What is it about PCa that scares/annoys you the most?

A serious topic, to be sure, but perhaps one helpful to discuss.

Identifying fears is a good way to overcome them, or at least to try and control them. Just the act itself of identifying fears may suggest specific steps that can be taken to alleviate them.

The fears I listed in the survey above are just some that came to mind as I was thinking about starting this thread. Of course there are others. Feel free to mention below any that you have found to be especially concerning, that you would like to bring up.

Again, talking about them may help to overcome them. Especially if we learn that others have had them as well, and have devised ways to deal with them.

Sometimes fears can be irrational. Maybe a discussion such as this one could help bring that out as well, and provide an opportunity to recognize that irrationality and root it out.

For example, until I thought about doing this thread, I didn't realize that I had one. A subconscious one at that. I was coming to realize in thinking about this thread that at some inner level I had actually been worrying about "the effect on my loved ones" (above survey choice) on my two sons. Which was silly, since they're both grown adults now with their own lives going, and both quite honestly (and fortunately) would do quite fine on their own without me. But that's sometimes the way dads and moms think when their kids are involved, that is, maybe not always so rationally.

But maybe that re-emphasizes the point above, that thinking about and identifying our fears regarding this beast, especially if we discover them to be irrational, is likely to be time well spent.

So it just might be helpful to shine some light on our fears and concerns, identify and talk about them, and that light and talk might just cause them to fade.

What do you think?

The biggest worry as with any cancer is an untimely death...

For me, the biggest issue is the uncertainty about where I stand now. It's been 18 months since my SRT and everything is good so far, but who knows what the future holds? Recurrence is possible eight to ten years later, making it hard for me to relax.

I picked other bc they all rank pretty darn close to each other. But if I had to choose, it would be an un-timley death.
I'm in limbo right now with intermittent therapy coming to an end due to rising PSA.
But I know I'm past the average length of time ADT continues to work.
So, it's pretty f'ing jittery for me right now.

I voted for #2, "the pain if it gets worse" because it had zero votes and seemed kind of lonely, and I felt sorry for it.

But honestly, I can only hope that my PCa is truly gone. I did everything possible to beat it and so far it's looking good. My only concern is when my testosterone returns, will the PSA return also. Most opinions say "no", and for that I am thankful. My sons are grown up and independent, and other than them, my family is rapidly shrinking due to other cancers. Not have enough time? I've done everything I'm going to do in life. So am I gonna build a boat or something?

How weird is this?
As a Vietnam vet with Agent Orange exposure my wife is entitled to widow's
benefits if I have the good sense to die of prostate cancer. But if I live for seven more years from now - 10 years total since I was rated for service connected prostate cancer - my wife qualifies for a widow's pension even if I die from a falling piano or the wrath of an unlikely jealous husband.

What worries me is not living 7 more years or dying sooner of something other than prostate cancer. There it is. Not pretty. But I don't make the rules.

This falls into the annoyance category--dealing with the way medicine is delivered now. I feel as if, on top of all the serious issues you're asking about in your questions, my husband is being processed by bots with no human overseer. Everything feels very fragmented--that many individuals only look at their little piece of the data, then pass it along so they're covered. Mind you, most of the doctors, specialists, and thePAs are very skilled, but we're all in a system with bad software or something. Here are two of several examples:

--A few years back, months after dx, my husband was urged to schedule a bladder biopsy the day before Thanksgiving. It wasn't an emergency, but the schedulers pushed for that particular day. We got no handout from the office about prepping for the procedure (which was performed at a stand-alone surgery facility owned by the urology group). He was in the operating room for three hours, came out with a catheter he had to have in for days. We were told none of this ahead of ttime and assumed it was going to be like the initial prostate biopsy. Not! The urologist told ME I could remove the catheter and that my husband didn't need to come in for the removal. I said, weakly: "I was an English major." (BTW, I did do the catheter removal by following YouTube!) The procedure and aftermath wrecked our plans at the last minute--we haven't got a whole lotta Thanksgivings left. Oh, the kicker: The lab lost the urine from the procedure, which was taken directly from the kidneys, one of the very reasons my husband was getting the procedure!!! No one gave him pain meds, which he needed. The whole thing was a ****show. We complained, but the response was tepid to say the least. Yet the marketing/PR departments in the hospital send out constant surveys that go into a black hole along with all the duplicate forms my husband has to fill out every visit anywhere. I think all those marketing people should be fired so they can use the budget for the medical staff to give patients, say, two additional more minutes with the PA or the onc per visit.

--Fast forward to last week. My husband's oncologist is at a major cancer center in Boston, a monthly two-hour shlep for us for what's usually a ten-minute visit, but he needs the big guns now. Last week his blood work came back with pretty out-of-range liver enzymes four months into Zytiga/Pred. We waited and waited for a call from the onc or his PA. Nothing. It took me eight tries to finally reach the PA about this. No apologies for missing this important change. She said she was going to put in an order right then for my husband to get blood work done this week at our local lab. (Local hospital is a satellite of the Boston hospital.) Guess what? The lab didn't receive the PA's order for the test!!! Now my husband has to call again. Honestly, sometimes this kind of stuff defeats him more than his advanced cancer does. He's very pro-active; we both are and don't need much hand holding. But we do need the system to be effective. How did they miss this? And how come that darn lab order didn't get into the portal or to the lab? Yes, we could change cancer centers, but it's late in the game to start all over. I do think everyone is too overworked, that some algorithm says they can "process" so many patients per hour, but they can't so stuff falls through. In short, the high-level expertise and standard of care has been there all along but the follow-through is too often scarily inept.

There. Vent over. Thank you for asking such good questions.

Spouse21, your rant is right on. I don't even want to think about the snafu's that occurred during my wife's lymphoma battle, which went on right in the middle of my own battle with PCa. Miscommunication and lost orders are probably at the top of the list. I'd go on but don't want to fall back down into the rabbit hole again.

Larry, yes I've mentioned here previously how UNINTERESTING any thread on ED can be to someone who is just happy to be alive but really misses simple things like going shopping without wearing a diaper or needing to bring along wet wipes, just in case.

Or being able to take a walk, or browse some shops while making sure I still have the stamina to get back to the car before my leg gives out. Ordering food in a restaurant, and I say no seasoning yet the meal comes out covered with pepper. These are some of the reasons I tend to just stay at home.

I think blackjack is right in pointing out that, likely at a subconscious level, I was thinking of the more serious PCa cases when I started this thread and posted the above survey. I think the survey questions make more sense in that context, as his comment suggests.

Also I want to say that I inadvertently omitted a survey question that occurred to me later, one so obvious that I really should have thought of it at the time of formulating the survey, and included it, but didn't (and I apologize for that). The question that really should have been there:

O dealing with treatment side effects

Maybe that comes under existing question "pain if it gets worse" a little bit, but it really should have been there on its own. I think it definitely would have gotten some votes.

Another comment. When I posted the survey I was really wondering to myself just what kind of pattern, if any, the answers would take. Would concern about dying from PCa be the dominant answer, or would there be a spread of replies among the possible answers?

Well, as of the time of this posting, the answer pattern is:

maybe dying from it some day - 26.1% - 6 votes
the pain if it gets worse - 8.7% - 2 votes
its effect on my loved ones - 13.0% - 3 votes
might make me a burden to others - 13.0% - 3 votes
less time to get things done - 8.7% - 2 votes
other - 30.4% - 7 votes

indicating an actual spread of replies, and apparently spread of thinking, on the question.

Interesting.

This does seem like a useful discussion, and hopefully is offering some food for thought.

Interesting to talk about this. I chose effects on loved ones. I live on a farm now and we have lots of work to do to maintain it so I worry what my wife will do if I die much earlier than her. And of course I worry for my children and grandchildren when the old bull is gone. I am very concerned about pain, too. So far I haven't had any even though I have a bone met. But I know pain is likely part of my future. But I have a doctor who is not afraid to give me pain medicine when I need it so I feel pretty confident that I will be able to manage pain when/if it comes. For five years of my career I was an oncologist so I've watched many people die of cancer. I was very free with pain medicine for them. So free that the state board called me once about it. But when I explained the case they were fine with the medicine being given in such high dose. I know from experience that pain can be controlled.

My surgery was a disaster. The odds of any one of the complications happening are low. The odds of all of them happening to one patient are minuscule. (We’re talkin’ on the hundredths of one percent here.).

I’ve never been a big fan of going to the doctor in the first place. Now, I distrust them as I would an enemy on a battlefield.

I paid someone to come to the hospital to pick me up. I paid people to help me the few weeks I needed help after the second hospitalization. It’s difficult. Doing that.

when I think of “more to come”, I get angry and freightened. It’s not something I’d want to go through alone. It’s not something I’d want to have to rely on paid help to help me through it. But...I don’t guess anyone gets everything they want. And yes, I have regrets for not fulfilling my own potential. I do feel as if I’ve “done it all”. I’ve lived a “big” life. Kinda difficult to come up with anything I’ve not done.

The Spector of dying is always in my psyche now. I feel like I’m my father. I never believed he’d live a long life. He died at 64 years of age. My body looks like his. I’m overweight like he was. I went from 180 lbs to 155 lbs after my surgery. It’s scary to lose that much weight. So, I began actively trying to put it back on by eating as many calories a day as possible. Now I’m 210 and haven’t lost it (it doesn’t come off like it used to). My eyes are always bloodshot like my dad’s were. I’m always doing (working on) things that have to be done but not fun things (like he did).

I feel alone. (Blue baby alone). And everyday is a fight to get others to do what I’m paying them to do. And there’s so much of my net worth at risk that I feel I have no choice. Just like my ‘ol father had. Like father like son I guess. (Only, he handled it with grace and dignity, neither of which are my greatest strengths).

Anyway, I don’t know what this has to do with the topic. Except, to repeat what my father once told me when he was about my age (e years before his death)...”Son, the best days of our family’s life is behind us.”

I guess this disease helps me to believe that.

Well, I'll try not to take the hatred personally.

I picked other. I've never associated my condition having an impact on my mortality. I am a year and a few months post-RALP and my PSA is zero. I have no reason to assume this won't remain that way. If things change, I'll deal with it then but I am certainly not going to worry about some future event that may or may not happen.

I am having an AUS installed the end of next week so, overall, I would label this entire saga an annoyance and interruption to things I was doing but I am rolling with it. I figure this is all good training for later when something more serious pops up.