How many men in US live with metastatic prostate cancer?

I note that the initial topic question was...I wonder how many metastatic PC patients are living in the US? I propose that the reason that number seems so difficult to approach has a lot to do with the general public knowledge of PC. BC has a well organized, and well funded, PR campaign going for it. PC does not. We've talked about this many times in this forum. Even though more men are diagnosed with PC in a given year than women are diagnosed with BC...the "cancer publicity" game is all about BC.

It's just how it is, guys. Boobs are a lot more popular than prostates are ;)

We have our own ribbon too and the color is blue.

https://upload.wikimedia.org/wikipedia/en/7/7c/Blue_ribbon.jpg

We even have Prostate Cancer Awareness Month which is September. The only reason I know that is because I looked it up. I had never heard of it before, nor have I ever seen anyone wearing a blue ribbon.

I have both a BC (pink) and PCa (blue) Christmas tree ornament. I didn't know about the blue ribbon until I came to this forum. Beth, the PSA screenings are a part of our Health Fair and the charge is $25. Good luck in your lobbying efforts!

You know what surprises me?

Lack of participation in MOVEMBER here at HW/PC.

It's not for a lack of awareness. It's apathy.

When the predominant comment is, "Oh, no, I wouldn't look good in a moustache," that's apathy towards PC which causes one to completely miss the point--that goofy looking moustache starts conversations.

I too participated and received not one darn comment or question about it.

But I've come to the realization that it does zero good anyway. Why?

Because we aren't mom. We love our moms and that's great. But we are looked upon as MEN, we deal with crap, if we win-we live, if we lose-we die.

After my mother died, my brother got a tattoo saying Mom. No one ever gets a tattoo saying Dad.

The mother lobby has it over us so much we will never even come close to being seen.
My dear mother died with breast cancer. Women are so much better than men, maybe that's why we will never overcome the public image of men.

BTW - I am metastatic PCa and I don't give a darn about your whining and complaining of over treatment. At least you will live a long life just so you can constantly whine about your over treatment.

I was in a good mood until I read this thread, but someone, not sure who, but someone put rust in my nail bucket. But I'll clean off the rust and try again later.

Peace Brothers

alephnull, I wasn't thrilled with that turn in the thread either. We've smashed the treatment issue to death here more times than I care to count. It's quite tiresome.

I'll echo your grumpy assessment though. Most of us love our nurturing moms, and probably most respect our dads who love us, but challenge us to be our best. It's a different relationship, to be sure, but necessary.

Oh, and I've done this rant before too. Everyone loves boobies, our beautiful wives, mothers, daughters. But prostates? Who's heard of them? And if they have, then eww, they just make nasty stuff anyway. Breast cancer takes away something, someone, we all appreciate and adore. Prostate cancer? Well, maybe some old dude can't have sex anymore? How is that a problem; who cares? He might die soon? Cool, everyone wins (but him). Company wins, no more pension payments. SSA wins, no more payments to him, reduced payments to his widow. Health insurance wins, no more payments for medical care. Family wins, inheritance yay! Neighborhood wins, no old guy crabbing about his lawn. Kids win: no one to challenge them to achieve more, to aspire higher, to excel, to drive for success; no, just participation awards and applause "for trying".

Maybe the whole ickiness of prostate cancer is a reason there's a lack of information about it?

Alephnull,

Just to let you know there's at least one guy out here supportive of your rant. I too fell through the "don't screen for PC" cracks. I'm most probably metastic and had an opportunity to be screened two years prior to my diagnosis but turned it down due to the new screening recommendations. I often wonder if I would be metastatic now if I had been screened two years earlier. I think that many of us with mets were essentially sacrificed to protect others from over treatment by irresponsible doctors.

I guess JackH deleted his post replying to alephnull, which prompted my post of support to alephnull. Oh well....

alephnull said...
I am metastatic PCa and I don't give a darn about your whining and complaining of over treatment. At least you will live a long life just so you can constantly whine about your over treatment.

I'm genuinely sorry about your advanced case. I know intimately about advanced, metastatic cancer cases. If I was in your shoes, I might also have your "It's all about me" and "to hell with you" attitude, too. Being not in your shoes, I have nothing but empathy for the brothers with advanced cases...you included.

I think that we do a terrible disservice to BOTH groups of men—the men at both ends of the prostate cancer disease spectrum by blending them together, which essentially "averages" them all as a group out of convenience under the same name—yet they are really soooo far apart. We do both a disservice for different reasons. If you're in the "to hell with you" mode, it's probably hard to grasp that there are indeed two sides...but I'll describe both.

The "averaging" sugar-coats your case & other aggressive cases, and makes them not seem so bad. The result is that people hear that you have "prostate cancer" and all they think about (because of the bad name that overtreatment has given PC) is that this is the disease that makes you incontinent and impotent. The "averaging" pulls down awareness of the seriousness of the aggressive, potentially deadly versions of PC. You got the "lucky" cancer. Have you heard that one? Advanced cases are a small percentage of the men diagnosed with the disease, but 26K men will die every year in the US from PC. That's a lot. I have empathy for your "It's all about me" attitude...it's an understandable fight for survival (literally and figuratively amongst the much larger set of all PC patients).

On the other hand, for low-risk guys, this same "averaging" also irrationally elevates men's "cancer" fears and leads to the epidemic of overtreatment which we've experienced. Low-risk PC or PC overtreatment isn't going to kill you, but we've all seen the devastating effect (right here on the pages of HW/PC) that the life-changing side effects can have on some men. (I've genuinely been scared that some guys were on the verge of seriously hurting themselves.) There's the famous quote from Dr Willet Whitmore who said, "The patient may not be dead but wishes he was." This situation is a disservice to men whose lives are really threatened by PC. Low-risk cases got "branded" with the "cancer" label...and the resulting over-reaction was quite natural given how our society has conditioned responses. But we have done a disservice to men by scaring them into unnecessary action. The word "cancer" should be reserved for a disease that can kill.

So, I'm still continuing to support you and others in your advanced PC boat, but until recently not many else were speaking loudly for the (much larger group, as we've seen the number for in this thread, of) men who end up suffering unnecessarily with an "elective" overtreatment for a so-called "cancer" that was never going to kill them. I'm not going to put down one group and only support the other. I can do two things at once...walk and chew gum.

Continued best wishes with your case, alephnull.

Post Edited (JackH) : 6/2/2017 2:05:28 PM (GMT-6)

JackH said...
So, I'm still continuing to support you and others in your advanced PC boat, but until recently not many else were speaking loudly for the (much larger group, as we've seen the number for in this thread, of) men who end up suffering unnecessarily with an "elective" overtreatment for a so-called "cancer" that was never going to kill them.

We all have to remember, their suffering is just as real as the advanced cases such as mine. Thanks for pointing this out. It's important. Having many, many years of reduced quality of life sucks too. And it was that kind of long-term suffering that helped me make my decision, right or wrong.

Just a couple of comments about things that came up here...

1) My cancer treatment facility (Siteman) has a big day at Busch Stadium where people can get tickets to a Cardinals game in the same section, tee shirts, hats, etc. The hats all had the STL logo on the front and the particular cancer colored ribbon on the side. Mine was the light blue. Unscientifically, I think there were more folks there with light blue than any other color.

2) Movember - I don't participate in the whole mustache/beard growth thing, because I can't. The lack of testosterone from the Lupron shots makes my facial hair grow incredibly slow. I only shave a couple of times a month. I find it a little ironic and disappointing about that particular choice of ways to bring awareness to the general community of our illness being one that I can't even participate in.

gmoose2 said...

2) Movember - I don't participate in the whole mustache/beard growth thing, because I can't. The lack of testosterone from the Lupron shots makes my facial hair grow incredibly slow. I only shave a couple of times a month. I find it a little ironic and disappointing about that particular choice of ways to bring awareness to the general community of our illness being one that I can't even participate in.

I agree gmoose2 that there's an unfortunate irony in Movember. You get a "pass." Yours is not apathy.