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Awkwardness When Mentioning PCa?

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Posted 4/8/2022 4:30 PM (GMT 0)
I'm curious how others have handled this. I don't openly advertise my PCa, but the general subject can come up in casual conversations. I'm starting to avoid it because it all too often ends with the other person overreacting and then I have to explain that I'm almost certainly not going to die from this (although I might die WITH it). It seems that from the moment you mention the "C" word people jump to conclusions.

This is causing my behavior to change. For example, with my employer I'm planning on just saying that I'm having some "outpatient urological surgery" (for my RALP) and will be back at my desk (I work remotely) in a couple of days. I don't want to be known in the company as "the guy who has cancer".

Has anyone else run into this problem, and how did you deal with it?
Posted 4/8/2022 4:46 PM (GMT 0)
Never had any problem. Never offered the information except for family, close friends, business partners and a few clients. Just be calm and matter of fact with your condition and treatment and very positive. You will find several other people have had cancer that you never knew about.

And for goodness sake, cancer is nothing to be ashamed about. It is one of the leading causes of disease, treatment and death and all too common. Ask if they are following smart screening like PSA for men, mammogram and PAP for women and colonoscopy and skin cancer screening for all. The reactions will tell you how much detail is needed or even when to stop the conversation.
Posted 4/8/2022 4:51 PM (GMT 0)
I have read articles in the past that encouraged people to be open with their cancer/cancer diagnosis. I don't really recall the rational behind it. I guess maybe some people might benefit from the support they may receive from sharing it.

I have a friend from back in college who has posted his cancer diagnosis and treatment all over FB. I guess that's just not my style. I have informed people only a "need to know" basis -- family and close friends. Also, couple supervisors at workplaces.

Like you, whether it's rational or not, I don't want to be viewed as "the guy with cancer."
Posted 4/8/2022 5:39 PM (GMT 0)
i'm a recovering addict and i'm recovering from prostate cancer. i share either message at appropriate times. there's plenty of denial and misinformation associated with either illness and i'm not out to save anybody. i just share my experience when appropriate and my opinion.

how i'm viewed by others really doesn't bother me. it's more a reflection of the viewer because i'm cool with it
Posted 4/9/2022 2:10 PM (GMT 0)
When I was first diagnosed, I found it embarrassing to talk about, so never mentioned it. A couple months after my surgery, my mind was able to wrap around the experience and I no longer found it embarrassing. If it comes up, I freely discuss my experience and the value in routine medical exams, so conditions like this can be monitored and nipped in the bud if appropriate. about the same time that my yearly medical exam sent me on the PCa exploration trail, a friend’s sister found out she had breast cancer due to a pain in her shoulder. She hadn’t visited the doctor in 20 years, and died a month or so later. I have become a vocal advocate of preventative check-ups. I am self-employed so I don’t have the office politics to worry about, but, if it does come up, I freely discuss it with my clients, teammates, husbands of friends, etc.
Posted 4/9/2022 3:34 PM (GMT 0)
I was open about from the very beginning. I figured that if I had a sprained ankle, a detached retina, a hernia, or any number of other maladies I’d be open about it and I couldn’t see why this would be anything different. Plus, when I stop showing up with my running group, they’ll want to know what’s up. The only feedback I got that was questioning was one of my regular running partners told her husband and his reaction was “He shared that?!?!” I think it was more because it’s “down there” than because it’s cancer.
Posted 4/9/2022 5:19 PM (GMT 0)
I think each of us goes public in the way that works for all of us. In my workplace I was open about it, knowing that I was going to be off work for a while. And, I was surprised at how many of my co-workers (mostly males around my age) had questions, or experience of their own.

One thing I did run into was just how many people believe that "no one dies of PC" and "It's not a BAD cancer to have", and similar themes.
Posted 4/9/2022 5:58 PM (GMT 0)
With my experience of having UROs that didn’t act quickly, I have told every male I know to make sure they get regular PSA checks. That if they have urinary symptoms to advocate for themselves and get answers. I am not embarrassed to share my PC story to anyone that cares to listen. No one ever mentioned PC before I was DX. Now it seems that several of my neighbors and friends have finished treatment, but never told me. If it saves one life, I will gladly speak out. My best to all.
Jack
Posted 4/9/2022 6:24 PM (GMT 0)
Over the years we have had this discussion a few times on HW but it's always good to renew it especially for the newer members. The past discussions seemed to have been differentiated by three factors:

1. Introvert vs. Extrovert. Those that are usually more outgoing and talkative tend to share their PCa experience more openly.

2. Employed vs. Retired. Those that are currently employed tend to be a bit more hesitant about sharing for fear that their employer will somehow treat them differently if they are a cancer patient.

3. SE's vs. Non-SE's. Those with serious side effects such as ED or incontinence seem to be more hesitant because of the embarrassment factors involved.

Personally as an open book kind of guy who is retired without SE's I have discussed my PCa frequently over the years. Most all of my friends know I had it and was cured (OK, remission for you folks who don't like this C word). Those who want to discuss it a little more know I'm SE-free and know why I made the treatment choice I made. I'm proud to say that I have more than one friend or acquaintance who have gotten tested and discovered early stage PCa because of our discussions. Actually -- I'm not happy they had PCa -- but I am happy they found it and were able to make more educated treatment decisions when cure and options were still on the table. I'm also happy that I have two G6 friends who have successfully pursued AS for many years, largely due to the fact I was able to point out this option rather than suggesting they rush off to treatment. One is now 83 with 10 AS years behind him (and still with a healthy sex life or so he says!).

Before I had treatment I was able to discuss the cancer personally with a few friends AND my wife was able to discuss some private details with a couple of wives. We are both so thankful that those folks shared with us that we have tried to pay it forward over the years.

Jim
Posted 4/9/2022 7:07 PM (GMT 0)
I think one thing that surely needs to be pointed out, and a thing that has had a MAJOR impact on the sharing and spreading of information about PCa, and about cancer in general, is, simply, the existence of the Internet.

In pre-Internet days, the movement of information, cancer-related or otherwise, was limited by time and method of transmission, and so much of the time involved, or even required, face-to-face human contact.

But with the advent of, and continued streamlining, of the web, not only is the movement many times speedier and more efficient, but it can also be done much more anonymously, reducing the concern that some may have of drawing cancer-related attention to themselves.

It's now quite easy to share most any bit of personal data with, say, an electronic web forum, while in past times doing so in a room full of actual people would have proved very uncomfortable for some.
Posted 4/9/2022 7:54 PM (GMT 0)

Tudpock18 said...

Before I had treatment I was able to discuss the cancer personally with a few friends AND my wife was able to discuss some private details with a couple of wives. We are both so thankful that those folks shared with us that we have tried to pay it forward over the years.

Jim

That's about where we are at with this. Family completely knows, followed by selected friends and some wives my wife is close to. I was a little bit more open and talkative about this when I was first diagnosed a two or three months ago, but uncomfortable with some of the reactions so I clammed up. With some people, the moment you mention cancer (of any type) they act as if you're on death's doorstep and their outlook towards you changes. Professionally, I'm retired once and still working (consulting). This month I moved out of self-employment status and started work with a new consulting firm as an employee -- this was planned well before I knew about my PCa. All my work is remote and the RARP isn't going to create any significant time away from the office (my office is portable, anyway). And besides, I enjoy the work I do and actually need it as a welcome diversion while I recover from the RARP surgery. Anyway, I don't want the new company to overreact and think they just hired "the guy with cancer". I'll probably share my PCa status with the owner of the company and maybe a second-in-command, but keep it light and focused.
Posted 4/10/2022 2:23 AM (GMT 0)
My younger brother was a little dismissive at first then said “now that you explain it that way, that really sucks…” One of my sons said something similar. They think you just go and get it fixed and back to normal like a urinary infection. Not sure why they think PCa is the special cancer that does not obey the laws of other cancers but it is the “good cancer”, right? Never had any problems with the older men but the younger folks seemed to have not got the message about prostate cancer.
Posted 4/10/2022 2:34 AM (GMT 0)
we really do become the center of the universe when we are diagnosed with cancer. well at least in our minds
Posted 4/12/2022 10:13 PM (GMT 0)
I teach in an academic setting and have tenure. That may have affected my openness about my PCa. When I was going in for surgery I knew I would be out for at least two weeks and would need to get colleagues to fill in for my classes. So I sent an email to everyone in my department telling them what was going on. I had lots of volunteers to take my classes in my absence. Only two people ever talked to me about it; it's an awkward subject. It was much more awkward and weird when another male colleague was treated for breast cancer. When I needed salvage radiation a year later I kept that mostly to myself. No one ever knew. I don't think anyone ever treated me differently when they knew I had cancer. It may be that because so many men are treated successfully for PCa these days that many people think that PCa is no big deal.
Posted 4/13/2022 3:42 PM (GMT 0)
I have always, at least up until 2-3 years ago been very open about my PCa.
I used to message my family: sons, brothers, cousins, even the females about it.
Mostly I suggested getting a baseline PSA and then if all was normal, followup every 3-5 years.

I've stopped now because I got the feeling that many were turned off by my talk.
So, they've been informed and I only keep the closest to me apprised of my status.
Posted 4/13/2022 4:42 PM (GMT 0)
I've found it more helpful than not to share my Stage 4 cancer status. It's often an opportunity to share what I've learned and also talk about PSA testing, treatments etc. People have also been more willing to get together more often and that's probably the most valuable part. Too bad it takes something like that, but I'm getting to spend more time with people now that it's more of a priority.

The downside is the awkwardness of the situation and people feeling like they have to know what to say. That often ends up with things like "well, you look good" or "I'm so glad you got through this."

But I can put up with that for the benefits of sharing my situation.
Posted 4/13/2022 5:43 PM (GMT 0)
One in seven men will be diagnosed with PCa in their lifetime. PCa is the second leading cause of cancer death in men and more men will die of PCa this year then women will die of breast cancer. Early detection can save many lives and I have no problems discussing the subject.

We each have a story worth telling. Far too many men are diagnosed too late or make poorly informed treatment decisions.
Posted 4/13/2022 6:31 PM (GMT 0)
Starfinder,
Great to see you posting. I haven't seen you around here for a long time. I hope you're doing well.
Posted 4/13/2022 7:08 PM (GMT 0)

mattam said...
Starfinder,
Great to see you posting. I haven't seen you around here for a long time. I hope you're doing well.

Thanks.

I have been gone for quite a while, but just went over 5 years with stage 4. My most recent scan (last month) was a PSMA Pylarify and my doctor said it was almost completely clean except for one small spot. He said if I was new patient he would stage me MO. That's amazing considering my first T-99 bone scan lit up like a Christmas tree with a PSA in the hundreds.

Glad to still be around!
Posted 4/13/2022 7:15 PM (GMT 0)
I just said I'd be out for elective surgery, and came back a couple of weeks later. Unless you want to disclose more, they don't have to know any more at work.

Djin
Posted 4/13/2022 7:33 PM (GMT 0)
Starfinder,
I don't want highjack the thread, but I have to say that's great news! Really good to hear.
Posted 4/13/2022 8:40 PM (GMT 0)
I'm usually a pretty private person, but I've been fairly open about it. My coworkers and friends have been super supportive. The proprietors of my local watering hole commented about my having lost some weight and when I told them why, they were very supportive as well. The emotional support is a big deal in maintaining a positive attitude. Had I kept everything to myself, I would probably have become very depressed by now. That's just me. Everybody is different.
Posted 4/13/2022 8:46 PM (GMT 0)
I use it on my kids as a trump card.

“Why do I have to take out the trash?”
“Because I have cancer”
“Oh”
Posted 4/13/2022 10:31 PM (GMT 0)
I'm one of the lucky ones. When I was diagnosed, I was still working full-time (now part-time, same job). What made it easy for me was the fact that my boss had been through PCa diagnosis and surgery about 3 years before. He was able to be open about it with his senior management team (which includes me), so when I was diagnosed I not only had the communications roadmap to use, but also a mentor to walk the path with me. He chose surgery, I chose radiation (SBRT). He later confided in me that had SBRT been widely tested and available when he was diagnosed, he would have gone that route, too.

Fast forward about 5-6 years. I am a member of an "old, old boys" group of grade school/high school buddies who still get together every month or two for dinner and drinks. One of my long-time buddies was diagnosed, and we were able to have some very productive conversations as he was researching his own treatment path.

Next up was my daughter's father-in-law. When he announced his diagnosis to his sons, my son-in-law immediately had his dad contact me, and we have been carrying on a long-distance email conversation as he chooses his treatment.

My reason for mentioning these follow-on cases? I think it is more beneficial than not to be open about our own situation because that makes us more approachable by others following in our footsteps.
Posted 4/13/2022 10:56 PM (GMT 0)
I was very open about my initial diagnosis. As someone said above, everyone is different. I have a need to discuss it. When i recurred and decided to have salvage radition i was a little quieter about it, choosing my spots as to whom to talk to. I guess maybe because it was the kind of thing that might seem more serious to some people.
The benefit to me talking to much?..... i was able to be very proactive in helping two friends who were diagnosed. One of them was just diagnosed a month ago after years of PSA tests that rose, then dropped a bit, then rose some more. He is now planning treatment at MSKCC and will have Triple Play (for some reason they are calling it a trial) and he is finally in a good place mentally.

Another friend would have never been diagnosed except that i bugged him to get his PSA tested, which had never been done before at age 50 something. Thank God he tested which led to his diagnosis and so far successful treatment.

So there are benefits to having a big mouth
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