to get her to understand your point of view? I guess I'd handle it by saying," That's what -----says but my RO tells me it'll be a year or so before I really know. You know how some people are."
PCa is tricky to deal with other people crowding your space, especially if you are like me . . . I look healthy, still have a sense of humor, just same old Q as far as everyone can tell. My wife and family and of course forum members are the only ones that know there's a crab inside of me, biding it's time . . . Q

This is always a good topic in my opinion.

With me hitting the six year mark with PC, I can't say I have had anything but great support and encouragement from those I have encountered in real life. Most know little about PC or living with PC, with the exception of my next door neighbor (he's a PC guy).

Now when I dealt with my 3 bouts of porocarcinoma, since its so ultra ultra rare, no one ever knew what I was talking about, including many doctors. Just simply not enough known cases for anyone to have ever heard of it.

But, while on a consulting gig a few years back, assisting a firm with an audit, the outside auditor, very rude and disgusting, in the heat of "battle", thinking I was out of hearing room, announced when I was walking out of a conference room said that hoped that the cancer would kill me. That remark still stuns me to this day. Totally uncalled for, regardless of any business circumstances.