Medical Forum / Diseases and Disorders / Prostate Cancer / August 2006
IMRT 8/1
|
|
Thread rating:  |
peter*pan - 13 Jul 2006 20:39 GMT Finally got the confusion settled on the lab that was screwing up either psa tests or reporting of results, or both:
10/19/05 - 0.00 - (Hunter) 06/02/06 - 0.05 - (Quest) 06/09/06 - 0.06 - (Hunter, 1st reported as 0.1) 07/10/06 - 0.06 - (Quest)
Met again with rad-onc yesterday. He advised beginning imrt, but was ok with waiting for another psa in a month or two. I made the decision to go ahead with what I believe is the inevitable. So 6 weeks of imrt starting 8/1.
Any opinions before I start?
Tom
**********
LRP 5/21/03 (age 48) PSA 8.1 Gleason 7 (3+4) Margins all clean 1 nerve spared PSA thru 2005 undetectable
Bob Anthony - 13 Jul 2006 22:26 GMT I'm not an expert with radiation nor do I have (nor want) any experience with it. Those #'s seem a bit low to consider radiation now. Am I wrong? The psa could be benign and seems well below the norm of what is considered a recurrence. You are right to wait as I see it. (If I'm wrong...let me know why).
B.A.
Alan Meyer - 13 Jul 2006 23:45 GMT > Finally got the confusion settled on the lab that was screwing up either > psa tests or reporting of results, or both: [quoted text clipped - 10 lines] > > Any opinions before I start? Your doctor knows far more about this than I do and I'm hesitant to venture any opinions at all about this.
I looked at the prostate cancer treatment summary at the National Cancer Institute website. See: http://www.cancer.gov/cancertopics/pdq/treatment/prostate/healthprofessional/allpages
There is an intriguing paragraph there:
"Biochemical evidence of failure on the basis of elevated or slowly rising PSA alone therefore may not be sufficient to alter treatment. For example, in a retrospective analysis of nearly 2,000 men who had undergone radical prostatectomy with curative intent and who were followed for a mean of 5.3 years, 315 men (15%) demonstrated an abnormal PSA =0.2 ng/mL, felt to be evidence of biochemical recurrence. Of these 315 men, 103 men (34%) developed clinical evidence of recurrence. The median time to development of clinical metastasis after biochemical recurrence was 8 years. After the men developed metastatic disease, the median time to death was an additional 5 years."
This paragraph implies that they regard .2 as the threshold for evidence of failure. They also indicate that even among those men who do go above .2 many do not develop metastatic cancer.
On the other hand, something must account for your detectable PSA. Could it be normal prostate tissue that was not excised during the surgery and is not really cancerous? Could it be cancer, but dormant and not needing treatment? Could it be already metastatic?
The biggest factor militating towards immediate treatment in your case might be your relatively young age. Even if takes 15 or 20 years to kill you, you're young enough that you might live that long and die of PCa. And if you're going to get radiation, the earlier you get it the more likely it is to work.
On the other hand again, there might be new treatments in the next 10 years that will make your recurrence, if it is a recurrence totally manageable and non-threatening.
On the other hand, there might not.
Well, I'm sorry this isn't of any help. It's a tough call. I guess you pays your money and takes your choice, and then don't look back.
Good luck.
Alan
peter*pan - 31 Jul 2006 23:56 GMT Had a practice run today, and real deal starts tomorrow.
Question: What has been the success rate (cure) for any of you with a similar history? Rad Onc guarantees that if pca is still local, IMRT will terminate it.
And 2ndly: Any advice?
Thanks, Tom
Steve Kramer - 01 Aug 2006 01:23 GMT My advice? Just lay back and enjoy the peace. No matter what we say or your doctor says, it will be months, if not years before you can begin to think you had success. No news is good news
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum
> Had a practice run today, and real deal starts tomorrow. > [quoted text clipped - 5 lines] > > Thanks, Tom Leonard Evens - 01 Aug 2006 16:20 GMT > Had a practice run today, and real deal starts tomorrow. > > Question: What has been the success rate (cure) for any of you with a > similar history? Rad Onc guarantees that if pca is still local, IMRT will > terminate it. What was the history?
In any case, what the radiation oncologist says is not literally true. It is possible that even if the cancer is entirely local now, radiation might not cure it. But depending on the details of your diagnois, it may be extremely likely, which is what is important in making a decision.
Unfotunately, it is possible the cancer has already spread. Again, depending on the details of your diagnosis, that may be more or less likely. I presume the radiation oncologist would not recommend radiation if he thought that most likely it had already spread. But you would have to question him about that.
> And 2ndly: Any advice? > > Thanks, Tom Bill - 01 Aug 2006 17:28 GMT "Any opinions before I start?"
Uh, yea, what's the rush? There does not appear to be anything in the history you gave to indicate a risk of recurrence that would justify adjuvant RT, which is really what you would be getting since you don't even have a biological failure. The generally accepted optimal time for SRT is prior to .6 and you are 1/10th of that! .06 PSA can certainly be of of benign origin even it is considered "detectable" using the ultrasensitive test. My opinion FWIW is to watch it for awhile for any definite upward trend or leveling off. You could get somewhere <.2 and live the rest of you life there. But, yes, IMRT would probably cure you - especially if there's nothing there! :-)
Bill Denton RP 2/12/02 PSA .93 Memphis
peter*pan - 02 Aug 2006 00:39 GMT History was posted in 1st msg of topic: LRP 5/21/03 (age 48) PSA 8.1 Gleason 7 (3+4) Margins all clean 1 nerve spared PSA thru 2005 undetectable 06/02/06 - 0.05 - (Quest Lab) 06/09/06 - 0.06 - (Hunter Lab) 07/10/06 - 0.06 - (Quest Lab)
Both uro and radonc (both specialize in pca) believe rise in psa is due to localized recurrence. After nearly 3 years of undetectable, I don't believe the source could be anything but pca.
But I have to admit, as the IMRT gizmo rotated around me this morning, I had this thought: "What the hell was I thinking!!"
Alan Meyer - 02 Aug 2006 00:52 GMT > ... > Both uro and radonc (both specialize in pca) believe rise in psa is due to [quoted text clipped - 3 lines] > But I have to admit, as the IMRT gizmo rotated around me this morning, I > had this thought: "What the hell was I thinking!!" It is possible you made the wrong choice and will suffer whatever side effects you might get from RT, with no benefit.
On the other hand, it's possible that you made the right choice and have just zapped that cancer cell that was about to break loose into the blood stream and establish a metastasis - thus saving your life.
We have often said on this newsgroup that, once the die is cast, there's no point in second guessing the choices and agonizing over whether it was the best choice. Look ahead, not back.
My advice would be:
Hold perfectly still on the table during radiation.
Get a good skin cream and use it on the exposed areas after each radiation session. Ask the doc or the nurse what he recommends. I had a hemorrhoid irritated by RT and found Preparation H very helpful.
While lying on the table, think about those ugly mutant cancer cells and when the buzzer sounds think, "Take THAT you suckers!"
Best of luck.
Alan
I.P. Freely - 02 Aug 2006 01:08 GMT > History was posted in 1st msg of topic: > LRP 5/21/03 (age 48) [quoted text clipped - 13 lines] > But I have to admit, as the IMRT gizmo rotated around me this morning, I > had this thought: "What the hell was I thinking!!" You wouldn't get me near adjuvant tx with a PSA of 0.06, but that attitude could kill me. It's a very personal call.
I.P.
Beverley - 02 Aug 2006 15:49 GMT Radiation doesn't hurt. SE are minimal. What have you got to lose but a few PC cells? Just do it! I do hope it zaps every last one of them and you can put this behind you. Bev
> History was posted in 1st msg of topic: > LRP 5/21/03 (age 48) [quoted text clipped - 13 lines] > But I have to admit, as the IMRT gizmo rotated around me this morning, I > had this thought: "What the hell was I thinking!!" I.P. Freely - 02 Aug 2006 17:21 GMT > Radiation doesn't hurt. SE are minimal. What have you got to lose but a few > PC cells? Just do it! That . . . or do your homework and find that some people experience severe SEs. I resent anyone saying SEs are minimal when a friend of mine has been disabled -- and getting worse -- by RT. He's in chronic rectal area muscle pain, sometimes extreme, and has lost the most important activity in his life. And who knows whether or when the potential long-term SEs such as bowel problems may begin? Base your decisions on FACTS, not internet advice.
I.P.
peter*pan - 03 Aug 2006 22:25 GMT Actually IP, I appreciate Bev's comments - it is as much encouragement as it is advice, that I have chosen a treatment and am going forward with it. You yourself said it is a personal decision - encouragement going forward is welcome.
Perhaps you didn't intend it that way, but your reply seemed quite rude, as well as condescending. And you are mistaken if you think advice given on this discussion forum is not valuable, since it is only "internet advice". The experiences shared here are at least as valuable as what I have gotten from doctors. I asked my Uro when he recommended injections for ED if he had ever tried it, and if not, how could he recommend it or give advice on its use?
You yourself offer quite a bit of advice here, based on research and "facts". How much of that advice is an opinion based on your interpretation of that research? My research on IMRT resulted in the "opinion" that SEs, in my case, would be minimal. Research also indicates I may not return home one of these days when I leave on my Harley. I rode it today to get my 3rd IMRT treatment. Got zapped, then left with a smile. 27 rides to go.
Thanks to all for your thoughts and advice.
Tom
Beverley - 03 Aug 2006 22:46 GMT That Harley is a million times more dangerous than IMRT. If someday your ticket comes up, I hope it is your Harley and not your cancer that takes you.
Get your motor runnin', Head out on the highway, Lookin' for adventure, And whatever comes our way, .......... (Steppenwolf) ;-) Bev
> Actually IP, I appreciate Bev's comments - it is as much encouragement as > it is advice, that I have chosen a treatment and am going forward with it. [quoted text clipped - 20 lines] > > Tom peter*pan - 04 Aug 2006 00:25 GMT Steppenwolf! My 1st concert!
Steve Kramer - 05 Aug 2006 18:03 GMT 1 in 5 die of heart attacks 1 in 7 of cancer Then there is auto accidents Then strokes Then falls
I think motorcycle accidents is next. Let him have his fun.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum
> That Harley is a million times more dangerous than IMRT. If someday your > ticket comes up, I hope it is your Harley and not your cancer that takes [quoted text clipped - 34 lines] >> >> Tom Steve Jordan - 04 Aug 2006 00:45 GMT On August 2, peter*pan replied to IP, in pertinent part:
> Perhaps you didn't intend it that way, but your reply seemed quite rude, > as well as condescending. IP, who seems quite certain that he is right, often exaggerates SEs. And minimizes his own.
Case in point is his citation of his friend's problems. Those problems may or may not have been caused by the radiation tx, and that tx may or may not have met the professional standards applicable to such tx. IOW, we have, based upon IP's word, no way to know the true reason for his friend's misery. It's just one more anecdote (second-hand at that) and entitled to consideration only as such.
> And you are mistaken if you think advice given > on this discussion forum is not valuable, since it is only "internet > advice". The experiences shared here are at least as valuable as what I > have gotten from doctors. Here I agree with IP. Anyone who is not a qualified PCa medic and who gives strangers advice on the 'net is quite simply dangerous to desperate and frightened newbies who might not be able to judge the value of such advice.
And if (s)he were a qualified PCa medic and gave such medical advice to people whom (s)he had not examined should (1) have their license to practice medicine revoked, and (2) be horsewhipped.
I am acquainted with a person who owns and operates his own PCa-related website. He frequently gives medical advice to newbies. He is a dangerous man, and God alone knows how many men he has damaged with his pseudo-medical advice. And IMO it's all because of his monumental ego.
> I asked my Uro when he recommended injections for ED if he had ever tried it, and if not, how could he recommend it or give advice on its use? > Oh, c'mon. My med onc is a woman. I have not subjected her to a physical examination, but I'm pretty sure that she does not have, nor has she ever had, a prostate. Gives purty good advice, though, and I've recommended her to others who are delighted with her. In fact, IMNSHO, she is brilliant.
(ka-snip)
Regards,
Steve J
I.P. Freely - 04 Aug 2006 03:39 GMT > IP, who seems quite certain that he is right, often exaggerates SEs. I quote Strum, Walsh, Mayo, J-H, S-K, ACS, PCRI, Scardino, etc. If they're right, so am I. If they're wrong, so am I.
> And minimizes his own. I don't think anyone here would agree that I've downplayed my diapers or impotence. If I have any other SEs, I'm not aware of them.
> Case in point is his citation of his friend's problems. Those problems > may or may not have been caused by the radiation tx, and that tx may or > may not have met the professional standards applicable to such tx. IOW, > we have, based upon IP's word, no way to know the true reason for his > friend's misery. It's just one more anecdote (second-hand at that) and > entitled to consideration only as such. Absolutely. But his rectal area muscle pain began during RT, became intolerable in the following days and weeks, now disables him, and is getting worse rather than better despite close care. I have no idea how good his tx was, and his case implies nothing about another pt's likelihood of RT-induced PITA. But if his doctors are right that RT caused his pain, his experience supports my statements, as intended.
I.P. Freely and may be permanently unable to get an erection of any use to my wife. Capische?
I.P. Freely - 04 Aug 2006 01:01 GMT > Actually IP, I appreciate Bev's comments - it is as much encouragement as > it is advice Encouragement is great; saying "Radiation doesn't hurt. SE are minimal. What have you got to lose but a few PC cells? Just do it!" is inexcusably misleading medical advice. It is vital for readers to distinguish between ADVICE and COMFORT FOOD.
> Perhaps you didn't intend it that way, but your reply seemed quite rude, > as well as condescending. My intent was neither rude nor condescending; my intent was to alert you that her "facts" were not facts at all; they were encouragement disguised as facts. OTOH, Beverley's been here long enough to know those statements are untrue, and I've lost the patience to treat bad medical advice with kid gloves.
Re: "Radiation doesn't hurt." The actual RT tx may not hurt, but pain, even extreme pain, can definitely follow.
Re: "SE are minimal." Bull! SEs CAN BE --- not "ARE" -- minimal. They CAN also be devastating.
Re: "What have you got to lose but a few PC cells?" Oh, nothing . . . except measurable odds of a lifelong litany of SEs, some of which can be quite severe, some of which occur in up to half of pts, one of which can be fatal.
Re: "Just do it!: The only interpretation I can think of is, "Damn the torpedoes; full speed ahead", aka "Just irradiate your crotch 35 times just in case and the hell with the likelihoods of good or bad results."
> And you are mistaken if you think advice given > on this discussion forum is not valuable, since it is only "internet > advice". Anecdotal experience is of virtually no use in that it tells us zero about what our outcomes are likely to be. At best it provides cases we MIGHT experience, with no odds implied. Just about the only truly useful and practical ADVICE presented in this forum is to read, read, read; everything else is facts, opinions, experiences, and comfort food, not ADVICE. I'm not disparaging the expertise here, but you'll notice that the true experts here seldom dispense ADVICE. How often do Ed or Ron or RalphV or Steve Jordan or their peers recommend treatments along with their erudite recitation of medical facts, and when has any of them said, "Just Do It" unless it's crystal clear there is only one option?
> The experiences shared here are at least as valuable as what I > have gotten from doctors. Then you have some truly useless doctors. Your doctors SHOULD be providing or pointing you towards the results of large bodies of research, which mean FAR more than what Uncle Joe done or Grandad's results.
> You yourself offer quite a bit of advice here, based on research and > "facts". I hope you're wrong. I try hard to offer no advice beyond "Read, Read, Read". If you can show me any medical or tx advice I've offered I'll apologize and increase my efforts to avoid offering it.
> How much of that advice is an opinion based on your > interpretation of that research? My research on IMRT resulted in the > "opinion" that SEs, in my case, would be minimal. If the RT professionals knew which pts would experience or escape SEs, the incidence of SEs would probably drop dramatically, as many doctors would recommend something -- ANYTHING -- else in pts likely to experience nasty SEs. What tells you you will escape the list of significant SEs?
I'm not trying to discourage you from RT. I have zero medical foundation and zero knowledge of your case on which to base an opinion either way. My bottom line was stated in my first paragraph above.
I.P.
Beverley - 04 Aug 2006 01:27 GMT IP, I'm not going to get into an argument with you but Tom has been a member of this group for a long time. But the truth is that Harley is by far much more dangerous than IMRT. In fact, the odds are the only SE he'll ever have from IMRT might be the desire for an afternoon nap. And that is a fact! Bev
ron - 04 Aug 2006 02:38 GMT Beverley wrote...snip...
> In fact, the odds are the only SE he'll ever have > from IMRT might be the desire for an afternoon nap. And that is a fact! Bev...Your view differs substantially from mine. Here's the info and reference I base my view upon. The authors are surgeons, rad oncs and health science professors. All treatments often have significant SEs...ron
From: J Clin Oncol. 2005 Apr 20;23(12):2772-80; Long-Term Outcomes Among Localized Prostate Cancer Survivors: Health-Related Quality-of-Life Changes After Radical Prostatectomy, External Radiation, and Brachytherapy.; Miller DC, Sanda MG, Dunn RL, Montie JE, Pimentel H, Sandler HM, McLaughlin WP, Wei JT.
Note: These scores measure respondent satisfaction / dissatisfaction from a (EPIC-26) QOL survey. Higher numbers indicate increased satisfaction. The numbers are not percentages satisfied or dissatisfied.
Table 2. Age-Adjusted EPIC HRQOL Domain Summary Scores at a median Follow-Up of 6.2 Years Among Men Treated for Localized prostate Cancer and Controls
Controls RP 3D-CRT BT Urinary irrit. 88.6 91.5 84.1 80.8* Incontinence 92.2 80.0* 85.5 78.0* Bowel problems 96.0 94.0 83.6* 86.5* Sexual 63.3 38.5* 35.1* 27.9* Vitality 92.8 91.0 88.9 87.4 * Significant difference in summary domain score at 6 years of median follow-up av controls (p<0.05) ** No significant HRQOL differences were detected among BT patients who received supplemental external radiation compared with those treated with BT monotherapy
I.P. Freely - 04 Aug 2006 03:52 GMT > IP, I'm not going to get into an argument with you but Tom has been a member > of this group for a long time. But the truth is that Harley is by far much > more dangerous than IMRT. In fact, the odds are the only SE he'll ever have > from IMRT might be the desire for an afternoon nap. And that is a fact! Even if that is a fact -- you can't back it up -- all it says is that Tom's SE odds are less than 50%. I don't find that especially encouraging.
I.P.
peter*pan - 04 Aug 2006 01:46 GMT Wow – what is with the harsh attitude? My 1st reaction was to let it go, but …
Bev’s advice was “COMFORT FOOD” and nothing more. I have already started the treatment. I would have thought that was obvious to all.
Your reply to Bev was rude. But perhaps because you misinterpreted it as advice you can be excused. Your reply to me was condescending. I don’t need you to separate out encouragement from advice – I think that is true of most readers here.
You are right: “Anecdotal experience is of virtually no use in that it tells us zero about what our outcomes are likely to be”. Applies to your example as well. But as I said, the experiences shared here can be valuable in helping make a decision.
My Doctors have been outstanding. Hard to believe you would state your opinion based on my comment that they have not stuck a needle in their dick or because the experiences of folks here is as valuable to me as the experiences of their patients that they have shared with me. I was referring to “experiences” –did you not get that?
My RadOnc has quite a bit of data on imrt and the physical conditions/ailments that statistically seem to indicate higher susceptibility to serious SEs from treatment. But that’s a roll of the dice. As I said, it’s like riding my bike. The next turn might be my last, but I’m already leaning into it.
Ride on.
I.P. Freely - 04 Aug 2006 04:33 GMT > Wow – what is with the harsh attitude? You asked for our opinions on your RT choice. Beverley responded with very inaccurate medical statements and medical advice which could not rationally be interpreted as mere "encouragement". I corrected them in general terms and offered anecdotal proof that RT CAN have SEs, and Ron corrected them with detailed facts from a referenced study. Beverley came back with yet more medical claims she can't back up. And I said ZERO about needles or dicks.
Now that it's clear you're worried more about my presumed attitude than about the cancer tx you requested our opinions on, I'll make a note not to bother you with future responses to your requests for assistance (that's not an "attitude"; it's a fact, one you'll probably appreciate.) But I reserve the right -- and accept, for now, the obligation we all have -- to speak up when we feel bad medical or tx advice is being presented. You're welcome to regard Beverley's explicit medical statements as mere encouragement, but lurkers need to understand that you CHOOSE that interpretation and to be careful they don't base THEIR decisions on them.
I.P. but I don't tiptoe
My 1st reaction was to let it go,
> but … > [quoted text clipped - 25 lines] > > Ride on. peter*pan - 04 Aug 2006 05:48 GMT Sorry to disappoint you IP, I don't spend much time worrying about your attitude - had you pegged as an a.s from your 1st post. And I never asked for your opinion - there was just no way to exclude you.
Pops - 04 Aug 2006 14:04 GMT > Sorry to disappoint you IP, I don't spend much time worrying about your > attitude - had you pegged as an a.s from your 1st post. And I never asked > for your opinion - there was just no way to exclude you. I have several friends who have undergone IMRT with tragic results from major bladder damage to requiring bowel surgery. Minor SE's like blockage are quite common. Almost everyone I know who has undergone radiation tretament has had to deal with that eventually. And, as you must know, radiation in itself, can cause cancer as it diddles with cell health and reproduction.
Many, if not most, of us will have to face the likelihood of radiation treatment. Hopefully we will consider it with an approached honed by our RP experiences. Most of us are arm chair quarterbacks having learned details and lessons after the fact that we wish we had known beforehand. Will that change our decisions? Perhaps not, but we'll go forward with our eyes wide open. We'll go into it understanding the risks, and they are not minor or negligible.
BEV indicates you are a long time member of this forum. You must have seen, and even been part of, the constant banter about post-op PSA readings. We've debated when to move to EBRT. I've been around for a while also and I don't remember anyone recommending EBRT for PSA levels below 0.1. My onc says 0.2. Doubling rates when PSA is so low have a really big standard deviation.
So excuse me if I'm a bit confused about your decision and/or your oncs recommendation. Unfortunately the onc thing has a possible, while undesireable, explanation. It's called bucks! Whe I opted to back away from EBRT, it was I alone that made the decision. My onc would not give a recommendation and would have gone ahead if I had so opted.
All of this is academic now. You've made your decision and you're on your way. We'll all support you. I'm sure IP's comments are not meant to belittle you, and I'm sure he wishes you all the success possible (and absolutely no SE's).
ron - 04 Aug 2006 14:15 GMT >From experience, I believe that everyone here tries to be helpful. There are ups and downs, good days and bad days and trials and tribulations that may color what we write on some days. Sometimes what we try to write is read differently at the other end, but the intent to help and support is there. Good luck with your treatment...Best wishes and good health, ron
I.P. Freely - 04 Aug 2006 16:39 GMT > Sorry to disappoint you IP, I don't spend much time worrying about your > attitude - had you pegged as an a.s from your 1st post. And I never asked > for your opinion - there was just no way to exclude you. Sure there is. I just accomplished it. Next time you request opinions, I won't see your request. Everybody wins.
I.P.
Bill - 04 Aug 2006 19:44 GMT FWIW more than one uro, rad-onc, and med-onc told me that SRT was highly probable if not likely to knock out what erectile function I regained after RP. I.e. if the first shot doesn't get you, the second will. For a 55 year old single guy, that has weighed into my evaluation of SRT.
Bill Denton RP 2/12/02 PSA ? Memphis
Steve Kramer - 05 Aug 2006 18:20 GMT > Sorry to disappoint you IP, I don't spend much time worrying about your > attitude - had you pegged as an a.s from your 1st post. And I never asked > for your opinion - there was just no way to exclude you. At times, I enjoy IP (though I did kill file him for awhile when he first posted), but THAT was one of the greatest shots fired across anyone's bow I've ever seen in a newsgroup.
I.P. Freely - 05 Aug 2006 20:55 GMT > "peter*pan" wrote... >> Sorry to disappoint you IP, I don't spend much time worrying about your [quoted text clipped - 4 lines] > posted), but THAT was one of the greatest shots fired across anyone's bow > I've ever seen in a newsgroup. If PP doesn't worry about my attitude, why did he bring it up at least seven times in this thread alone?
If he wanted to exclude me from his repeated requests for opinions, why didn't he try the two most obvious means, rather than waiting for ME to solve HIS problem?
Anyone who emotionally can't handle facts and/or equates them with rudeness or condescension any or any other "'Tude" is ADVISED to killfile me, 'cause I don't come with or want a syrup dispenser. Syrup conceals problems and impairs their resolution -- great in La La Land but dangerous in the real world.
I thought this forum's goals were facts and comfort food, not ad hominem bow shots. I'll stick to the former, no matter how much fun (and profitable, as with the internet thief I embarrassed into paying up) the latter can be in the short term.
I.P.
snkrvr - 06 Aug 2006 20:47 GMT Actually I.P., it looks like you are the one with the emotional issues, and the one with the need to continually respond with increasingly hostile comments. You are a pompous braggart and lose credibility with responses that distort what has been written to serve your own needs: e.g. there are only 3 references from HIM to YOU in this thread, not 7.
Why assume (you know what that makes you, right?) that everyone uses a mail client to read newsgroups. Many folks access directly thru browsers – no “killfile” option there. And why filter YOUR email if it isn’t YOUR problem anyways? Seems like a childish response. Then continue to bash HIM while redirecting HIS email to a dead email folder? There’s that credibility thing again…
cock-a-doodle-doo
I.P. Freely - 07 Aug 2006 00:22 GMT > I.P., it looks like you are the one with the emotional issues, and > the one with the need to continually respond with increasingly hostile > comments. Please show me one hostile comment I've ever made to anyone.
> You are a pompous braggart And while you're looking for hostile, find one boast/brag.
> and lose credibility with responses > that distort what has been written And find one distortion.
When you can back up your accusations, I may take them seriously.
> there are only 3 references from HIM to [your attitude] in this thread, not 7. Cut & pasted: 1. your reply seemed quite rude, 2. as well as condescending 3. what is with the harsh attitude? 4. Your reply to Bev was rude. 5. Your reply to me was condescending. 6. I don't spend much time worrying about your attitude 7. had you pegged as an a.s from your 1st post.
> Why assume . . . that everyone uses a > mail client to read newsgroups. Many folks access directly thru browsers > – no “killfile” option there. No assumption here. All four of the browsers I use, including Mac's Safari and Microsoft IE, have filters. Besides, p*p ignored an even simpler and more direct means of excluding my response: "I.P. response excluded". That should work fine as long as I don't see bad medical advice go unchallenged.
> And why filter YOUR email if it isn’t YOUR problem anyways? > Seems like a childish response. Not at all. It's a very deliberate, considered approach I've debated online and in my own head over the years and reserve for special cases when I tire of using my own eyes and brain to reduce the noise in my life. Why would I want to see posts from someone who wrote me off as an a.s based on my first post, as follows, in response to Olfart, whose doctor denied a diabetes-ADT connection:
"Shouldn't be too difficult, given this quote "Virtually all studies show that low testosterone causes insulin resistance" from http://www.avantlabs.com/page.php?pageID=177&issueID=16 . which, in turn, came 0.19 seconds after I punched low < testosterone insulin > (without the <>) into Google. After all, the whole purpose of ADT/Lupron is to zero out our testosterone, which causes insulin resistance, which becomes, or is diabetes. I'm sure if you follow that lead you'll find the proof your doc needs . . . or that YOU need to change docs if he refuses the evidence."
If presenting medical facts brand one as an a.s, there are a ton of a.ses here.
> Then continue to bash > HIM while redirecting HIS email to a dead email folder? Where have I ever bashed p*p, before or after this hypothetical PLONK? I haven't filtered him yet; I always give a PLONKEE a chance to respond to my last post to him before pushing the SHIELDS UP button; it's the polite thing to do. Why do you falsely criticize me for bashing him yet remain silent when he calls me an a.s?
I recommend lurkers jump in the pool and swim for a while before peeing in it. It might give them a whole new perspective.
I.P.
snkrvr - 07 Aug 2006 01:31 GMT You are entertaining, but for someone so obsessed with facts, you are in total denial about yourself.
I.P. Freely - 07 Aug 2006 03:30 GMT > You are entertaining, but for someone so obsessed with facts, you are in > total denial about yourself. It would really help overcome my self-denial if you would provide specific examples of my distortions, boasts, and bashes. On what else could I base any self-evaluation or changes?
I.P.
You smiled, you spoke, and I believed - 07 Aug 2006 19:22 GMT >> I.P., it looks like you are the one with the emotional issues, and >> the one with the need to continually respond with increasingly hostile [quoted text clipped - 73 lines] > > I.P. I.P.
FYI I have always regarded you as a knowlegeable source in this group. I have never observed you to be hostile, etc, as the above poster claims.
In this case you have my vote.
j.
I.P. Freely - 08 Aug 2006 19:02 GMT > I have always regarded you as a knowlegeable source in this group. I > have never observed you to be hostile, etc, as the above poster claims. > > In this case you have my vote. I like your opinion more than his, so I'll go with yours.
Now . . . who needs a new one ripped? ;-)
Back to reality, I did examine my posts (in my head, not in Google) for the braggart business. I can see where some comments may seem boastful out of context, but they were presented as direct responses to questions or as support for those responses. I HOPE that's been the extent of it.
I.P.
Steve Kramer - 09 Aug 2006 00:08 GMT > Back to reality, I did examine my posts (in my head, not in Google) for > the braggart business. I can see where some comments may seem boastful out > of context, but they were presented as direct responses to questions or as > support for those responses. I HOPE that's been the extent of it. I cannot recall a boastful comment about yourself. You've done your best to exclude yourself from braver (you sentiment) military men. I don't believe you have ever recounted a solitary personal accomplishment.
You've rarely boasted of your wife, but not yourself -- as I can recall.
I.P. Freely - 09 Aug 2006 08:10 GMT > You've rarely boasted of your wife And anybody who doesn't want me to boast about my wife can kiss my grits. I show her anything I write about her as another form of direct praise.
Speaking of which . . . DAMN, but I miss genuine grits since leaving the deep south. A friend of mine used to have them shipped to him out west.
I.P.
Steve Kramer - 09 Aug 2006 11:22 GMT >> You've rarely boasted of your wife > > And anybody who doesn't want me to boast about my wife can kiss my grits. > I show her anything I write about her as another form of direct praise. I hope there was nothing I said that would indicate that I would be one of those. I don't think anyone here is offended by bragging about one's wife.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum
I.P. Freely - 10 Aug 2006 21:46 GMT >>> You've rarely boasted of your wife >> And anybody who doesn't want me to boast about my wife can kiss my grits. >> I show her anything I write about her as another form of direct praise. > > I hope there was nothing I said that would indicate that I would be one of > those. I don't think anyone here is offended by bragging about one's wife. Not to worry. I was just covering all bases in case that offfffFENDed peter*pan.
I.P.
peter*pan - 10 Aug 2006 23:00 GMT If nothing else, you have proven yourself to be quite petty.
Leonard Evens - 04 Aug 2006 20:48 GMT >> Radiation doesn't hurt. SE are minimal. What have you got to lose but >> a few [quoted text clipped - 9 lines] > > I.P. I.P.
Did your friend have RT as primary treatment? The radiation doses are much higher in that case. For follow-up RT after surgery, they use lower doses, which presumably means less risk of side effects. But of course, they can still occur.
I.P. Freely - 04 Aug 2006 21:14 GMT > Did your friend have RT as primary treatment? The radiation doses are > much higher in that case. I've read just the opposite in the literature and mentioned it here without disagreement, that SRT uses higher doses.
And the beat goes on.
I.P.
Leonard Evens - 05 Aug 2006 20:43 GMT >> Did your friend have RT as primary treatment? The radiation doses >> are much higher in that case. > > I've read just the opposite in the literature and mentioned it here > without disagreement, that SRT uses higher doses. I'm not sure if we are using the terms the same way. These days when radiation is used first as a treatment method, the aim is to apply as high a dose as possible to the prostate and the tissues immediately adjacent to it without damaging the rectum or other critical structures. The dose it typically 75 Gy or higher. According to Scardino, they have gone as high as 80-90 Gy with IMRT at Sloan Kettering. Scardino also says that a salvage radiation dose is typically in the range 64-68 Gy but they may go as high as 70-75 Gy if they can locate a specific spot where cancer is present.
> And the beat goes on. > > I.P. Peter Headland - 04 Aug 2006 19:46 GMT > Radiation doesn't hurt. SE are minimal. Beverley, Those comments are innacurate and irresponsible - I am surprised at you.
 Signature Peter Headland
Beverley - 05 Aug 2006 01:10 GMT Actually they are not inaccurate or irresponsible. Here's why.
My husband had two different teams for treatment. One team of rad-oncs was local. They did the EBRT and had a rate of SE (other than fatigue) that was less than 4% of their patients during EBRT treatment with no long term (after treatment) significant SE's. These guys have been at it for quite some time.
The other rad-onc team was in our state's capitol city a few hours away at a major teaching hospital. Our rad-onc there was our primary rad-onc who worked with our local rad-onc. It was with the primary rad-onc that my husband had his brachytherapy. This rad-onc specialized in brachy. He could count the number of patients on his two hands with ED and has had no serious SE's ever. A few minor problems but all correctable.
Okay, that is two teams in two different cities with no significant/serious SEs, so where am I being misleading? In all honesty I wonder who these other folks go to who have all these horrible problems? No doctor is perfect, no one is ever going to go through a treatment the same way, but why are these other guys getting fried? And why are two unrelated teams having no problems?
I'm going to believe our two rad-onc teams when they say they have no long term significant SEs. We went into these treatments well aware of the possible things that could happen. We asked plenty of educated questions because we had done our homework. We didn't just want overall statistics we wanted theirs!
BTW, since 1989 our rad-onc has never yet had a failure after brachytherapy. He admits that is almost scary but he says he is not alone with those statistics, there are plenty more rad-onc's out there just like him. Bev
> > Radiation doesn't hurt. SE are minimal. > > Beverley, Those comments are innacurate and irresponsible - I am > surprised at you. Bill - 05 Aug 2006 15:27 GMT Beverly, I obviously don't know what the EBRT team's results are, nor am I going to pry into your husband's life, but I think it highly unlikely that only 4% of their primary-Tx Pts have significant ED. The one thing I have learned about doctors' claims in the ED area is that they have different definitions of "significant" than do we. :-/
Bill Denton RP 2/12/02 PSA ? Memphis
Beverley - 06 Aug 2006 13:49 GMT Personally, I think our brachy doc considers ED to be erectile dead. His resident told us that if a man can use Viagra and make it work then they don't consider the ED to be a "problem". Bev
> Beverly, I obviously don't know what the EBRT team's results are, nor > am I going to pry into your husband's life, but I think it highly [quoted text clipped - 6 lines] > PSA ? > Memphis Bill - 07 Aug 2006 15:33 GMT "His resident told us that if a man can use Viagra and make it work then they don't consider the ED to be a 'problem'."
My point exactly. I doubt there is a man in this ng who agrees w/ that B.S. If you can't get a serviceable erection, not to mention a pre-op one, w/o Viagra, you have an ED "problem." Manageable perhaps, but a problem nonetheless. I think it is downright fraudulent for doctors to tout bogus stats like that.
Bill Denton RP 2/12/02 PSA ? Memphis
I.P. Freely - 08 Aug 2006 18:56 GMT > "His resident told us that if a man can use Viagra and make it work > then they [quoted text clipped - 5 lines] > problem nonetheless. I think it is downright fraudulent for doctors to > tout bogus stats like that. Particularly given that the leading cause of ED in middle age is cardiovascular disease. i.e. ED is a useful marker for CVD. One of the reasons I fired my local VA doc was that he denied any connection between ED and CVD.
I.P.
Peter Headland - 07 Aug 2006 16:48 GMT > Actually they are not inaccurate or irresponsible. Here's why. Stating the *claimed* results of the two teams you have dealt with as if every man who opts for RT no matter what type and where is inaccurate and irresponsible, because it suggests to the reader that they can expect the same results, which we know is not so. It's like saying "smoking doesn't cause lung cancer - my grandpa smoked 60 a day and died in an auto wreck at the age of 95".
I have no issue with you stating that some RT teams claim such results, just please don't make blanket statements like the one to which I objected.
 Signature Peter Headland
Beverley - 08 Aug 2006 02:58 GMT I'm sticking with radiation doesn't hurt and the SE are minimal. There is no pain involved with being radiated. And whatever side effects do crop up they are for the most part minimal and go away once the RT is stopped. The concept of people getting other parts of their insides fried is what scares me. Thirty years ago, yes it apparently happened, but today with the new equipment that should NEVER ever happen! If it does - find a lawyer!
When my FIL was undergoing EBRT many years ago (maybe 15-18 years ago) he was transported to another hospital where the RT was performed. So they would load up a bus full of men with PC and take them on an hour and a half ride. They were told to wear diapers because they wouldn't be able to make the trip home without them. Every day he traveled with this group. The men often complained of severe skin burns and other problems (urinary/bowel).
This does not happen today. The guys are not being burned (externally) or their insides fried. Some people might have some skin irritation. So a bottle of water-based moisturizer is given at the start. They are warned that hemorrhoids are often irritated and told to use a hemorrhoid cream if that happens; and if the hemorrhoid cream is not working they are to immediately tell the doctor. They are told they might feel the need to void immediately after radiation so visit the bathroom before jumping in the car. Gee, do they really look like major side effects to you?
Losing ejaculate is a no brainer. It's not a side effect it is the direct result of frying the prostate. And many men chose RT as Tx for PC because they do not want to lose sexual function.
As for the brachy that is a more intense dose of radiation delivered to the prostate. The prostate swells before it shrinks, etc. There is much more to go wrong there but still the SE of brachy are at a much lower ratio than the same SE's from RP. But tossing brachy in here is comparing oranges to tangelos, and then both to apples.
I am not being irresponsible! Bev
> > Actually they are not inaccurate or irresponsible. Here's why. > [quoted text clipped - 8 lines] > just please don't make blanket statements like the one to which I > objected. I.P. Freely - 08 Aug 2006 19:14 GMT > I'm sticking with radiation doesn't hurt and the SE are minimal. There is no > pain involved with being radiated. And whatever side effects do crop up they > are for the most part minimal and go away once the RT is stopped. The > concept of people getting other parts of their insides fried is what scares > me. Thirty years ago, yes it apparently happened, but today with the new > equipment that should NEVER ever happen! If it does - find a lawyer! snip
> I am not being irresponsible! You're telling prospective RT pts that the literature no longer applies because today's RT has solved the short and long term problems of yesterday.
Unless you can produce peer-reviewed literature that resoundingly disproves the existing peer-reviewed literature, that's beyond irresponsible and drags this forum down towards to the level of the magic bullet spammers.
RT prospects, hike up your hip boots when on the internet. There's a ton of bad info on it.
I.P.
Bob Caron - 08 Aug 2006 22:44 GMT Two years out from EXBRT. SE are; impotent, severe frequent urination, ( min. every two hours, 24/7) diarrhea, and to top that off, Recurring PC. now on HT. If this is what some people call minimal? Bob
>> I'm sticking with radiation doesn't hurt and the SE are minimal. >> There is no [quoted text clipped - 23 lines] > > I.P. Beverley - 09 Aug 2006 03:44 GMT http://www.cancer.prostate-help.org/download/pilgrim/10rad.pdf
Go to page 12 and read IMRT. They list 2% for rectal bleeding. You can also check a few hundred other places on the net starting with the ACS. All of which are considered to be excellent sources. Or make it easy on yourself and go to:
http://www.cooleyville.com/
He's got lots of sources.
Sorry to tell you guys this but RT beats RP for fewer side effects. That's why the RT/brachy guys don't hang out here. They have their treatment and they go back to living their lives without any problems. Like all men treated for PC they will lose their ejaculate but most don't even lose their erections and what they do lose is easily fixed with a pill.
I'm done with this thread. Bev
> I'm sticking with radiation doesn't hurt and the SE are minimal. There is no > pain involved with being radiated. And whatever side effects do crop up they [quoted text clipped - 46 lines] > > just please don't make blanket statements like the one to which I > > objected. Peter Headland - 09 Aug 2006 17:33 GMT > RT beats RP for fewer side effects. That's > why the RT/brachy guys don't hang out here. Great non-sequitur!
Apart from the fact it isn't true (we have plenty of RT regulars), this is not primarily a forum for the discussion of side effects; most of us are discussing treatment options and trying to provide information to help others make difficult decisions. Ra-ra evangelising any particular treatment option is not helpful.
Unfortunately, some folks seem to need to validate their very personal decisions by making excessively positive and unqualified claims about their treatment choices.
 Signature Peter Headland
I.P. Freely - 10 Aug 2006 22:02 GMT > Sorry to tell you guys this but RT beats RP for fewer side effects. OTOH, RP doesn't cause colon cancer or years of bowel incontinence and pain, as your across-the-board dismissal of RT as benign states.
> That's > why the RT/brachy guys don't hang out here. They have their treatment and > they go back to living their lives without any problems. It is utter, irresponsible, embarrassing (to this forum), and insulting (to the thousands of men in pain) bullshit to make that statement without a qualifier such as "usually" or "in x% of cases" or something, you know, actually TRUE.
> Like all men > treated for PC they will lose their ejaculate but most don't even lose their > erections and what they do lose is easily fixed with a pill. Harvard, J-H, S-K, statistics based on scores of thousands of men, and our community two-year college say you're dead wrong.
> I'm done with this thread. Good. Then we can get back to reality and credibility.
I.P.
Pops - 03 Aug 2006 16:11 GMT > Finally got the confusion settled on the lab that was screwing up either > psa tests or reporting of results, or both: [quoted text clipped - 21 lines] > 1 nerve spared > PSA thru 2005 undetectable I suppose I'm too late.
I'm not sure I'm in agreement what you are doing considering the numbers you posted here both pre and post op. I'm not sure why your Rad Onc suggested this and would have opted for a second and even third opinion.
The body produces PSA elsewhere in small amounts.
The PSA tests, even the high resolution ones, have a tolerance. PSA is NEVER "undetectable" using high res measurements so I assume those initial readings were at normal res. They could have all been 0.05/0.06
Your newer numbers show no statistically significant change.
If that small amount of PSA is being produced by prostate cells, it doesn't mean they're cancerous, particularly at those levels.
If the PSA is being produced by PCA cells there is no assurance, statistically or otherwise, that they are local to the prostate bed. Again this is emphasized by your low numbers.
If there are PCa cells and they remain in your prostate bed, there are very few and there is no guarantee that EBRT will find and kill them.
The side effects of RP aren't trivial. The SE's of IMRT aren't either. Serious complications are very possible..
You have exhausted your last really curative option. You can't do Rad again. Did your consider HT? You can start and stop that as often as you'd like.
Here are my numbers: Pre-op PSA 15, Gleason 4+3 age 59 Post op: neg margins, neg lymph, neg seminal vesicles. 2 tumors 1 dime sized, one pencil lead size, both well within the gland. (I got pictures!!) Gleason 3+4. No incontinence, no erectile function as of 20 months - haven't tried "helpers".
3 month PSA = 0.24, 4 month 0.12, prepped for EBRT, 6 month <0.1, cancelled EBRT & went to high resolution PSA testing, 9 month < 0.05, 12 month <0.05, 18 month <0.05 (I asked why they can't be more precise and was told that they could be but the absolute numbers below 0.05 aren't important, My Rad Onc said that action shouldn't be considered below 0.1 and that if doubling rate at low levels became an issue we'd "talk again").
I know you have opted for the "kill it all now and quickly option". I know others support that philosophy. I know you are very young, and I know you are very worried. All of us here are rooting for you. I sincerely hope you can return here, happy and healthy, in 20 years, when you're somewhere near my age and post "That Pops was a real jerk"!
Me, I'm not promising that I will respond.
My Best...
peter*pan - 04 Aug 2006 15:59 GMT I sincerely appreciate all your comments - both advice and opinions - and especially all the best wishes, which is truly the greatest benefit of this forum.
I have 2 young children, which plays a heavy hand in my treatment decisions. And I am not very good at waiting, so an aggressive response to pca was a given.
Thanks, Tom
|
|
|