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Helping spread the word about PC can be discouraging

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Posted 10/29/2018 5:38 PM (GMT 0)
I started to reply this to a post started by P34 titled "Don't be me". Thank you P34 for your reflections of your journey .I didn't want to hijack your thread so I started a new one.
I would say that pretty much anyone that reads this will automatically recall in their minds their own journeys and could probably tell of wanting to spread the word to as many as they could on how important it is to have regular check ups and have PSA checks.
After my Dx I recall the comments. "your lucky it's only PC" and "oh my Dr doesn't believe in PSA testing" Even from my brother and my best friend! I felt shocked, and thought.... well.... OK? Don't they realize how serious my Dx is? Don't they realize this could effect them?
The fact is they don't for many reasons.
For starters..."overtreatment" of low risk PC after the discovery of the PSA test has swung the pendulum way over to the other side, and that's not good
Another is ….it's cancer we are talking about. I think that people don't want to think about or are in denial that cancer can happen to them. There are many in my life that never want to acknowledge the fact that I have been Dx'd with cancer. They couldn't/can't talk about it. It's uncomfortable.They don't know what to say. They will say "how you doing?" or "How you feeling?" I know what they mean and I'll reply something like …"I'm feeling good" and that will pretty much be it and that's OK. A few of my acquaintances who I thought were good friends have just disappeared. Haven't heard from them at all since Dx.
People don't want to talk about "CANCER".... I understand...I was one of those people. What do you say? It's scary.
Back ten years ago my wife convinced me to get a colonoscopy. Didn't want it ...Didn't need it....Don't want that done to me period!!! I ended up also getting an endoscopy..... They found a very large tumor in my small intestine. Had it resected.Spent 10 days in the hospital. Thank God it wasn't cancer! Could have been, would have been had it not been found! I'm telling this story because after I healed I told my oldest brother "you know ...you should have an endoscopy. This type of thing runs in families." His response to me was ....If it gets me,it gets me.........It got him.... and he died from cancer of the mouth and throat. I didn't understand. Couldn't figure it out. Now I am beginning to understand. It isn't always pride....It isn't always the money....
it's mostly "FEAR"

My best friend, finally had his PSA checked. It has been rising steady for 2 years now and it is up 16.5 . He has had 2 negetive biopsies . MRI showed pi-rad 5. He is now facing a saturation biopsy. He told me the other evening he isn't sure he is going continue going through these biopsies especially a saturation Bx. It's a tough situation. He said he will wait and if it gets worse he will deal with it then.......I argue with him to find another URO. Stop going to the guy I just fired... the guy that didn't even know what treatment I had ...... I didn't have surgery!!! I tell him to find a PC specialist and give him the name of the guy I found in Seattle. My friend says..." It's up to God".....I'm a man of faith... but COME ON!
I get frustrated at how PC gets minimized. Most guys I talk to really don't want to hear it. They will tell me of a friend who had it and had surgery and has never looked back and that's correct. Not many high risk guys. I guess I might feel different if I wasn't a high risk G9. I guess it's not up to me how guys will take my suggestions. Maybe I just need to tell them my story and hope that they will "get it ".That it is important to be checked.
I'm frustrated that my friend is starting to minimize his situation. I don't want to be that guy that tells him what he needs to do and sound like I know it all, because I know I don't.........I just don't want him to end up like my brother.
Battle On Brothers!

The Artistic One - Mark
Posted 10/29/2018 6:08 PM (GMT 0)
Mark, I love your passion. I feel it. It's tough to interest guys in anything to do with doctors, in general. The women in our lives usually coerce us into seeing a doctor, because otherwise I'm not going to one unless I have a really serious problem. Like, something moves that shouldn't, or won't move that should. Major, or forget it.

Publicly, prostate cancer has a huge PR problem. The 2012 USPSTF recommendation against PSA screening only reinforced the male "put it off" mindset that already existed. That whole conversation, and it was going on well before 2012, was one reason I didn't bother to have any PSA tests from age 51 to 55. It had been up, it had gone down, and no one was concerned since it was running around 2 for a couple years. It wasn't until I consented to a physical finally at age 55 that it was checked again, and then the fun began.

Also, think about it. When I told my lab guys I'd been diagnosed, one of them laughed, pointed at me, and said, "Ha! You're going to get boobs!". Now, that guy's a donkey anyway, but is it really surprising? That's the kind of support men can expect if diagnosed with PCa. It's nothing like women with breast cancer. And our treatments? Sure, let's brag about that, shall we? General side effects are varying degrees of incontinence, ED, fatigue, weight gain, shrinking genitals, and yes even getting boobs to some degree. Surgery, radiation, chemical castration, surgical castration, wonderful discussions to have around the break room coffee pot, eh?

Do we wear cute head scarves, signaling chemo and causing others to rally around us for support? Nope. We hide it. We hide everything. Smile. "I'm fine". "Dealing with my new normal, boss. I'm great. How about some extra work now?".

So with that as the likely outcome, is anyone surprised that men would not be interested in seeking diagnosis and treatment for PCa? It's entirely likely a lot of them (most?) are happy to roll the dice, deal with it if something does come up, die of it if it's bad enough. Maybe all of that is better than living with the diagnosis and treatments.

Even when the treatments are over, we may not get over the treatments.

Talk to those you can. But don't stress yourself out about the reactions of others. It's complex, and you have your hands full just dealing with your own situation. You can help here, on forums like this, sometimes. Some people. But if I may suggest, don't take on too much responsibility for the actions of others. Your heart's in the right place, but it's just not that simple.
Posted 10/29/2018 7:29 PM (GMT 0)
I just wanted to add because my husband told friends about his diagnosis, one of those friends found himself agreeing to a PSA test that he may (or may not have) agreed to before. He has never told us any details, but he was diagnosed and had surgery within 6 weeks of his biopsy. They were about to loose their insurance so he just jumped in with both feet. Last I heard he was doing okay and no mention of further treatments but like I said, he's not much on sharing details.

So continue the conversation. Like the old saying goes: You can lead a horse to water but you can't make him drink. My addition is someday he might remember what was said and act on it.
Posted 10/29/2018 8:20 PM (GMT 0)
Mark - If the fire of your passion ignites just one tiny candle. . . another life may be preserved. Whatever we can do is worth doing. We can't force others to act, but I feel we must continue to spread the word. Those who take the initiative will reap the benefit. For the others, it was their own choice.
Posted 10/29/2018 8:24 PM (GMT 0)
It's difficult, but it needs to be done.

As hard as it is.

Andrew
Posted 10/29/2018 9:52 PM (GMT 0)
i'm a recovering addict so I can get doubly discouraged at times. most of the time though I realize i'm powerless over what other people do. the only thing I can do is carry the message and then it's out of my hands.
Posted 10/29/2018 11:18 PM (GMT 0)
F8, also being in recovery I know exactly what you are saying. The ironic thing is the friend I'm referring to has been my sponsor for 27 yrs.
Posted 10/29/2018 11:26 PM (GMT 0)
It's always been surprising to me that none of my friends has ever mentioned if they've had their PSA tested, or if they know what it is. It seems like a logical thing to bring up with me..."hey, I had my physical the other day and my PSA was only X.X" or something like that. I don't feel like I should ever ask them, but maybe I should...

Nice post Mark!
Posted 10/29/2018 11:55 PM (GMT 0)
Mark,

Thanks for starting this thread, I've had similar thoughts recently as well. I think there are multiple parts to this puzzle, and they have different solutions.

First we have to deal with the very real--and somewhat created by the very medical community we are a part of--construct that PC is "the good cancer". This is real. There is a perception, and not entirely surprising, that PC is good-if such a thing is linguistically possible-because it's not a cancer that kills virtually everyone within months or a year. And, it's true. PC is rarely a fast killer. And, it is treatable, for the most part, without a lot of external symptoms of treatment. The medical publicists don't help, when they counsel against screening, for example.

Second, we have "the guy thing" going on. We're guys. We don't do marches, and ribbons, and go on talk shows, and so on. That's not how we do it. And I'm not sure it would accomplish much if we did. What we can do, as Mark suggests, is talk to other guys one on one. Tell our stories. Hope someone listens. Some do.

I don't have a lot of good answers.
Posted 10/29/2018 11:58 PM (GMT 0)
By your living or dying example. Denial is powerful
Posted 10/30/2018 12:09 AM (GMT 0)
We have a real example from the UK. Two celebrities Bill Turnbull (not globally known) and Stephen Fry (bigger name) both went public earlier this year. The effect was dramatic. The NHS missed its cancer referral times due to the rush of referrals. Men started to get checked out and probably more importantly their partners made them get checked out.

The effect at university college hospital London (major urology/oncology teaching school) was dramatic. RALP surgery times went up to 8 plus weeks from 5 weeks. Biopsy wait times and pathology wait times doubled.

Yes. I want every man to stand up and say I have PCa as publicly as possible. In my office I only got tested because the guys were competitively trading PSA stats like they were marathon times. I thought I would join in for the fun - that decision may have extended my life span.

Keep on, get the word out
Fresh

Post Edited (Fresh) : 10/29/2018 6:12:37 PM (GMT-6)

Posted 10/30/2018 12:09 AM (GMT 0)
hey Mark....good to see you back....great post !!!!....we all need to get on the band wagon next month .....David
Posted 10/30/2018 12:15 AM (GMT 0)
My feeling is that trying to encourage screenings is just about futile. For all of the reasons already stated, guys generally are not of a mind to be concerned about it. I believe Mark is correct that the pendulum has swing way too far the other way. Maybe someday the pendulum lands in the middle. In the meantime, I fear that a whole generation of men with advanced PCa will be coming here for support, and they will be wondering how this mess happened.
Posted 10/30/2018 12:48 AM (GMT 0)
In all the back and forth about screening over the last 10 years, it's easy to forget just how revolutionary the PSA test was when it showed up in the late 1980's. Before that, there was literally nothing beyond the DRE. Men who developed real symptoms, frequently way to late to do anything about it, were dying. Before that, the only men who had any form of prostate treatment were those with urinary problems, and they had TURP procedures (commonly called the roto-rooter). Some men were diagnosed with cancer that way.

Then the PSA came on the scene. It offered hope of early detection--and it may have been overused--and it likely was, but it also gave hope--a powerful thing. I don't know when the TRUS biopsy came on the scene--I'm thinking it wasn't that long ago, does anyone?

The good news is, that even with the reduction in screening, our diagnostic tools are getting better. Fusion biopsies. 3T and now 4T MRI's. Genetic testing. PHI tests. Maybe someday PSA will be seen as quaint..but an important first step to what is current whenever that future comes.
Posted 10/30/2018 11:51 AM (GMT 0)
Mark keep up the good work. I devoted a couple of my newspaper columns to it. A old coworker who was always a jerk spotted me in a checkout line and pointed to my crotch " I read in the paper you have problems down there." http://www.santafenewmexican.com/news/health_and_science/for-prostate-cancer-older-men-should-consider-test/article_2ab52365-b10d-5252-bb6a-4aa4eb0003b4.html The recommendation that PSA screening should be mostly considered only for men aged 55-69 makes little sense. Autopsy results reveal that 85% of men have atypical cells in their prostate glands and 1 in 4 has cancer. Aging men cannot ignore this problem as they can expect live longer than the men in prior studies. If you are going to end up dealing with something later in life it may be better to have it taken care of now or at least activity watch what is happening rather than burying your head in the sand.

68 yrs., marathon runner, 25 of 44 3D-CRT/IMRT Radiation delivered via 3D-CRT in 1.8 Gy minimum dose fractions to a total of 79.2 Gy., 10.5.18. PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, testosterone <.7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI w/ contrast 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 93 yrs. Neurogenic bladder due to lumbar disk disease and recurrent bladder neck contracture with urinary retention man. 20 years doing catheterizations. TURP & scaring 2003, Finasteride 5 milligrams daily since 2002.
Posted 10/30/2018 12:59 PM (GMT 0)
When most men (and public I would guess) think prostate cancer they automatically think impotence. So men aren’t really going to get treated for something that is going to potentially end that part of their life if they can help it. Most of us here know that’s not necessarily true but who wants to take the chance...
Posted 10/30/2018 1:20 PM (GMT 0)
Discouraging? Blah...you're in luck: LINK

Now is a great time—in fact it's the best time—to get off the sidelines and help spread awareness of prostate cancer and men's health.
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