HealingWell
Search Close Search
☰

I don't get it: Hoo-Ha tests & Inflated Doc Egos

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/25/2012 5:19 PM (GMT 0)
Yes but we have to try to avoid the flaming comments that lend credence to Bikerguys experience. Sometimes the best way to fix a perception is with gentle care and support. Sometimes it doesn't matter how you approach it and it cannot be fixed, but that isn't a good justification to skip the attempt. I know that sounds a bit hopeful in face of cynicism, but at the end of the day you go and come back to the thread it looks like we have done better before.

I will say that moderating this site is not an easy task unless you let the criticism roll off like water on a ducks back. I know I could do better as a moderator if I had more time to give but unfortunately I have a very busy schedule that no longer permits me to read every thread or moderate every out of line comment. I used to do that but as you see here we have had quite a bit of turnaround in the moderator roles through the years and I think my secret to still being here is the ability to not take anything personal no matter how personal someone gets.

The only part of Bikerguys post that bothers me is his own perception that we are of no help to him. But I see no reason to go on the defensive. If I've been to one site I've been to many PCa sites and this is as good as any I've visited. But that's my opinion and we know the true value of opinions not of our own...:-)

I only ask that our core members remember to let it roll off their backs too and move on to the next guys.

Peace

Tony
Posted 7/25/2012 5:47 PM (GMT 0)
...BillyMac said "I am sure you have witnessed some of the smugness of which Biker speaks. "my doc has a 1,000,000 ops under his belt so he's better than yours". Perhaps not so directly but the undercurrent is often there. "My way is better than yours" --- never quite in those term but often that implication is there. That is why the surgery Vs radiation debate often blows up, AS Vs active treatment discussions can often be toxic."

One of the things that I like when I first got here was that there were differing opinions and people felt strongly and debated with vigor. It gave me both sides of a debate. Then it was up to me to choose.
Posted 7/25/2012 5:53 PM (GMT 0)

Gleason 6 said...
One of the things that I like when I first got here was that there were differing opinions and people felt strongly and debated with vigor. It gave me both sides of a debate. Then it was up to me to choose.

Was curious, Gleason 6, about whether you thought anyone here misrepresented himself/herself as a doctor as it came time for you to make your own choice?   

Completely seperate question:  Did you find it valuable for the laypersons here at HW, in the course of the dialogue you mentioned, to provide you with information, data or results which was published by actual doctors specializing in prostate cancer?

Posted 7/25/2012 6:12 PM (GMT 0)
BikerGuy seems to be going through a rough patch just now and he was a little bit all over the map in his posting. But, despite his carpet-bombing imprecision, I think he was bothered by some postings that have irritated me, too.

My urologist is one of the busiest DaVinci guys in central NC. He teaches its use at a local med school. As far as I know he is well respected locally and is probably pretty good.

Diagnosing PC is a bit like watching a fan dancer -- you think there might be something there but it is kind of hard to see. My screening for PC started, actually, with a prostate infection that put me in the hospital for three days. It was during that hospital stay that I acquired a urologist. I had a high-ish PSA (about 1.4) but it could be explained by the infection or by lingering inflammation. So we did a couple of rounds of antibiotics and some Avodart to see if it wouldn't clear up. But the PSA kept creeping up. So we did a needle biopsy. It showed some inflammatory tissue but no cancer. PSA kept creeping up. Free vs bound PSA score not so good. Another biopsy. Negative again. Waited a bit more. A third biopsy. It came back with one core (out of 14) showing 3-4% of GS6(3+3) cancer. This result made me a good candidate for AS. I had recuts made from that biopsy and had a second pathologist look at it. He made it GS7(3+4) but he concurred with the 3-4% of the same single core. Now I was intermediate risk with (probably) a low volume. Still a candidate for AS but not as good as before. My uro laid out my options and left the choice to me. I saw a second urologist, head of the urology department at another local medical school. He strongly suggested AS. I told my urologist that I was leaning toward surgery because AS sounded like an endless series of biopsies (which I didn't like) and with all those biopsies my prostate was starting to seem like a high-maintenance organ and it could go.

His compromise was to wait a few months and do "another biopsy to see if it won't make you more comfortable with the idea of waiting." We did another biopsy (16 cores, as I recall) and it came back negative. On the other hand, my PSA was up to over 8 (but I had it a bit soon after the biopsy and that could have elevated the score.)

So, balanced on the edge of a razor I decided on surgery. As it turns out, I would have been better off if my urologist had been one of those shoot-from-the-hip guys who aggressively treats low-grade cancers. My post surgical pathology showed a large, aggressive GS9(4+5) cancer that was just in the process of growing outside the organ and it seems clear that I would have been better off if I had received treatment earlier.

So, while I understand that, statistically, there is a problem with over-treatment and/or premature treatment of low-risk prostate cancer, my own, admittedly-unusual, experience pushes me the other way.

And I do have to admit that some posters here make me cranky when they suggest that my urologist is a head-in-the-sand troglodyte and that I did a poor job in self-advocacy because I never flew off to Switzerland for a million dollar Tachyon Deflector Matrix Higgs Boson scan before I made the decision to treat my presumptively low-to-intermediate risk cancer.
Posted 7/25/2012 7:17 PM (GMT 0)
Tony, of course you are right.  Bikerguy, I hope you find peace and relief from whatever demons are driving your unhappiness.

Jim

Posted 7/25/2012 7:40 PM (GMT 0)
Casey,

No I did not think anyone here was a doctor or that anyone here represented themselves as a doctor.

I did look at the data that I was referred to, but certainly that was only part of the input that led me to my decision. I relied on data, the input I received from actual experiences and discussions from the questions I asked from the people here, and the doctors that I visited.
Posted 7/25/2012 9:21 PM (GMT 0)
Tony

Lots of good points.

But really nobody here, typing on a computer, should take things personally. We are all going through this PC emotional roller coaster. Some perhaps handle it better than others, but we are all on the same team.

Mel
Posted 7/25/2012 10:22 PM (GMT 0)

BillyMac said...
Well thank you davidg ----- I have learned a new word at near 65

didactic ----- inclined to teach or lecture others too much: a boring, didactic speaker.

Me also Bill---I goggled before I saw your post...DOH!

Gleason 6 said...
Casey,

No I did not think anyone here was a doctor or that anyone here represented themselves as a doctor.

I did look at the data that I was referred to, but certainly that was only part of the input that led me to my decision. I relied on data, the input I received from actual experiences and discussions from the questions I asked from the people here, and the doctors that I visited.

Same experience here. I joined a few months after G6.

Hope the op feels better today.
Posted 7/26/2012 1:25 AM (GMT 0)
I understand where Bike Guy is coming from in terms of it being difficult to hear things that undermine your confidence in the high stakes decisions we've all had to make.

I quit a good job with great medical benefits a couple of years ago to start my own business, and when my husband first got this diagnosis, I felt sick with regret that I'd done that -- that his outcome might be different because our insurance coverage (or our income) isn't what it once was. I remember reading posts and fearing that we might not be able to afford to do what might be "the best" option for him.

So I understand some of it -- we're all just making such hard decisions and no one knows as much as they need to, to make those decisions with perfect confidence. And we're doing it while dealing with intense emotions, and for many, while feeling like poop. It's hard, and anger like Biker Guy's isn't surprising.

Even so, I think the comments about hateful people are completely off base. I'm not really a part of it -- I'm new, I'm a wife, not the actual patient, etc. -- but I'm moved and impressed by what I see on this site. I see real friends taking care of each other.

I hope you see that some time soon, when in a calmer mood, or maybe with some other online or in person group.

best wishes
Posted 7/26/2012 2:33 PM (GMT 0)

BikerGuy said...
Guys,



You seem like a closed club of mean-spirited hateful people.

You have no right. What horrible moderators you have to promote such an environment of spiteful prejudice.

Rick

That's not true at all!! I don't have prostate cancer (dad died of it many years ago), but I come here and will fire away questions or comments and have always been treated kindly.
Posted 7/26/2012 10:35 PM (GMT 0)
I read biker's comments, and then his sig. Rising psa recently. That will set nerves off.

   Most everyone on here is scared, confused, angry, a myriad of emotions at some point in the journey. Emotions sometimes run high and raw. Why wouldn't they? Look at what we are all facing.

   If a person has a successful procedure, I don't see espousing it as bragging or putting another doc down, I see that as relief no matter how it comes across. Arguments or discussions sometimes happen, but I think when someone is going on about their choice they are just expressing their relief at some good news  and are wanting to share it and hoping others will have the same results maybe even with that person's provider.

    The same goes for bad news. Ive seen amazing support on this site. Im lucky, even a little guilty feeling about my own journey but Biker's stats and his comments show some self regret Id think. No need for any, we make our choices, take what we get from this monster and deal with the next step down the road. After almost 2 years on this site, I'd put the moral support shown here up against anyone, anywhere.

Posted 7/26/2012 11:04 PM (GMT 0)
While I agreed with Biker's original contentions (once I was able to figure out what he was really aiming for), I don't agree with the "hateful" part of his views, either. I will be here 4 years this October, and while there are some spats, arguments, strong disagreements, and the rare out and out flames at times, its still a community entrenched with a lot of care and support. The development and evolution of the "GFMPH" movement from here is living proof of that. Lifetime and lasting friendships have been and are being made through this.

But to be fair to Biker, and I think we should all factor this in, when one is fighting a major cancer or other disease, there are times, that despite manners and logic, sometimes the frustration, the anger, the anquish, the pain, the disapointments, can get to the best of us. I say this first hand, as there are time (and I fight so hard to control it), that my chronic pain gets the best of me, and I am on edge, and I am not at my best with diplomacy, etc. Perhaps Biker is really having a bad time in one of those areas. Not saying that gives anyone the right to be rude or crude, but it could be a reason behind the most ill parts of his post.

I believe in the thinking that you should forgive someone "seven times seventy times", and  that we should still support and encourage our PC brother, and hope that he sees better days ahead.

david in sc
Posted 7/28/2012 4:29 PM (GMT 0)
Interesting thread.

Biker's original posting was to me fascinating even if it seemed to be a bit "all over the place" yet still some good stuff was tossed out there for everyone to chew on here.

I actually "own" and moderate a very active internet Forum with multiple message boards dedicated to a specific team in a specific sport and the fan base is extremely passionate. So biker's post hit home with me and I must say I enjoyed his meandering rant. He said a lot and to me anyway, much of it was of some value...

*

This is a very good place. I am glad I found it and will continue to post when appropriate.

I am new here and it has helped me gain information, feel welcome and I take what is presented as opinion oft based on knowledge, experience and shared situations - hence the v-a-l-u-e but I certainly do not run with posts here as the 'gospel'.

Everyone is different in how they approach this subject - and even as one with what has been diagnosed recently as having 'aggressive metastatic' PC, I am an optimistic realist who will do my very best to be my own self-advocate as I move forward with this situation.


Bridgewater

__

Age 62, dx age 60, PSA 2.9 ; detected by dre
Stage t3b Gleason 7 (4 +3) tertiary pattern 5
11/10 Post-prostatectomy path: extensive extra-prostatic growth 60% tumor both lobes; perinural + l seminal vesicle and lympho-vascular tumor invasion; Lymph nodes:14 right obturator; 9 left pelvic (no regional lymph node metastasis)
10/11 adjuvant IGRT radiation 8 weeks
4/10/12 psa rise from 0.3;0.5;0.9 indicated ineffectiveness of SRT – on to medical oncology
5/30/12 negative bone scan; ct scan showing enlarged adrenal gland and 1 pelvic lymph node "involvement"...
6/5/12 initial meet with med oncologist began daily use of pomegranate extract; need baseline psa w/same protocols
6/5/12 psa 1.5…7/10/12 psa 2.0
7/17/12 doc confirmed diagnoses of “aggressive metastatic” pc; begin 50mg Casodex (Bicalutamide) for 6-7 weeks then new psa blood test + ctscan
Posted 7/28/2012 9:27 PM (GMT 0)
Well done, Bridgewater.

Spoken like a moderator, too. We have lot's of diversity here and sometimes you have to filter experience and opinion for what might best work for us all on an individual basis. I've been a sports fan for all my life (Go Angels, Kings, Lakers) and seen the sports comments postings at ESPN and many discussion boards. I'd like to think we post more maturely than the younger posters I see there ~ but not always.

Still there is value to what discussions take place here. For me when I got here it proved to be invaluable. Even still today.

Tony
Posted 7/28/2012 10:00 PM (GMT 0)
Well said, Tony.

I have peeked at some boards where anything goes, i.e. relegion, politics, etc, and they can be one big ugly fest, of which I will have no part with. Even my beloved New England Patriot's FB page really gets out of hand fast during NFL season.

In contrast, HW is well ran, well supported, and well moderated. No complaints from this member.

david
Posted 7/29/2012 4:41 PM (GMT 0)
1. Biker Guy made some valid points.
2. He went "over the top" in doing so.
3. There are some folks here who sometimes take themselves way too seriously......and also forget that not every patient has the resources to jump on a plane and fly off to see Dr._____________(fill in the blank) at the_____________(fill in the blank) clinic. That, however, does NOT make them mean spirited and hateful.

All the above said, this is a great site for information and support and well run by the moderators. And let's not forget that participation is strictly voluntary.

Joe
Posted 7/29/2012 8:11 PM (GMT 0)
In all honesty, I haven't found ANYONE on this board that is mean spirited and hateful. PERIOD. NOT EVEN CLOSE.

We are all under stress, especially those of us with rising PSAs, and probably almost all of us when we are about to do our PSA tests.

Sometimes this makes us testy/irritable.

I think we ALL back off when things get overheated.

I don't think you can find a better bunch of guys on HW

Mel

Posted 7/29/2012 8:33 PM (GMT 0)
Well, as a guy on HW, I would have to agree with that !

I just hate to see any one go away from here, particularly when they are mad.

Hopefully he will return, and allow us to understand exactly what set him off.

Goodlife
Posted 7/29/2012 9:17 PM (GMT 0)
Well, there have been less than a handful of guys here at HW, that were mean and hateful, but thanks to the moderators and Peter, they are no longer among us. Fortunately, they have been long gone before most of those commenting now were even here, and I hope it stays the way it is now.

I believe that we are all reasonably intelligent adults here, male and female, and share a myriad range of opinions, which is good. But as adults, no one needs to be talked down to, or even lectured, and I still find the most important of the unspoken rules of civilty on line to be, simply learn to agree to disagree -without taking it personaly. We should respect one another enough to be willing to do that. And I like to talk to people, the way I would like to be talked back to (no, I am hardly perfect - sometimes the pain slips through and I get a bit edgy). I think of us as being equals (or peers), and I don't view anyone here as a true expert, some more versed than others. There is something to be learned from everyone's experiences.

david
✚ New Topic ✚ Reply
12