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gold horse
Regular Member


Date Joined Nov 2009
Total Posts : 360
   Posted 8/29/2010 5:06 PM (GMT -6)   
Hi every one hope you are doing fine.I just need to vent out.
In my opinion we are here to help and support each other,we are not doctors and we need to respect the opinion of all
the members in here thanks. tongue

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3747
   Posted 8/29/2010 5:58 PM (GMT -6)   
In order for people to get both sides of the story, certain opinions put forth by members need to be challenged, or at least discussed in more detail... In a few threads, these discussions can get lively..This is a very healthy thing and should be encouraged, not discouraged...

Cheerleading questionable data and treatments when other therapy's and treatments have been proven to work better or with less risk does not benefit other members when it goes unquestioned...
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 8/29/2010 6:57 PM (GMT -6)   
Good grief!!
 
What is the big deal???
 
There is nothing whatsoever wrong with disagreements. I've been on assorted groups where politics and religion come up and I can assure you some of the nicer posts there are far more nasty than anything here.
 
Frankly, I have found this group to be wonderfully supportive, beyond all expectations.
 
Folks here have been great.
 
Disagreements are indeed healthy.
 
If you want everyone to agree totally and be super nice you need to go to the StepfordHusbandsPCSupportGroup.com
 
 
Mel
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. Next PSA late Sept.

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 8/29/2010 7:23 PM (GMT -6)   
Yep, I agree with Mel. Only would add that we can disagree in a respectful tone, which is usually the rule on this forum. Read your post before you send it, and is it said in the way that you would want a reply sent to you. I've sent out about 4 emails in my life which I wish that I could have taken back. LOL, live and learn. Just add those to the rest of my bobbles.
Michael

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/29/2010 7:28 PM (GMT -6)   
I think that most disagreements or angry situations here result from guys taking offense to suggestions from other members.

We are a bunch of guys here ( patients anyway ). We aren't necessarily known for tact or polite manners of speaking. Some of us are worse than others.

Some times the truth or straight talk is offensive. If we can't accept it in the general manner in which it is given, then perhaps this isn't the place to bare our souls and our medical histories. It is bound to solicit uninvited comment.

One recent poster who was thought rude and offensive, said it best. That it was from his heart. If people can't share from their heart without making someone angry, hurt, or offended, then the value of this site may be diminished.

When we get an apparent rude comment, we just need to sit back and think about it for a while, before dashing off a retort.

As a general rule, we are all brothers in this war and care for each other. Let's try to remember that, and I think our level of discord will be reduced.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

gold horse
Regular Member


Date Joined Nov 2009
Total Posts : 360
   Posted 8/29/2010 8:13 PM (GMT -6)   
Michel I never ask for any replay to be send to my e-mail.you said right we need to dissagre,but in a respectfull maner. yeah

Postop
Regular Member


Date Joined Feb 2010
Total Posts : 385
   Posted 8/29/2010 9:30 PM (GMT -6)   
Well, this site is a support group, we are supposed to encourage each other. On the other hand, people come looking here for information. Maybe the internet isn't the greatest place to look for medical information, because a lot of information on it is wrong, but that's what many people do. There is truth and untruth all mixed together.

Prostate cancer is an incredibly difficult subject. Even the doctors have a lot of uncertainties about the right treatments. A lot of times they seem to leave major treatment decisions up to us. Many prostate cancer patients go through the process of trying to research the disease and understand it the best that we can. Lots of people here have done this.

So it's inevitable that we develop opinions about the disease and get in discussions where we play amateur medical scientist and trade these ideas back and forth, and push back a bit when we don't agree. Also, many of us are biased about the treatments that we've gotten. We've paid a price in blood, sweat and urine for our choice, and no one wants to think that they didn't make the best possible decision.

I think this is actually very good, as long as we talk about facts and not make it personal. I think that there is a lot of good information here, and a lot of important questions are being asked. I've looked at a few of the other HW forums, on different medical conditions that I know something about, and find a lot of misinformation--it's kind of appalling. I think the prostate cancer group is much more thoughtful and better informed, because we've all had to research the condition to make our own treatment decisions.

Since a lot of people read this forum, we have a responsibility to respectfully ask questions or comment when we don't agree with something that has been said. There are people lurking and reading this forum, and, god help us, we might influence their treatment decisions. So, we have to get it right. Also, there have to be constant reminders not to listen us, but to read books and articles, and to consult with the best doctors.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 8/29/2010 10:39 PM (GMT -6)   
Let me add 2 other points.
 
When I first started seriously perusing HW, I gained a lot of knowledge. It also became apparent that certain folks had particular axes to grind. There are those who expouse only surgery. Others are anti-surgery. Some are overly suspicious of the medical establishment and others believe doctors can do no wrong. As was mentioned in a previous response, we tend to favor the treatment we had. But overall the axe-grinders kind of cancelled each other out and eventually, by carefully reading the responses to my many threads, I became a much more informed patient. Incidentally, I dearsay that everyone on here means well. It was also most helpful to read of people's experiences, their PC journeys. Although I believe most doctors try to fully inform patients of side effects of their treatments, this forum can definitely fill in any gaps.
 
My second point is this: we are all struggling with our disease. We are all fighting depression/anxiety to some degree. This means we are on somewhat of a roller coaster (I suspect a steep one if that is a side effect to your treatment). Anyway, our mood or our fears might well impact what we write here. Some of us over-react or are overly sensitive. I know sometimes I take umbrage at some point and I know others might not appreciate my comments. But I take all of that as something that goes with the territory called PC. This is still a family. None of us chose to be part of this family, but we all share this disease and we all support each other as best we can in our own way.
 
OK-- I think I've blabbed enough and used up enough bandwith! I'd better get to sleep. I have to work tomorrow.
 
Mel

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/30/2010 5:12 AM (GMT -6)   
So how long did it take for me to get cancelled out???? smilewinkgrin   (I did notice thru cyber space)
 
Goodlife- liked what you had to say on that
 
Mel- labels even mentioned are ones bias and not righteous, someone may judge you too and so keep it to yourself in  r-e-s-p-e-c-t  like Aretha Franklin sings (not urethra franklin-makes one feel little soggy for some reason) probably helps the respect thread in general.  I supported your decision in seeing Dr. Menon if you remember and didn't try talking you away from such.  Best to you.

Post Edited (zufus) : 8/30/2010 5:35:52 AM (GMT-6)


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 8/30/2010 6:16 AM (GMT -6)   
Zufus:
 
I enjoyed your response. It contains a lot of wisdom. My post was not meant to insult anyone.
 
However, my point is that it helps to read a totality of posts and then draw conclusions. There is a lot of knowledge on HW. Unfortunately, PC is so unpredictable. That is why we have so many opinions. What works for one person could be disastrous for another. Studies still contradict each other. There is plenty of disagreement among the experts. 
 
 
I do enjoy reading your posts. More importantly, you are extremely knowledgeable. I suspect, as I continue this PC journey, I will be asking you plenty of questions.
 
I do not regret my tx. decision.
 
Mel

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/30/2010 8:40 AM (GMT -6)   
I had posted early to this thread, then retracted my own post. Thought about it some more.

After being here nearly 2 years, my take on it is simple actually:

- Treat people the same way you want to be treated back
- Actually read the rules of conduct at HW and try to abide by all of them, not just the ones you agree with
- Have true empathy and sympathy for those here, you really don't know the true pain and suffering of any one person on a particular day
- Leave the normal "macho" attitudes, Type "A" personalities, my dick is bigger than your dick attitudes at the front desk
- Absolutely learn to agree to disagree and still be able to shake the hand of the person you disagree with
- Even if you spend all day researching hundreds of PC related and medical related sites, and read every book on the subject, and/or have
connections to someone with higher knowledge: this still doesn't make you a doctor or medical expert, just makes you more informed
- Every person is entitled equally to their opinion
- Suggest, perhaps, but never tell someone what to do, or belittle their choice. Its their live, their body, and their cancer.
- And when you think you are dx. a case here, remember, you only know a tiny bit of the medical facts about that person, only based on
what they have disclosed, and that is based assuming they are telling the truth.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 8/30/2010 8:58 AM (GMT -6)   
I might agree with David here - but I'm already sure mine is the smallest after all it has suffered.

I might also add -
Please do not assume everyone, or even anyone for that matter, has the financial resources to go outside of their insurance for extra services or lots of opinions. I've got the plan I've got (no choice about it), and others have better, worse, less, or nothing at all. I did ask to have a post removed because someone asserted that I might be stupid for not having done certain things before surgery. Two problems there:
1) I did not have the information about them until after the fact (I didn't know about this site until after surgery)
2) If I had known, they are still not covered, so would not have been an option. I couldn't get more than a 6 core biopsy paid for. Bostwick wrote off the remaining 6 as a good will gesture.

Oh well, just a vent on the money side of all this -
Best suggestion is to not find out you have PCa until you're well insured or on medicare. The anxiety of seeing bills in the mailbox is worse than a PSA test for me.
My IGRT journey -
www.healingwell.com/community/default.aspx?f=35&m=1756808

NEIrish
Regular Member


Date Joined Aug 2010
Total Posts : 245
   Posted 8/30/2010 9:07 AM (GMT -6)   
And from a wife who stayed up late to find hardcore info from men who had lived through (and in many cases what they are still living through) what my husband is now experiencing about 9 wks. post surg., this site has been a huge comfort. I'd find the responses that would alleviate his anxiety (fear, too) and get him to the computer to read them. He wasn't alone, and for that I'm very, very grateful. Somehow, in addition to frustration the disease's treatment options caused, the very fact that the guys would disagree in their responses to each other was reassuring. Right now I feel he's gone through a medical butchery, and the rowdier the men get about this, the better the treatment options for those who face PCa in the future. I'd bet nearly every man here knows what the pink ribbon means, but how many people know the color of the ribbon for prostate cancer awareness? Stay feisty, please. You've already shown your respect and concern by joining this site. IMHO...

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/30/2010 10:07 AM (GMT -6)   
142,

my "wee" one sure didn't get bigger after all my ordeals, lol. I was just thankful it stayed the same, and didn't go from wee to microscopic.

you are right, i should have added that as a bullet on the money side. some do assume that if you can't fly across the country to see a big name specialist, or have some test that your insurance isn't going to pay, you are either doing something wrong or you are plain stupid.

those that are blessed with unlimited rescources, i don't blame them for doing more extensive things, but most of us are lucky if we just have basic affordable health care, with limited choices. those of us that don't have the rescources shouldn't be made to feel bad because we can't afford to go down those paths.

same with some talking about having SRT done way out of their area, and having to rent a place for 2 months to go through treatments to be close by, and all the eating out expenses, travel expenses, etc, get real, i am sure only a handful of people here could do that financially. let alone the burden it might put the rest of their family through.

in a perfect world, everyone would get great medical care without going broke or being rich, but in the real world, you end up working with what you have in front of your nose, and hope that its good enough.

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

proscapt
Veteran Member


Date Joined Aug 2010
Total Posts : 644
   Posted 8/30/2010 10:10 AM (GMT -6)   
A guy I knew, who ran a really great conference, told our group that the idea is "to disagree without being disagreeable."

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 8/30/2010 10:43 AM (GMT -6)   

Excellent responses --

 

This has been a good thread, much needed.

I hope we can continue to offer support and make suggestions with perhaps more sensitivity, but not where we are walking on eggs.

Hopefully folks also got anything bugging them off their chests.

I would say "Can't we all just get along."

But, actually, I think we do!

 

Mel

 


JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 8/30/2010 11:24 AM (GMT -6)   
Gotta add two points to this thread in addition to very good ones already made:
  • anyone who spends time on any publicly available website forum better come with a good filter system....you aren't gonna like everthing you read
  • I would rather sort through differing opinions and personal experiences and then make up my mind rather than have no access to them at all

Joe


Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 8/30/2010 1:26 PM (GMT -6)   
I must have missed something.
I never read anything that remotely implies a lack of respect.
 
Differences of opinion?  Yes.
Questions calculated to cause one to question their intended treatment?  Yes.
Disrespect?  Never
 
Dave
Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.

Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 8/30/2010 6:49 PM (GMT -6)   
Dave,
There have been some problems in the past, but that's behind us. Some folks thought that a certain poster was a pain in the neck. I had a much lower opinion of him. Blunt is OK sometimes, but rudeness should not be tolerated. The mods handled it well...and that's that.
 AGE:58
 Dx: October,27, 2008(the day after my birthday)
 Psa 14.5
 Gleason:(4+3) 7 T2c
 Bone scan:Negative
 Cat scan: Negative
 Biopsy: 4 of 12 positive
 Confined to prostate.
 DaVinci Jan. 19th, 2009. No lymph node involvement, all margins clear.
 8 week PSa <0.01
 Gleason downgraded to (3+4)7
 6 month Psa , 0.1 
 9 month Psa,  0.2  Doubled! Criminy!
 Started RT 10/28...one year since diagnosis.  RT over 12/22.
 3 month post RT Psa 0.1. 6month post RT Psa 0.1

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 8/31/2010 6:00 AM (GMT -6)   
Been following this thread closely...at first, told myself not to post but being the pushy New Yorker that I am, decided to chime in.

Don't know for sure what prompted this thread but I have my suspicions (said with a smile and not in anger). I personally bear no grudge nor have any ill will towards any HW member who posts here. Yes, there have been the occasional rude remarks - made in frustration or fear or even anger. One of the things I have learned over the past couple of years (and it took me more than 50 years to figure this one out), is that we don't know what it's like to walk in someone else's shoes. Since we have no way of knowing what is going on in another person's life, it is impossible - and unfair - to judge their behavior or actions.

We learn from each other here - and that is the primary purpose of this forum. We all have our opinions, some are stronger than others. The important thing is that we share what we know and think in a constructive way that benefits not only those who are already here but those who will stop by in the future.

I love the sharing of information that I find here. Granted, I don't always agree with what is said but know that every piece of information shared here has been gained through experience and is given freely to any who ask for it.

NEIrish
Regular Member


Date Joined Aug 2010
Total Posts : 245
   Posted 8/31/2010 5:55 PM (GMT -6)   
Sephie:  Beautifully said, and I think my reading of what prompted the thread is the same as yours.  This hits men where they live and reactions can be strong.  I appreciate all the replies and hope some of the justifiable frustration felt will be most effective in the most crucial area: getting more definite, targeted treatment plans.  Look what's happened with breast cancer over the years - I think there are many parallels.  As a newbie here, I've not seen the "pushy NY-er" but a thoughtful, concerned, knowledgeable poster.  Everyone here, no matter what the post, has helped me where it counts - making the love of my life feel better.  As I said earlier, stay feisty guys.  It will help those facing this &^%# in the future. 

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/1/2010 5:29 AM (GMT -6)   
Thank you, NE Irish, for a beautifully written reply. I wish nothing but peace to all who come here.
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