Medical Forum / Diseases and Disorders / Prostate Cancer / May 2005
when to stop reading?
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roger - 28 May 2005 14:12 GMT Ever since I got diagnosed with PC I've been reading all I can grasp about the disease, as I think most men would do.
(Going to see my doc in two weeks now, in order to settle for a programma.)
Now I've been lurking around for almost three months, reading hundreds of webpages with a thousand of subpages, reading books, participating in this NG and so on. All in purpose to choose the best treatment for me, to be prepared for the SE:s of each possible treatment, to know the statistic outcome and so on, and...
soon my head have burned all of its fuses, and will suffer a major short circuit or explode!
Knowledge is power, yes, but I think all this seeking of knowledge is going to drive me crazy soon, and my brain is going to develop a tumor a thousand times bigger than the one in my prostate because of all this acquisition of information!
There's no way in hell I can remember all I read, all the statistics, all the opinions and recommendations. And there is always new information coming up that may alter your "picture" of it all.
There must be a time where enough is enough or...? Even for us with PC there must be other things in life than PC or...?
How do you all deal with this?
/Roger
Beverley - 28 May 2005 14:25 GMT I know the feeling when you've read just about everything you can get your hands on and explored every option. I think once you've made a decision, chosen the doctor and have the treatment then some of it will subside. I still read but not with the same thirst. I don't think you ever completely put it behind you as those pesky PSA tests remind everyone that they have battled PC.
Take your wife or SO and get out of the house and do something. Pretend you are 19 again. Put this whole thing away for the weekend or a few days. Make some memories to tide you over through the rough times ahead. Bev
> Ever since I got diagnosed with PC I've been reading all I can grasp > about the disease, as I think most men would do. [quoted text clipped - 31 lines] > ** SPEED ** RETENTION ** COMPLETION ** ANONYMITY ** > ---------------------------------------------------------- JK@work - 28 May 2005 17:10 GMT > Ever since I got diagnosed with PC I've been reading all I can grasp > about the disease, as I think most men would do. [quoted text clipped - 26 lines] > > /Roger For me the time came when I met the right doctor. I put myself in his hands, and trusted him all the way! Good luck to you.
 Signature JK Sinrod Sinrod Stained Glass Studios http://www.sinrodstudios.com/ Coney Island Memories www.sinrodstudios.com/coneymemories/
John Loomis - 28 May 2005 17:48 GMT Hello JK I think you are right. You need to find a Dr. you can trust. If you do not like your Dr. or options find another Dr. See what they say. I saw 4 Dr.s A Urologist who knew his science but was not very mannerable. The Oncologist was fine, but I had 2nd thoughts after seeing him. I went to see another Prostate cancer specialist.....Almost went for his practice but got cold feet. Went yet to another Dr. and he instilled on me that I was going to be fine, and he could help me!
That hit home//// Good wishes. Oh JK, I am going to be flying to Baltimore Maryland on June 2nd. You are back east correct? Anyway, we are visiting my sister in law just getting over a bought with breast cancer. I will be in the area for a week with my family. John Loomis on the left coast.
>> Ever since I got diagnosed with PC I've been reading all I can grasp >> about the disease, as I think most men would do. [quoted text clipped - 29 lines] > For me the time came when I met the right doctor. I put myself in his > hands, and trusted him all the way! Good luck to you. Justin Case - 28 May 2005 21:10 GMT > For me the time came when I met the right doctor. I put myself in his > hands, and trusted him all the way! Good luck to you. This is excellent advice. I can't tell you how to find the "right" doctor but if/when you do, talk to him (or her) straight out and follow the counsel you receive.
Ken Bland
I. P. Freely - 28 May 2005 18:01 GMT "roger" <x@x.net> wrote >
> There's no way in hell I can remember all I read, all the statistics, > all the opinions and recommendations. And there is always new [quoted text clipped - 4 lines] > > How do you all deal with this? I read until I ran out of new stuff relevant to my decisions. I cut and pasted the most applicable of it (e.g., trial CONCLUSIONS, authoritative website snippets, book larnin') into a big Word file; condensed that into brief, pithy, abbreviated, jargonized, symbol-laden, categorized bullets; formed conclusions about treatment benefit vs risk; formulated a specific treatment protocol (i.e., do X now and Y when Z happens, etc.); and asked this forum and a university oncology department (including the collective who wrote "PC for Dummies") to review the whole package (about 3 pages containing probably 40-60 factoids plus my criteria) for accuracy and rationale.
Even though my protocol differed significantly from what the oncologists advised before seeing my paper, they a) concurred with every research fact I presented, b) agreed with even my rejection of their initial strong treatment recommendation, and c) said I opened their eyes to some new insights about PC.
THAT'S when I stopped reading. I'm convinced I've made the right decisions FOR ME, so I don't even think much about my cancer any more except to follow and read relevant new research reports introduced in this forum and subscribe to mailing lists from JAMA et.al. notifying us of new research. I'll start reading heavily again -- and thinking about it a HELLUVA lot more -- when my PSA says "It's Time!", and may act when PSA DT, clinical evidence, and/or symptoms say "It's Time". Next PSA check is due in a couple of weeks, 8 months post-op.
How do I remember it all? I don't. What I DO remember is my decision, and the fact that it was very heavily researched, reviewed, and approved. I also have my decision paper and its much longer source file a few clicks away for reference and a pile of PC books on the shelf for when it's time to read some additional chapters.
I.P.
I. P. Freely - 28 May 2005 20:34 GMT Re: others who have placed their trust in an excellent doc . . . IMO, the risk in that is that unless the doc you settle on KNOWS, UNDERSTANDS, and BELIEVES your lengthy, detailed, well-researched, thoroughly articulated short- and long-term criteria AND is willing and able to change her paradigm to accomodate them, she won't understand that you are a unique individual. Once they assimilated my criteria and my suggested protocol, a whole, large, diverse team of specialists changed their recommendation 180 degrees.
I'm not just aother 61-yo, athletic, T3cN0M0, Gleason 8, PSA 8.8, PSAV >2.0 prostate. I'm I.P. Freely; I care STRONGLY about some benefits and SEs, much less about other benefits and SEs, and about each benefit's and SE's specific impacts on my QOL and longevity. After months of reading and introspection to understand and define myself and my prefences and my options, my near and distant future depend now on whether I hit the benefit and risk bell curves head-on or skate around them.
My primary PC oncologist is great; personable, available for hours at a time, calls in other specialists including department heads REAL TIME during my visits, answers complex e-mails within hours, adds more details after having a whole oncology board review them, follows -- hell, WRITES -- cancer literature, calls me at home to talk for 30 minutes about treatment options, trained at Sloan-Kettering, performs and teaches RPs, and laughs at my jokes. Yet I would never place total faith in his or any other doctor's treatment mindset without my own extensive research, aided by him and reviewed by a diverse team of specialists.
I.P.
Justin Case - 28 May 2005 21:15 GMT > Re: others who have placed their trust in an excellent doc . . . > IMO, the risk in that is that unless the doc you settle on KNOWS, [quoted text clipped - 25 lines] > > I.P. My urologist was recommended by my primary care physician. What really sold me, after talking with the man, was when he said: "I'm a surgeon so you know what I'm going to suggest; but you might want to talk with a radiation oncologist first. If you do, here's the man I'd use."
Ken Bland
c palmer - 28 May 2005 18:36 GMT From: x@x.net (roger)
Ever since I got diagnosed with PC I've been reading all I can grasp about the disease, as I think most men would do. (Going to see my doc in two weeks now, in order to settle for a programma.) Now I've been lurking around for almost three months, reading hundreds of webpages with a thousand of subpages, reading books, participating in this NG and so on. All in purpose to choose the best treatment for me, to be prepared for the SE:s of each possible treatment, to know the statistic outcome and so on, and... soon my head have burned all of its fuses, and will suffer a major short circuit or explode! Knowledge is power, yes, but I think all this seeking of knowledge is going to drive me crazy soon, and my brain is going to develop a tumor a thousand times bigger than the one in my prostate because of all this acquisition of information! There's no way in hell I can remember all I read, all the statistics, all the opinions and recommendations. And there is always new information coming up that may alter your "picture" of it all. There must be a time where enough is enough or...? Even for us with PC there must be other things in life than PC or...? How do you all deal with this? /Roger =================
hi roger - when you get those words spoken to you....... "you have prostate cancer" your life just changed forever.
you want to go out and learn all you can about what you have, but you find out that there are so many different web sites and treatments, that you finding it more confusing than helpful. your mind hits overload.........which is where you are at now.
take a deep breath....... breath out....... relax........
go back to the basics. the hard and fast rules of the pca and the treatment for it.
pca normally grows slowly, but doesn't give anything back, which is why your choice of treatment is so important. you need a back up plan in dealing with this disease.
here's the basic rules......
if pca is gland contained, best choice of treatment is surgery. if you have recurrence of pca, back up plan is radiation therapy for a second chance of a cure.
if pca has made it's way into or passed the margins, then radiation might be the better way to go. if you were to have a recurrence of pca, then hormone therapy would be treatment of choice.
factors not discussed. age, heart condition, other health issues, personal views or side effects.
speaking of side effects, which do you want? with surgery, all damage is done up front, gets better as time passes. with radiation, side effects set in as time passes.
remember this....... after all you're read ......after all your research..... after all you're prepared yourself for........ the bottom line is this....... it's a crap shoot and each person is different and the outcome is different even given the same treatment.
read everything you can, think it through, decide on a choice of treatment and go forward from there and never look back.
best of luck,
~ curtis
knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc
Steve Kramer - 28 May 2005 20:18 GMT Roger,
If I may be so bold...
I believe you know the only viable solution.
You have cancer. It is only 1.4 PSA last time you checked. You have a Gleason of 6 if your Gleason-grader is any good.
All your research points to surgery if you want a cure; if you want to have sex when you're 50; and if you want to hold your urine when golfing. Close the books and go save your life.
 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 PSA .07 .05 .06 .05 non Illegitimi carborundum
> Ever since I got diagnosed with PC I've been reading all I can grasp > about the disease, as I think most men would do. [quoted text clipped - 31 lines] > ** SPEED ** RETENTION ** COMPLETION ** ANONYMITY ** > ---------------------------------------------------------- Steve U - 29 May 2005 02:28 GMT Roger, I kept reading until it started getting repeditive, and it seemed that no really new information of importance was likely to be found in a timely fashion. It was all a sea of doubt. The anxiety was making me crazy, so I made up my mind and placed my bet. Steve U
Alan Meyer - 29 May 2005 19:19 GMT > Ever since I got diagnosed with PC I've been reading all I can grasp > about the disease, as I think most men would do. [quoted text clipped - 3 lines] > > How do you all deal with this? As I see it, the way to make the decisions is to work hierarchically. Try to make the biggest decision first, then the next biggest decision, and so on.
To my mind, the biggest decision is surgery vs. radiation. They both have good records, but very different sets of side and after effects.
If you decide on surgery, the next big decision might be laparoscopic or retropubic. If radiation, it's external beam or implanted seed, or both. And there are then some choices within each of them.
In parallel with all this is the problem of which options are truly open to you and which are problematic. Some guys have insurance (or big bank accounts) and leisure, that will allow them to fly anywhere in the country for treatment. Others can only go to one of a few doctors and hospitals open to them.
If you're limited in your choices, you may find a wonderful surgeon and a lousy radiation oncologist or vice versa, and the choice of doctor becomes more important to you than the choice of technology. That's not an unreasonable approach and it's one that some in this group have made.
All the reading you have done will stand you in good stead whatever you decide to do. It may not have pointed you to a single "right" answer to the best treatment. I think in fact there is no one right answer. But it will allow you to know that whatever decisions you make, you've made them with your eyes open and with some appreciation of the facts.
Good luck.
Alan
Justin Case - 30 May 2005 21:18 GMT > To my mind, the biggest decision is surgery vs. radiation. They > both have good records, but very different sets of side and [quoted text clipped - 27 lines] > > Alan Unless I've missed it -- a not unreasonable assumption -- nobody here has mentioned prostate cancer freezing, cryosurgery. When I underwent surgery four years ago cryosurgery, while practiced in some localaties, had not gained any strong local support. Now the picture has changed and my urologist-surgeon started about six months ago doing some cryosurgery. He says it's way too early to talk about effectiveness and he only uses the procedure, so he says, for those men who fear "surgery by knife."
Any reader here care to comment?
Ken Bland
Steve Kramer - 31 May 2005 01:38 GMT There are at least half a dozen who have visited here and who had cryo. Stephen Jordan is probably the most prolific. After 1½ years he is on HT. But there were also Robert Austin (PSA 0.21 after one year), Scrapiro (who, after 4 years, is currently on Zolodex and Casodex due to rising PSA), Canada Bob who didn't stick around long enough to inform us of his results, Ed Novack who hasn't reported in after Oct 2004, Frank (who is 1.08 after six months), and Jack in Phoenix who's treatment also failed. However, three of those had a Gleason of 9.
 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 PSA .07 .05 .06 .05 non Illegitimi carborundum
> > To my mind, the biggest decision is surgery vs. radiation. They > > both have good records, but very different sets of side and [quoted text clipped - 39 lines] > > Ken Bland Stephen Jordan - 31 May 2005 02:08 GMT > Unless I've missed it -- a not unreasonable assumption -- nobody here > has mentioned prostate cancer freezing, cryosurgery. When I underwent [quoted text clipped - 6 lines] > > Any reader here care to comment? OK, I'll rise to the bait. Herewith follows the short version of malpractice.
On November 22, 2003, I underwent cryosurgery. My tumor was a T2a on DRE, graded Gleason 9, yes nine, PSA 5.7. Should have been T2b.
The uro, who was just beginning to do such procedures, assured me in advance that my prostate would, along with the tumor, be killed and "resorbed" by my system.
Not so. My PSA never fell below 1.24 ng/mL, and rose at an alarming rate after the procedure. A second biopsy was performed on July 20, 2004. It disclosed a Gleason 8 tumor in the opposite lobe of the gland. It had obviously not been affected to any substantial extent by the cryo *8 months prior*.
I was beginning to learn. After firing the uro and hiring a rad onc, I ordered that the specimens from the last biopsy be sent to Bostwick Labs, one of the few reliable labs in the US. The report came back confirming the Gleason * tumor, which was quite healthy notwithstanding the cryo, and "ATYPICAL SMALL ACINAR PROLIFERATION HIGHLY SUSPICIOUS FOR BUT NOT DIAGNOSTIC OF MALIGNANCY. Mild atrophy. Mild inflammation." (Emphasis in original).
I had to undergo salvage IMRT with adjuvant ADT. The IMRT ended in October, 2004; the ADT continues.
So far, so good.
Bottom line: there are men who are pleased with their cryo results, and the others such as myself. The one surgeon that I know of -- and there are others -- who has satisfied customers is a uro, Douglas O. Chinn MD, at Suite 101, 65 North First Avenue, Arcadia, California 91006. His telephone number is (626)574-7111.
FWIW, I have been informed that he will charge $300 to review my records.
He also does HIFU (High Intensity Focused Ultrasound) at his clinic in Baja California (it's not approved in the US of A)
Best of luck, but be careful.
Regards,
Steve J
"There is nothing sadder than the brutal murder of a beautiful theory by a gang of ugly facts." --Francois, Duc de la Rochefoucauld
Stephen Jordan - 31 May 2005 02:35 GMT On May 30, I wrote in pertinent part:
> The report came back confirming the Gleason * tumor, Of course, that should be a Gleason *8* tumor....
Rats.
Steve J
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