Medical Forum / Diseases and Disorders / Prostate Cancer / October 2007
Have decided on "watchful waiting"
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Sy - 19 Oct 2007 11:51 GMT I was recently Dxiagnosed with Prostate Cancer. I will be 60 in January.
Gleason Score-6 (3+3) PSA-3.17 Stage -T1c PSA-Doubling-22 months
I was originally hoping to have CyberKnife treatment but my Insurance carrier (Oxford Health Plan) would not cover it.
I saw my Urologist Oncologist this afternoon in order to start preparing for Low Dose Brachytherapy (radioactive seeding). We then spoke about a 2 month regimen of Eligard prior to Seeding.
Then I asked him point blank "Do you think it would be imprudent to keep an eye on my PSA level and do an 'active surveillance' approach. He said that my numbers (PSA, Gleason & Staging) were low enough that "it would not be imprudent" as long as I got a PSA test every 3 months and understood that if there was a "significant" increase in PSA velocity that I would then have to undergo some type of treatment. I also pointed out that I was aware that this approach is typically used on older men but that I'd seen recent studies with men 55-60. He said he was aware of a recent Swiss study like that.
I made sure to stress to him that I was not trying to twist his arm or make him tell me what he thought I wanted to hear. He told me that it would be ok to take this approach and to keep an eye on it. Best news I've had in months.
Not only will I keep an eye on it I will keep all 4 of my eyes on it.
Sy
jloomis - 19 Oct 2007 13:39 GMT I am not sure what you are waiting for? Biopsy shows cancer. Waiting for an increase in PSA would indicate a spread of cancer. The cancer is much more difficult to slow down or stop when it is spread. I do understand your position and diagnosis, but do not understand waiting. Kind of like watching a slow fuse to a bomb. I do wish you the best and respect your choice and anyone's choice in this battle. john loomis
> I was recently Dxiagnosed with Prostate Cancer. I will be 60 in > January. [quoted text clipped - 29 lines] > > Sy Sy - 19 Oct 2007 16:26 GMT Thanks for your support but I have weighed the personal pros and cons, have access to an excellent Urologist-Oncologist and we came to this decision.
There is a large body of evidence indicating that this is a rational approach for "selected" patients.
Sy
> I am not sure what you are waiting for? > Biopsy shows cancer. [quoted text clipped - 39 lines] > > > > Sy safire - 19 Oct 2007 19:42 GMT > Thanks for your support but I have weighed the personal pros and cons, > have access to an excellent Urologist-Oncologist and we came to this > decision. > > There is a large body of evidence indicating that this is a rational > approach for "selected" patients. Additionally, I believe the guidelines published by the National Comprehensive Cancer Network support your decision. If you haven't checked:
http://www.nccn.org/patients/patient_gls/_english/_prostate/contents.asp
I asked my uro the same question last year and he responded like yours did ("it is not at all imprudent"). He did, however, suggest a larger biopsy (2x 12 vs. 2x 3 before). That yielded a higher Gleason of 4+3. Subsequently I had a DaVinci RP. The cancer is gone, but one year later I still suffer from dull abdominal, bladder and urethral pain daily, while potency has not returned. Not clear what causes the pain, but your decision to postpone action indefinitely certainly won't have any adverse side effects.
> Sy Steve Kramer - 20 Oct 2007 00:23 GMT > Thanks for your support but I have weighed the personal pros and cons, > have access to an excellent Urologist-Oncologist and we came to this > decision. Oops! I make it a point not to comment once a decision is made. Disregard my last post.
 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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04 10/11/07 Non Illegitimi Carborundum
Sy - 21 Oct 2007 13:04 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
Hi Steve,
That's ok and I think it's both considerate and wise to keep in mind that these decisions are very definitely a compilation of having prudently studied the subject matter oneself, having consulted with professionals and then factoring in the personal risk/reward ratios as to which direction to go.
Seems there are one or two people here who aren't "satisfied" with that and are basically humorless busybodies demanding that you "prove" your rationale to them.
I think that one in particular believes himself to be a highly regarded Prostate Oncologist and has likely booked a flight to Stockholm in order to be ready to accept his forthcoming Nobel Prize in Medicine.
There are medications for people like that :)
Thanks,
Sy
> > Thanks for your support but I have weighed the personal pros and cons, > > have access to an excellent Urologist-Oncologist and we came to this > > decision. > > Oops! I make it a point not to comment once a decision is made. Disregard > my last post. Steve Kramer - 21 Oct 2007 17:55 GMT > [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 6 lines] > professionals and then factoring in the personal risk/reward ratios as > to which direction to go. Thank you, but it is not as much a consideration as it is a principle by which I try to stick. I hope you did not consider it an endorsement of your decision.
Personally, I trust implicitly that you have prudently studied the subject matter and consulted with professionals and read that which we recommended. There is no doubt that you then factored in personal risk. I apparently scared you so bad that you chucked the studied matterial, professional advice, and annecdotal opinion and are now risking the quantity and quality of your life out of gut-wrenching fear and attacking your supporters (see below) like a mad dog who they are trying to feed.
> Seems there are one or two people here who aren't "satisfied" with that > and are basically humorless busybodies demanding that you "prove" your [quoted text clipped - 5 lines] > > There are medications for people like that :) You have been between kind and neutral to me, but you have been instulting to my friends, antisocial to the rest, and generally, metaphorically, a cancer to this support group. If you want someone to tell you, "Good decision, Sy. It's best to let sleeping dogs lie." you've come to the wrong place. We want to help you, not enable you.
Gonas - 21 Oct 2007 23:57 GMT Not clear what causes the pain, but your decision to postpone action indefinitely certainly won't have any adverse side effects.
but possibly the one major side effect ..... sorry just had to respond... had radical/pc 3 yrs ago; still reading .001 no side effects whatsoever.
>> [[ This message was both posted and mailed: see >> the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 34 lines] > decision, Sy. It's best to let sleeping dogs lie." you've come to the > wrong place. We want to help you, not enable you. djperry42@sbcglobal.net - 19 Oct 2007 13:48 GMT Sy, it's really difficult to assess what the best choice is. My numbers were similar to yours at the same age except my PSA max was 4.9. I chose surgery in 2003 and all is well (inspite of the side effects) although I probably still fret over the upcoming PSA's as much as you will. I can't help but think that there must have been thousands of men in past years who had our numbers and never knew they had prostate cancer (pre-PSA days), men who went on with their lives and eventually died of something else. It's a real dilemma for those of us in those middle ranges. All the best with your choice. Dave Perry
> I was recently Dxiagnosed with Prostate Cancer. I will be 60 in > January. [quoted text clipped - 29 lines] > > Sy Dave P - 19 Oct 2007 15:37 GMT This isnt' mine but a person from California. He has done what he calls agressive watchful waiting now for over 12 years. He was diagnosed with a PSA of 7.6 it went down to 2.1 then up to 19. It is currently 17 Gleason 3+3=6. He swears by the protocol. I do some of these things but not all. Just wanted to pass this along. Good luck.
The Protocol for Watching Waiting 1.) Vegetarian type low fat diet: No meat, poultry or dairy products. Occasional fish but I minimize bottom fish & shellfish. I Avoid processed foods when possible, and eat primarily organically grown produce. 2.) Low Caffeine / Minimal Alcohol : I consume pomegranate juice daily. I also try to drink wheat grass at least once per week. And always drink filtered water. My body goes not get along with caffeine so I do not drink green tea. I do however drink rooibos tea, this tea has higher concentrations of antioxidants and phyto-phenols, but is caffeine free. I drink a very occasional beer or red wine. 3.) Meditation: I practice Qi Gong regularly, not only a healing art but a way to reduce stress and gain inner peace. (Qi Gong is an ancient healing technique from China, it is a combination of accupressure, breathing techniques, and movement exercises designed to restore energy as well as heal the body.) 4.) Exercise: Moderate daily exercise. Walking or running for at least one half hour everyday. A weight training program is practiced every other day emphasizing flexibility. 5.) Support Group Participation: Cancer patients in support group settings live twice as long as non-members. I started my own local group with emphasize on "healthy life-style" 6.) Aggressive Vitamins & Supplements: See below. 7.) High Performance Hygiene Regimen: Designed to remove stress from the immune system and allow it to concentrate on healing. Kenneth Seaton, PhD has designed a hygiene program that reduces bacteria from the high concentration areas: under the fingernails, the tear ducts, and nasal passages. The program not only has kept me from colds, flu, and allergies, but has also increased my serum albumin level, a barometer of longevity.( Average American albumin level is 4.3, cancer patients generally have albumin levels of less than 4.0. My albumin level 3 years ago was 3.6, my latest albumin test showed a level of 4.4) 8) Personalized Metabolic Nutrition: I have been tested to determine which of the four Metabolic Types I am. I consume foods appropriate to my metabolic type. I am a Group I, sympathetic type, this means that I metabolize carbohydrates well, but have difficulty with fats and proteins. This is a common type for people diagnosed with cancer. I have been eating for my Metabolic Type for over five years, with good results. 9) Enhancing the Immune System: My primary goal has been to bolster the immune system and make it as strong as possible. I take a number of immune enhancing supplements. SUGGESTIONS: Minimize: Candy Sugars Fats Poultry Processed food Sweets Caffeine Tap water Meat Dairy products
Maximize: Organic Produce Beans Fermented Soy Products (miso, tempeh) Whole Grains Brown Rice Fresh Vegetables and Juices
Supplement & Vitamin List: DAILY Multi-Vitamin Daily Healthy Prostate & Ovary Formula 9 caplets per day, 3 at each meal Artemisinin 2 capsules, 2 times per day / away from food Bakers Chocolate - no dairy or sugar 1oz. daily Vitamin D-3 2000 IU Curcumin/Tumeric 2000 mg Ten Mushroom Combination 12 capsules, 4 at each meal Selenium 200mcg Arctic Omega 3 Fish Oils 1000 mg Modified Citrus Pectin (Pectasol) 12-18 capsules per day Vitamin C 6000 mg Maca Root Extract As per label instructions Lycopene 15 mg Boswellia / AKBA 1-2 capsules daily
Supplement Strategy: I have learned over the years that I get best results with my prostate related supplements when I take them on an intermittent basis. I rotate a number of prostate specific men's supplements on a regular basis.
The Keys: Have faith reduce stress levels eat a healthy low fat, whole grain vegetarian type diet get a minimum of eight hours of sleep a night never get complacent, even after treatment do your due diligence and homework before you make a protocol decision
Alan Meyer - 19 Oct 2007 23:53 GMT > This isnt' mine but a person from California. <... extraordinary list of supplements elided ...>
Your friend must be one of the healthiest cancer patients on the planet.
Still, his current PSA of 17 is scary. I had thought that watchful waiting isn't usually recommended for patients with PSA > 10. I also wonder if his Gleason 3+3 is a recent reading from an expert lab, or is just what he was told in a long ago biopsy.
Although he's done well so far, if I were him I might establish a clear cutoff point and say, "when my PSA reaches this number, I'm going to get treatment." There is a danger that each time he is checked he'll say, "it only rose 2 points since the last treatment, then, now it's only another 3 points up." And before he realizes it, he has mets.
> ... > Supplement Strategy: > I have learned over the years that I get best results with my prostate > related supplements when I take them on an intermittent basis. I > rotate a number of prostate specific men's supplements on a regular > basis. ...
Now there's an innovation. I wonder why he does that.
Alan
Bob C. - 19 Oct 2007 15:50 GMT > Not only will I keep an eye on it I will keep all 4 of my eyes on it. > > Sy My cancer was not discovered until it was beyond being curable. I have gone through a number of treatments knowing that a cure was not very likely with current technology. You on the other hand, could likely go through far fewer ordeals, and have far fewer side effects, and be cured!!! Whatever you do, I hope that you do it before the cancer has crossed the line between curable, and not. It might be very painful someday to look back and know that if only you had reacted a year sooner, a month sooner, you could have been cured. Best of luck to you, I hope you have 100% success with whatever route you pursue. It is not an easy decision, I know.
BH - 19 Oct 2007 16:15 GMT Sy, all of us have had to make our own decisions about treatment based on what we know and how we feel at the time. While many in this group would probably choose a different course of action based on what we know about you, I'm sure we all respect your decision and wish you the best. Please continue to keep us informed of your PSA results and know that we will continue to support you in your future decisions.
Burney
>I was recently Dxiagnosed with Prostate Cancer. I will be 60 in >January. [quoted text clipped - 29 lines] > >Sy Burney dot Huff at Mindspring dot com
gvk2six@yahoo.com - 19 Oct 2007 20:57 GMT > I was recently Dxiagnosed with Prostate Cancer. I will be 60 in > January. [quoted text clipped - 3 lines] > Stage -T1c > PSA-Doubling-22 months
> Then I asked him point blank "Do you think it would be imprudent to > keep an eye on my PSA level and do an 'active surveillance' approach. [quoted text clipped - 12 lines] > > Not only will I keep an eye on it I will keep all 4 of my eyes on it. Sy, it would be interesting to some of us with similar PSAs to know why your 3.17 psa score led to a biopsy. Could you include your prior psa's over the preceding years. Apparently you were about 1.6 22 months earlier. So was the biopsy done entirely because of the acceleration "jump" in psa rather than the 3.17 number?
I'd say your "watchful waiting" is very reasonable. Or perhaps it should be called EXPECTANT MANAGEMENT OR ACTIVE SURVEILLANCE as they do at the John Hopkins program. http://urology.jhu.edu/prostate/advice1.php
They have some interesting criteria and surveillance protocols they follow.
My last psa dropped to 1.6 after having a blip up to 2.9 I feel lucky no one wanted to rush me into a biopsy or I may well be in your position of uncertainty after getting a 3+3=6 score. I have no doubt there is some PCa in my prostate now,(unknown Gleason) but as long as my PSAs stay low and slow I'm just going to keep doing my own version of "surveillance" along with some of the "reasonable" dietary changes. I don't believe in the kitchen-sink approach to natural cures, supplements, etc.
MY list of "reasonable" changes with some scientific basis include the following. I might add that almost all of them are good for general health, especially cardiovascular health, even if they don't slow PCa that much, and far more men, even those with PCa, are gonna die of heart disease rather than PCa.
1. Fairly to very low animal product diet except for some fish such as salmon 2. Fairly high fruit and veggie intake (especially the cruciferous ones) 3. Some soy, tofu and soymilk, but not overboard 4. Teas, green and black 5. Vit-D3 supplement (or more sunlight....) 6. Pomegranate juice pure 8 ounce per day 7. Curcumin 500 mg per day (only about double what people get daily in India in their diet) 8. Keep body weight low/lean 9. Exercise
The only one that costs much is the Pomegranate juice (about $1.00 per day from Trader Joes) Two reports address its affect on PSA doubling time which may interest you. I figure if it slows doubling time post- surgical, then why wouldn't it slow doubling time pre-diagnosis?
Well, good luck. Keep reading the news. If the weight is way up there, slowly bring it down. It seems the more I read on many cancer issues, excess weight is one of the main things associated with "inflammation" leading to some cancers beginning and advancing. Even the famous Dr. Walsh is apparently coming to the "inflammation" conclusion and cites the following researchers in a CNN interview http://transcripts.cnn.com/TRANSCRIPTS/0301/04/smn.22.html http://urology.jhu.edu/newsletter/prostate_cancer75.php http://www.webmd.com/prostate-cancer/news/20070315/0besity-may-up-prostate-cance r-deaths
gvk2six
Sy - 20 Oct 2007 03:14 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
In article
Yes, the biopsy was done because of the doubling and not the PSA level of 3.17. I have a very sharp Internist who suggested I see a Uro..
The Uro gave me a DRE and felt nothing but said I should have the ultrasound biopsy. Figured he needed it for his kids' tuition. As it turns out I was happy he did it.
Yes, "Active Surveillance" is a much better term. Despite that people tend to freak out when you tell them that's your strategy.
Sy
<1192823857.161263.14860@e34g2000pro.googlegroups.com>,
> > I was recently Dxiagnosed with Prostate Cancer. I will be 60 in > > January. [quoted text clipped - 80 lines] > > gvk2six MAS - 19 Oct 2007 23:39 GMT Sy, follow whatever treatment plan to desire. It's your plan and no one else's.
I do have a question/cpmment. Seems that your approaches have centered around non-invasiveness; Cyberknife where there is no long-term result known and Watching Waiting/Active Surveillance where there is a known long-term result. At the surface the choicees seem in conflict. Is non-invasive treatment the most important thing in your life today?
What is known, is that you have cancer. How you deal with that fact it is your business. At some point a micro-fiber of cancer will leave the prostrate bed and float around most likely through your vascular system or lymphatic system until it lands and grows. The result then is Advanced Prostate Cancer.
Some day your Gleason will not be 3+3, but rather 4+3 or 3+4, etc. The higher the Gleason, the greater the percentage that a micro-fiber spreads your cancer.
Note that I have not mentioned PSA. PSA score is only an indicator. I am reminded of a good friend and co-worker who at age 40 insisted on a PSA test and again at 41. PSA went from 1.3 to 2.7 in a years time. The resulting biopsy was Gleason 3+4.
I remember when my Radiation Oncologist told me that his only concern was that a micri-fiber (and by the way, I mean not so small that in present day medicine is not viewable) escaping. The odds were 92% that it had not. Twelve months later we found out that it had escaped. So I was in the eight percentile group.
Recurrent cancer is usually attributed to the above process, regardless of the length of time it floats around in the body. I suggest that you ask your treatment specialist what you odds are.
I wish the best for you and many years of good health. Take care.
Gourd Dancer
> I was recently Dxiagnosed with Prostate Cancer. I will be 60 in > January. [quoted text clipped - 29 lines] > > Sy Sy - 20 Oct 2007 03:14 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
What is it about some people who in one breath say something like "I respect your treatment plan and you are the only one to decide" and in the next breath feel a need to construct a sinister "possible" future scenario?
I think your comments are quite simple minded. Unfortunately you were in the 8% group. In my mind 92% are damn good odds especially given the vagaries and SE associated with various more invasive techniques. I don't plan to sit on my a.s and will be re- assessing my situation at regular intervals.
Sy
> Sy, follow whatever treatment plan to desire. It's your plan and no one > else's. [quoted text clipped - 67 lines] > > > > Sy Steve Kramer - 20 Oct 2007 12:38 GMT > [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 9 lines] > I don't plan to sit on my a.s and will be re- assessing my situation at > regular intervals. I think it might have more to do with the vagaries of newsgroup mechanics. You come here looking for opinions and you make a decision.
Somewhere between, Gourd Dancer and I were still caught in the 'seeking opinions' stage, or at least I was. Once I read further, I clearly told you to disregard my previous email. Gourd has been around here a long time and I think I can assure you neither of us are going to say, "I told you so" if you end up with advance prostate cancer.
We're just trying to help, Sy. And you are awful quick to pull the trigger on your perceived grievances. Gourd's comments were not simple-minded. They were based on what he's learned from having this disease for almost six years and sticking around this support group helping neophytes like yourself. You and he are about the same age, but in when it comes to the disease he is vastly your elder and you ought to learn to respect your elders.
rosbif - 20 Oct 2007 13:49 GMT >[[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 3 lines] >the next breath feel a need to construct a sinister "possible" future >scenario? Congratulations on your decision. In fact the mood here - to my mind anyway - has softened a lot since 3 years ago when talk of WW was treated either as heresy or the gibberings of a madman. In the meantime, WW has gained some respect as a strategy for 'selected' patients although clearly in this ng, most have had or are about to have treatment so that's what gets talked about the most.
Please don't read anything sinister into this, but I'm interested in the arithmetic of doubling times of long-term watchful-waiters. Does anyone know if typical PSA dynamics have been charted for this category of patients? Are doubling times expected to remain approximately constant for the duration of the progression of the disease? If constancy was expected, a 15-year period without treatment and a 2 year doubling time would result in 7.5 doublings and multiply your current PSA reading by a factor of approx 180, which would put your current PSA of 3.17 at nearly 574 at age 74. I realise this is a gross oversimplification. Do doubling times contract or expand? Do they perhaps follow no clear pattern, with periods of rise alternating with phases of fall? Is there any data at all on this?
Sy, I hope you will return as often as you like to let us know how you are getting on - PSA results and all - to throw some light on this mystery, and also on your attitude - changing or otherwise - to your WW plan. I know you've ruffled a few feathers here, but frankly that is a trifle when compared with our collective need to figure out what is going on with this wretched disease. Every little helps. Should you decide to back out (I did), it would be no less interesting to those who are thinking of taking the WW route themselves to know something about your changing perceptions, and the critical points for your evolving strategy. Very best of luck, I hope WW allows you to die of something other than PCa, but even if the plan falters, I hope no one here will say "I told you so!". Keep in touch.
rosbif - 20 Oct 2007 14:15 GMT >which would put your >current PSA of 3.17 at nearly 574 at age 74. I forgot, in your case, 22 month doubling. 15 years gives 8.18 doublings 2^8.18 = 290+ PSA 3.17 becomes 920 in 15 years.
There's no science here at all, just arithmetic. The figure is probably entirely bogus!
ronju99 - 20 Oct 2007 14:22 GMT rosbif, This article recommends intervention of a PSDT <3 years and surveillance
> 3 years. http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6X10-4DJ3X47-1&_user=1 0&_coverDate=01%2F01%2F2005&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000 050221&_version=1&_urlVersion=0&_userid=10&md5=c6a4a799a2f92ccb5bf543a147aeb666
Ron S.
rosbif - 20 Oct 2007 14:47 GMT >rosbif, > This article recommends intervention of a PSDT <3 years and surveillance >> 3 years. >http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6X10-4DJ3X47-1&_user=1 0&_coverDate=01%2F01%2F2005&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000 050221&_version=1&_urlVersion=0&_userid=10&md5=c6a4a799a2f92ccb5bf543a147aeb666 > >Ron S. Thanks Ron, interesting. Over 15 years, a 3-year PSADT does make a huge difference to the cumulative arithmetic when compared with the 2-year. (5 doublings turns 3.17 into 100+)
Most notable in this study is that once you eliminate all those with PSADT<3 years, the remainder have a median DT of 7 years with almost half of them with a better than 10-year doubling.
That would be nice!!
MAS - 20 Oct 2007 20:42 GMT Sy, sometimes the truth is simple. I can assure you that cancer and its treatment is not a vagary. It is neither, unpredictable nor erratic. It is not like the weather, economy, or a blond. It is what it is.
I do not have to construct any sinister scenario. It is what it is.
I truly wish you the best and would never be critical of your treament choice. It is what it is.
Gourd Dancer
> [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 90 lines] >> > >> > Sy Sy - 20 Oct 2007 22:11 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
Gourd,
I have a background in science and some sophistication with statistical analysis. When I started to study the topic of Prostate Cancer I never in my wildest dreams would have believed that there would be such a seeming lack of unamimity in this field.
About the only thing there seems to be consensus on is where the prostate is located in the body! Far from being simple (and I am an adherent of Occam's Razor) this field , because of the difficulty of parsing out "what variable is doing what and by how much and for how long and at what rate?" etc.etc.. is inherently unsimple to put it mildly. That's not even considering the subjective and personal calculus that the patient has to integrate in their choice of a treatment plan.
Regarding the blonde though, your point is well taken :) And by the way what's a "Gourd Dancer"?
Thanks,
Sy
> Sy, sometimes the truth is simple. I can assure you that cancer and its > treatment is not a vagary. It is neither, unpredictable nor erratic. It is [quoted text clipped - 101 lines] > >> > > >> > Sy MAS - 21 Oct 2007 08:06 GMT Sy,
It's an Indian thing. I am a member of the Tia-Piah Society. Thanks for asking. I can best put it this way:
The Tia-Piah Society is a Kiowa Veterans Society. The Dance is the Tia-pea-go. A Chief's Dance symbolizing that he is ready to go, ready to die, Tia-pea-go. - Attwater Onco
Spawned on the field of blood, Colored by the Tdiepei-ai-gah, skunkberry red, Taught by Red Wolf's vision, his dance The Whip, Rope, and Bugle proclaim us. - James Auchiah
Gourd Dancer
> [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 150 lines] >> >> > >> >> > Sy Sy - 21 Oct 2007 13:04 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
Gourd,
Very interesting.
Question: I assume "Attwater Onco" a person's name? I
f it is it's more than a little ironic that I read it as short for "Oncologist".
Sy
> Sy, > [quoted text clipped - 168 lines] > >> >> > > >> >> > Sy MAS - 22 Oct 2007 03:46 GMT LOL, Onco is a Kiowa family name. His first name was Attwater. No correlating to Oncologist. Wonder how the name would have been perceived if it came from his brother, Perry.
> [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 204 lines] >> >> >> > >> >> >> > Sy DominicM - 24 Oct 2007 12:35 GMT > [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 136 lines] > > - Show quoted text Your comment on lack of unamimity is I think the most frustrating part of this disease. For me when I was 49 with a Gleason 8 at diagnosis there was no uncertainly. I wanted and needed to be treated. But even then there were a myriad of options and conflicting opinions. Now I face another conumdrum, after RP and Radiation my PSA is rising and <4mo doubling time and no mets :). There are no simple decision trees for my profile. With a gleason 8 and fast doubling time active surveillance does not seem like am option I want to pursue. I'll talk to experts at other Nat'l Cancer Centers and then take action.
Any case good luck to you. You must have nerves of steel.
Alan Meyer - 19 Oct 2007 23:47 GMT Sy,
It sounds to me like you know what you are doing and have made an informed and intelligent choice.
Best of luck with it.
Alan
Steve Kramer - 20 Oct 2007 00:20 GMT > I was recently Dxiagnosed with Prostate Cancer. I will be 60 in > January. [quoted text clipped - 3 lines] > Stage -T1c > PSA-Doubling-22 months I here these things and wonder what is it the people wait for. To be hit by a truck? Crash in an airplane?
I'm surprised you know the PSAD already, and I'd wager it will be decreased next time you're tested. But, even if not, do you feel better going into a possible curative treatment with a PSA of 6.34 in 22 months and a Stage of T2c? Or T3c?
Your choice and if you enjoy gambling, maybe it's better than the SEs of treatment. But, one of the SEs is '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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04 10/11/07 Non Illegitimi Carborundum
ronju99 - 20 Oct 2007 12:39 GMT Hi Sy, I noticed that you didn't mention in your signature your prostate volume , positive cores and percentages. You may get even more questions as to your choice than you already have.
As far as the apparent conflict in ones opinions you mention, let me say that because you are new to this disease and forum, you will eventually realize that in time we all become family to some extent. We have been there an done that and recognize that it is eventually your choice, however if we believe that you may be taking the less prudent road then we will inject our consul just because we really do care for anyone that finds themselves in a similar situation.
One other observation I've noticed is that you appear more closed minded than the ones on this forum. WE make suggestions and reference our opinions based upon experts in the field. I haven't seen any references from you supporting your position. You only state that you have reliable uro and oncologist to lean on. If that is true, then why did you seek out opinions from this forum of non-experts?
Also, thanks for the reply?
Ron S.
ronju99 - 20 Oct 2007 12:41 GMT Hi Sy, I noticed that you didn't mention in your signature your prostate volume , positive cores and percentages. You may get even more questions as to your choice than you already have.
As far as the apparent conflict in ones opinions you mention, let me say that because you are new to this disease and forum, you will eventually realize that in time we all become family to some extent. We have been there an done that and recognize that it is eventually your choice, however if we believe that you may be taking the less prudent road then we will inject our consul just because we really do care for anyone that finds themselves in a similar situation.
One other observation I've noticed is that you appear more closed minded than the ones on this forum. WE make suggestions and reference our opinions based upon experts in the field. I haven't seen any references from you supporting your position. You only state that you have reliable uro and oncologist to lean on. If that is true, then why did you seek out opinions from this forum of non-experts?
Also, thanks for the reply?
Ron S.
Sy - 20 Oct 2007 22:38 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
Hi Ron,
I have read and studied this matter in great detail. In fact friends of mine had been telling me that I was "overdoing it" with my research.
I have read the literature from Johns Hopkins, Stanford, Mayo, NCI, Walsh, Strum etc., and the most credible sources that are available. Hundreds of them. I always double check the veracity of studies to confirm their objectivity as best as is possible. One of my best friends is an Internist at Georgetown and he has referred me to his associates for their feedback. That's not even counting my own Doctors here in New Jersey.
That very intensive research coupled with my own very personal determination of the risk/reward ratio involved brought me to my decision, at least for the time being.
I appreciate the feedback but I think I've been far from close-minded having considered the entire gamut of choices from radical prost. to "active surveillance". Maybe you are confusing "close-minded" with "resolute".
If you'd read some of my earlier points it might disabuse you of some of your ideas. Most of the feedback I've received on this decision of mine has been quite supportive and understanding and didn't require an "explanation" or my need to have to corroborate my "game plan". I reiterate what I've said above. I wonder if in some respects the idea of "active surveillance" really scares some people?
And while I appreciate your interest, do you really think that you know better? Would you like me to send you my biopsy slides for your analysis (no pun intended)?
Sy
In article <adb30b626ef2cef705f51d8c4399492c@localhost.talkaboutsupport.com>,
> Hi Sy, > I noticed that you didn't mention in your signature your prostate volume , [quoted text clipped - 19 lines] > > Ron S. ronju99 - 21 Oct 2007 00:01 GMT The pun wasn't necessary, Your numbers particularly the positive cores and percentages along with your doubling time was sufficient. What many of us do here on this forum is learn more about this disease through our research and the exchange of information from different members that also have done quite a bit of independent research themselves. Probably considerable more than even you have as many have been at it for a number of years. Many have as much if not more credentials than even yourself.
When I say closed minded, I am referring to your lack of exchange with members that make an attempt to communicate with you. We are NOT trying to tell you what to do. But because you don't provide the sources for your thought processes so others may view them, then how can anyone question your rationale. It seems that if one was going to make a possible life altering decision that he would want his bases for that decision to be critiqued to avoid mistakes that may negatively effect future outcomes.
Also, we may be missing something in our own research and if you would enlighten us it would allow us to pass that info on to others.
I sent you a link reference positive cores and percentages from Pubmed but never received any response from you.I can assume it wasn't relevant to your case.
To sum up: You don't share any of your research that is relevant to your case for scrutiny. However, you ask our opinions on the matter in spite of all the research and experts at your disposal. Also, maybe I don't get it but my reading of the posts shows just the opposite. Most here don't support your decision for active surveillance. Your doubling time is too short and your positive cores are 75% of one side with 40%,60% and 80% respectively. That doesn't qualify you for active surveillance. Every authority that I've read recommends treatment. Of course you could show us otherwise. Help us learn as we try to help you.
Ron S.
Sy - 21 Oct 2007 03:34 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
Ron,
I am not writing a research paper for you and as such don't have to give you citations to bolster my position and hence my personal decision.
While I appreciate any well-intentioned feedback yours has a pedantic, coercive and condescending tone that I find off-putting. There is a zealotry which seems inappropriate.
I find it quite interesting that you make a pretense of statistical understanding yet you cite your own personal case and it's unfortunate outcome as evidence of something, yet it is anecdotal and means very little in a larger sense. Anyone who has ever taken even an Intro. to Statistics course know from day 1 that anecdotes mean nothing. In fact, anecdotes mean LESS than nothing.
Also, you might want to lighten up a little, apparently having taken offense at as mild and goofy a pun as one can imagine ("according to your analysis") .
I think you should give yourself and this particular topic a rest.
Sy
<4704427b231d1bcb4277f4545a36d199@localhost.talkaboutsupport.com>,
> The pun wasn't necessary, Your numbers particularly the positive cores and > percentages along with your doubling time was sufficient. What many of us [quoted text clipped - 31 lines] > > Ron S. rosbif - 21 Oct 2007 09:40 GMT >Anyone who has ever taken even an Intro. to >Statistics course know from day 1 that anecdotes mean nothing. In >fact, anecdotes mean LESS than nothing. And yet you asked this question...
>Anyone have experiences with CyberKnife treatment? ronju99 - 21 Oct 2007 13:20 GMT Karl Menger states that; "Entities must not be reduced to the point of inadequacy." and "It is vain to do with fewer what requires more." Anti-razor
I am impressed by your eloquent use of the English language. What can I say after being so thoroughly chastised. Ron S.
Larry Sabo - 21 Oct 2007 13:51 GMT >[snip] What can I say after being so thoroughly chastised. > >Ron S. PLONK him, as I am about to do. He appears to be wasting his and our time here, except that it provides him an opportunity to insult those who try to offer help. I don't recall ever coming across anyone so arrogant and obnoxious.
Larry
rosbif - 21 Oct 2007 16:50 GMT >>[snip] What can I say after being so thoroughly chastised. >> [quoted text clipped - 6 lines] > >Larry I'd have to agree.
I was wrong to give him the benefit of the doubt.
Sy - 21 Oct 2007 22:14 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
Larry, I am not "trying" to insult anyone and appreciate any and all feedback provided that it's presented in a manner which itself is not "arrogant" and which shows some respect for the person (me) who makes a possibly life altering decision without having to require a doctoral thesis to justify it.
Sy
> PLONK him, as I am about to do. He appears to be wasting his and our > time here, except that it provides him an opportunity to insult those > who try to offer help. I don't recall ever coming across anyone so > arrogant and obnoxious. > > Larry Sy - 21 Oct 2007 22:37 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
In article
That was Karl "Menninger" by the way.
Regarding the quote it seems to be saying what I have been saying from the outset, that Prostate Cancer is quite complicated not simple.
Sorry for chastising you but can you understand that many of your comments were badgering and condescending?
What's with the heavy handedness about trying to make your point? I'm just a collection of "pixels" on your screen. You don't know me so what's with all the handwringing?
Why not just say "I believe Active Surveillance is not a wise course to take" or something like that and be done with it.
Sy
<2cd4bff234471ea46aa449854a5f912c@localhost.talkaboutsupport.com>,
> Karl Menger states that; "Entities must not be reduced to the point of > inadequacy." and "It is vain to do with fewer what requires more." [quoted text clipped - 4 lines] > > Ron S. ronju99 - 21 Oct 2007 23:54 GMT You may want to Google "Karl Menger and "The Law of Miserliness." Born 1902 and died 1985.
Ron S.
ronju99 - 22 Oct 2007 00:45 GMT You want heavy handiness. Occam's Razor is a principal that is often paraphrased as, All things being equal, the simplest solution often tends to be the right one. That is what you expounded. Anti-razors believe the theory is TOO extreme or rash and have put forward other principals such as Karl Mengers principal and another by Gottfried Liebniz that states, "The variety of beings should not be rashly diminished." How does this apply to our postings. You seem to be taking the simple approach to your decision making and disregarding other relevant issues that could make a profound difference in your decision making model that could effect your future outcome. I was only attempting to challenge your model. I now understand that it was folly on my part.
As far as giving you my opinion on active surveillance. It would be meaningless. Opinions are a dime a dozen. However, I made an attempt to give you many references from the best minds in the field for your study. This was done primarily before you had announced your decision.
Like I stated in an earlier post, once you join the club, we become brothers of sort. That's why I was handwringing as you call it.
You haven't got it yet and you may never get it but in spite of that here's hoping the best for you.
Ron S.
glassman - 21 Oct 2007 21:10 GMT > I was recently Dxiagnosed with Prostate Cancer. I will be 60 in > January. [quoted text clipped - 3 lines] > Stage -T1c > PSA-Doubling-22 months We all join in hoping for your success. Thanks for being our personal guinea pig. Let's hope it doesn't come down to a tougher surgery at 65, with a more aggressive cancer to deal with. Afterall isn't that the reason we have the surgery early? I had my beast removed 5 years ago at 53, and if I had the chance to do it over, I'd do it again in a heartbeat. Good luck and keep us posted Sy.
 Signature JK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com
Sy - 21 Oct 2007 22:14 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
I am absolutely astonished at some of the responses to my posting regarding "watchful waiting". Like this one-"Thanks for being our personal guinea pig". Wadda guy.
I really think people like yourself are projecting their own dis-ease regarding Active Surveillance. If you didn't have the stomach for it then maybe you had a major surgery you may not have required. And, your "beast" may be hiding somewhere too for all you know. I don't know your specific case and don't especially care.
Are you daring me to have a rad. prost., maybe? That's what it actually comes across as. How puerile can you get.
You mean I'm more of a man if I go that route to deal with the "beast"? How ridiculous that on a board concerned with things of such gravitas there are a few jerks like yourself making the kind of remarks which you made.
Sy
> > I was recently Dxiagnosed with Prostate Cancer. I will be 60 in > > January. [quoted text clipped - 10 lines] > I had the chance to do it over, I'd do it again in a heartbeat. Good luck > and keep us posted Sy. glassman - 22 Oct 2007 03:19 GMT > [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 3 lines] > personal guinea pig". Wadda guy. > Are you daring me to have a rad. prost., maybe? That's what it actually comes across as. How puerile can you get.
You mean I'm more of a man if I go that route to deal with the "beast"? How ridiculous that on a board concerned with things of such gravitas there are a few jerks like yourself making the kind of remarks which you made.
Sy
You are way overreacting, maybe based on others posts? I meant to say thanks for you testing the waters, and showing us all the ongoing results of your decision. Others here over the years have chosen alternative paths with my sincerest support. Your personal insults are uncalled for and shortsighted.
 Signature JK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com
Beverley - 21 Oct 2007 22:08 GMT There are valid reason to do some watchful waiting. For most men it won't hurt to spend a few weeks or even a month or two learning all they can about prostate cancer, deciding on a treatment, and locating a doctor with whom they feel comfortable.
Watchful waiting (active surveillance) will buy time if for some reason treatment needs to be postponed because of other health problems.
WW can be an excellent way to deal with PC if someone is "elderly" and the odds are greater that their life expectancy is less than the PC's. Of course elderly has taken on a whole new meaning lately, at least for me. The older I get the more I find "elderly" folks with more energy then I have and they are in very good health.
I have a friend whose husband is in the "watchful waiting" category and that is because ALL biopsies have come back negative. His PSA bounces around and is often temporarily lowered with a round of antibiotics. So yes, he's under "active surveillance" and waiting for the shoe to drop. He's waiting for a biopsy to come back positive and has been in this predicament for several years now.
But watchful waiting for a healthy man with a positive biopsy is nothing more than waiting for cancer to become advanced. Hedging bets that a heart attack, stroke, or a truck doing 75 MPH hits first. When caught early PC is very curable by a number of treatment options.
Yes, options. Pick your poison! Surgery is constantly improving and great strides have been made using radiation (IMRT, brachy, cyberknife). We are even seeing cryosurgery and some other new treatments surfacing. Nothing is perfect. They all have some side-effects. But the ultimate goal is to stop the PC. Life instead of a slow painful death.
Some men fear loss of erectile function. Right now, I know of no treatment that can 100% guarantee that there will not be any loss of EF. No man wants to lose his EF, but it can happen. How someone chooses to live without it is a different matter and there are options to help overcome ED.
PC is treatable and a normal healthy male should be treated. Bev
> I was recently Dxiagnosed with Prostate Cancer. I will be 60 in > January. [quoted text clipped - 29 lines] > > Sy Alex - 22 Oct 2007 08:12 GMT > There are valid reason to do some watchful waiting. For most men it won't > hurt to spend a few weeks or even a month or two learning all they can [quoted text clipped - 8 lines] > more than waiting for cancer to become advanced. Hedging bets that a heart > attack, stroke, or a truck doing 75 MPH hits first. What an uncomfortable position I find myself in -- disagreeing with Beverly, who has been a dear, supportive, informative and welcome member of this online community, and agreeing with Sy, who seems to seize any opportunity to behave like an ill-tempered boor.
Bev, active surveillance is not just for men who must postpone active treatment, or who are betting that they'll be hit by a bus before they die of prostate cancer.
It is also an option for men like myself who have low-grade disease and who have made an informed decision to defer surgery or radiation because they feel the risks of doing so are acceptable. (Note that I said "defer", not "reject".)
I was diagnosed a bit over two years ago, at 61, with a PSA of just over 6 and a Gleason of 6 (3+3), with under 10% of cancer in just two of 14 cores, confirmed by Johns Hopkins. It took two biopsies, and 26 needles, to find those cancer cells. After I did nothing but change my diet and add the usual supplements, my PSA declined a couple of points over the following year. I then went on Proscar, which halved the PSA again, to about 2.
I'm in the care of a medical group that specializes exclusively in prostate cancer, and my quarterly exams and extensive blood tests, plus the delightful DRE, help them make their BMW payments. Twice a year I get nice pictures of my prostate via color doppler ultrasound.
Right now I regard this as a reasonable strategy. If the PSA heads upward, or other tests (the ultrasounds, a follow-up biopsy, etc.) suggest that my cancer is getting feisty, I won't hesitate to get surgery. (I'm not a good candidate for radiation, because I have a ridiculously large prostate, the only above-average aspect of my male anatomy.)
Sy, I don't know if active surveillance makes sense for you. Others have outlined the risks, and have noted that your numbers would seem to make it a dicey choice. But hey, it's your prostate. Still, you might want to give some credence to the chorus of folks who have found your messages ill-tempered. As my father used to say, "If a guy tells you you're drunk, he may be insulting you. If three guys tell you you're drunk, lie down -- you're drunk!"
Alex
Sy - 22 Oct 2007 12:42 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
Alex,
There seems to be an inordinate amount of self-righteousness and badgering on this board that I have never seen anywhere else which masquerades as "concern" when it is mostly from a few people who believe themselves to be Prostate Oncologists with 25 or so years of experience and would have you under their "care" so to speak if you only let them. They probably have a sign which says "M.D." outside of their room at "the home".
Their is also this tendency to support one with "good luck on your treatment decision" and then go into a ghastly harangue about the "beast" lurking within and how it will decimate you as if I didn't already have thought about that. Some "support".
If you consider some of my replies "boorish" then you might want to read the postings which precipitated my "boorish" replies.
As you say yourself:
"I'm in the care of a medical group that specializes exclusively in prostate cancer, and my quarterly exams and extensive blood tests, plus the delightful DRE, help them make their BMW payments. Twice a year I get nice pictures of my prostate via color doppler ultrasound."
In other words despite, the fact that there is useful information to be had here are you going to follow the "medical advice" here or that of what your Medical Group as well as your own research suggests?
Sy
B.T.W., I like your email name and understand it. It 's actually very appropriate.
> > There are valid reason to do some watchful waiting. For most men it won't > > hurt to spend a few weeks or even a month or two learning all they can [quoted text clipped - 50 lines] > > Alex Sy - 22 Oct 2007 13:02 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
Beverly,
Thank you for sharing "The Truth" with ignorant boors like myself. It's greatly appreciated.
What you might want to add to your repository of "The Truth" are the recent studies from Japan and Switzerland about "Active Surveillance" .
Sy
> There are valid reason to do some watchful waiting. For most men it won't > hurt to spend a few weeks or even a month or two learning all they can about [quoted text clipped - 69 lines] > > > > Sy safire - 22 Oct 2007 13:27 GMT > Beverly, > [quoted text clipped - 3 lines] > What you might want to add to your repository of "The Truth" are the > recent studies from Japan and Switzerland about "Active Surveillance" . And please take a look at http://www.erspc.org/ and read publication #304 (Overdiagnosis and overtreatment of early detected prostate cancer).
>> But watchful waiting for a healthy man with a positive biopsy is nothing >> more than waiting for cancer to become advanced. Or waiting for it not to advance, as pca is, unlike other cancers, in most cases, slow-growing.
limey - 22 Oct 2007 19:56 GMT > [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 8 lines] > . > Sy What you don't realize is that Bev is only too aware of the vagaries of this disease.
It is obvious you have done a lot of reading at this early stage of your disease and have consulted with friends and others in the medical community. I feel, therefore, that you have no need for the obviously inexpert, unhelpful and uncaring opinions you have received from this newsgroup, so suggest you leave and take your attitude somewhere else, where your knowledge will be more valued.
Thank you - goodbye and good luck.
Dora (whose husband has very advanced Pca).
PM - 22 Oct 2007 21:08 GMT >SNIP
> What you don't realize is that Bev is only too aware of the vagaries of > this disease. [quoted text clipped - 10 lines] > > Dora (whose husband has very advanced Pca). ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
and that might also say "Dora who doesn't appear to have much understanding at all of what extreme stress can do to people".
I wonder if it might have occurred to you that this guy is struggling hard to come to terms with what he knows and that one of the functions of a *support* group is to give people space to get angry maybe, to lash out maybe, and to find an understanding by whatever means of what they are experiencing and have to live with - and maybe die with.
This is, by its title, a "support" group . . and just maybe this guy needs some support he gets from nowhere else - he could be single, alone facing PCa, and equally, we all know, just maybe, he could be a Troll . . but in my world there is room for Trolls. There is always the possibility the Troll staggers across something which is the equivalent in his/her world of a Damascene Conversion.
A support group can offer tolerance and understanding, sometimes gentle sometimes firm criticism, but emphatically not, in the case of a cancer support group, the way out of the door. That is deeply offensive in the context of what we are all too aware of here, Dora
PM
limey - 22 Oct 2007 22:37 GMT > and that might also say "Dora who doesn't appear to have much > understanding at all of what extreme stress can do to people". Forgive me, and I have no desire to prolong this, but I can assure you I have a very clear understanding of what extreme stress can do. My husband is going through that; in my own way, I am also as I try my best to support him. I have had cancer myself, so can identify with that stress.
I can understand that Sy is stressed. I was upset that he brushed aside so much help and advice, in such an abrupt way. Not the way to arrive in a newsgroup, where people are so supportive and concerned.
> I wonder if it might have occurred to you that this guy is struggling > hard to come to terms with what he knows and that one of the [quoted text clipped - 15 lines] > > PM Thank you for your comments. If I, too, have offended then I apologize. I'm not usually so truculent but when he was so sarcastic to Bev, in view of her recent loss it triggered my reaction.
Dora
Sy - 22 Oct 2007 22:54 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
In article
Hi PM,
Thanks very much for your kind words. I can assure you that I am not a "troller". There are tens of thousands of Newsgroups out there and for someone to pick one like this to get their jollies would be quite weird.
I admit to having been somewhat sarcastic with some posters but I have to say that some of the feedback I've gotten especially as it relates to the topic of "prostate cancer and the individual patient's personal treatment decisions" is truly remarkable to me in that it generates what really seems to be some type of hostility or intolerance masquerading as concern.
What I think happens in these boards is that there ensues (and I am finding that there is no end of puns in this entire context) a "pissing contest" :) so to speak, where certain people come to believe that they are actually medical gurus, Lasker or Nobel Prize winners and get very defensive when their "expertise" or point of view is either questioned or challenged.
What is most striking to me however is their reaction to a very personal, possibly life- changing decision which they have deigned to analyze and make negative pronouncements about. That is the part I find very offensive.
Regarding Dora's generous invitation for me to get lost, I simply see it as the type of myopia and intolerance you speak of in your posting
I want to thank you very much for your insightfulness and understanding as well as your courage in making your points.
Be ready for some shots from the crowd though!
Thanks,
Sy
<ZcOdnRDQ0PSvnoDanZ2dnUVZ8qSnnZ2d@bt.com>, PM <sixup@mailDELETESPAM.com> wrote:
> >SNIP > [quoted text clipped - 36 lines] > > PM glassman - 23 Oct 2007 02:38 GMT > [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 14 lines] > what really seems to be some type of hostility or intolerance > masquerading as concern. "Paranoia strikes deep in the heartland"
CSN&Y
 Signature JK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com
Sy - 23 Oct 2007 01:23 GMT Hi Dora,
While I do appreciate your invitation to leave, I will continue to "hang around" and continue to garner more information as well as detractors :)
Sy
> > [[ This message was both posted and mailed: see > > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 23 lines] > > Dora (whose husband has very advanced Pca). MAS - 22 Oct 2007 20:26 GMT I really do not want to get into a wetting contest, hence this is my last comment on the subject.
Age grouping of study that you refer to from Switzerland is 65 to 80. You simply do not fall into that age group. However, you fall into this age group on yet another study from Switzerland. (Remember the huidng principle of all physicians - Do not harm.):
ScienceDaily (Oct. 11, 2007) - A study from Switzerland suggests that men who have surgery for prostate cancer appear less likely to die of the disease within 10 years than men who choose other treatment options, especially if they are younger or have cancers with certain tumor cell characteristics, according to a report in Archives of Internal Medicine.
Prostate cancer treatments are still being debated because they have not yet been compared in a randomized trial, in which men would be randomly assigned to one treatment or another, according to background information in the article. "Therefore, treatment choice is strongly influenced by patient and physician personal preferences and experiences," the authors write.
Arnaud Merglen, M.D., of Geneva University, Switzerland, and colleagues used data from the Geneva Cancer Registry to assess all 844 patients diagnosed with localized (not yet spread) prostate cancer in Geneva between 1989 and 1998. Of those men, 158 received prostatectomy, or surgery to remove all or part of the prostate; 205 had radiation treatment (radiotherapy); 378 chose watchful waiting, which entails active follow-up and treatment if the disease progresses; 72 underwent hormone therapy; and 31 had another type of therapy.
The average follow-up was 6.7 years (range zero to 15.8 years), and 47 patients (5.6 percent) left Geneva and the study before the study concluded.
"At 10 years, patients treated with radiotherapy or watchful waiting had a significantly increased risk of death from prostate cancer compared with patients who underwent prostatectomy," the authors write. Ten-year survival rates from prostate cancer were 83 percent for prostatectomy, 75 percent for radiotherapy, 72 percent for watchful waiting, 41 percent for hormone therapy and 71 percent for other treatment. "The increased mortality associated with radiotherapy and watchful waiting was primarily observed in patients younger than 70 years and in patients with poorly differentiated tumors," or tumors that have certain cellular characteristics and are more likely to spread aggressively.
"Until clinical trials provide conclusive evidence, physicians and patients should be informed of these results and their limitations," the authors conclude.
Reference: Arch Intern Med. 2007;167(18):1944-1950.
This study was supported in part by a PROSPER (Program for Social Medicine, Preventive and Epidemiological Research) grant from the Swiss National Science Foundation.
Adapted from materials provided by JAMA and Archives Journals.
A STUDY IS JUST A STUDY. ONE CAN FIND A STUDY TO SUPPORT WHATEVER POSITION ONE WANTS TO TAKE OR BETTER YET, FEEL COMFORTABLE WITH. This group takes a position that whatever direction one takes is his personal choice and we never find fault with the decision. This group also gives interested parties the benefit of their decision and with a wide assortment of treatment taken it is only food for fodder.
I am reminder each quarter, it's your choice; Eligard or a rising PSA..........
GD
> [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 97 lines] >> > >> > Sy Sy - 22 Oct 2007 22:54 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
MAS,
You are an intolerant jerk and busybody, and you have the totally self -unreflective hubris to say:
"This group takes a position that whatever direction one takes is his personal choice and we never find fault with the decision" and then follows with some self serving harangue about the Swiss study and that everyone can find a "study" to support their particular bias. Very perceptive Einstein and I suppose that you yourself are immune to any "biases"?
Several folks here have been "finding fault with the decision" for about the last week. It's incredible to me.
And in a topic where there are endless puns to be made, I would like to end with "Up yours".
Sy
> I really do not want to get into a wetting contest, hence this is my last > comment on the subject. [quoted text clipped - 164 lines] > >> > > >> > Sy gvk2six@yahoo.com - 23 Oct 2007 00:33 GMT > [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] > > > >> > Not only will I keep an eye on it I will keep all 4 of my eyes on it. > > > >> > Sy Well I think Sy's choice is a good choice. Sure, you can find studies that suggest he loses a few percentage points at 10 years, but whats the value possibly gained during those 10 years? Quality of life and a very real chance to beat the slightly better odds received from surgery.
Personal choice is what its all about. Fully informed, eyes wide open choices. Go for it! My dad survived 25 years (until age 88) after doing EBRT and DES at age 63-64. One of my closest friends mid fifties had Da Vinci 6 months ago. Me, I'm trying to keep my psa under 3.0 via all means possible. But if and when I'm faced with Sy's choice I'm certainly gonna give "active surveillance" serious consideration. As a pre-diagnosis individual I've noticed that many people have a lot invested in the path they've chosen because there is no going back. So we find studies that back up our good decisions.
Some years ago on a mountain biking forum I brought up the fact that I never wore gloves during the hot summer days, prefering dryer cooler hands to the risk of falling and chewing up my skin. Instead I put cut cotton ribbed sock tops around my grips attached firmly with thick rubber bands. I explained it worked wonderful and I only suffered injury once or twice a year. I thought this was well worth the risk for the cool feeling without gloves I enjoyed on all my other rides. Even though I explained the risk/reward ratio, you'd have thought I was suggesting riding without tires or handlebars according to the onslaught I got in multiple posts. People suggested I was crazy and reckless even if I accepted the risk. Well I've been riding for 6 years without gloves on hot days and enjoying cool hands. So far its been a worthwhile risk.
I think Sy's extra percentage risk acceptance is rather minor in terms of percentage outcomes I've seen reported. Certainly not black and white.
You know, along those lines, in some other forums, I've seen so many people discuss the differences between various treatments of say, 75% or 85% at ten years and then dismiss so many lifestyle/dietary changes that might offer a portion of that difference and have zero downside. I don't understand that, nor do I understand so many men who don't even address risk reduction via diet and lifestyle until being diagnosed in their mid 50s or 60s. Granted I've had the benefit of seeing PCa in my own family for decades, but most of the lifestyle changes I've adopted are equally or more beneficial for cardiovascular disease and yet done by so few.
Ok.....Sy, I hope you'll keep us informed of your progress. I'm also curious about how many data points you had over what time period to arrive at your 22 month doubling figure.
I mention this because as i said earlier, I stopped doing PSAs for a while and went from .8 to 2.9 over 5.3 years. About .4 per year if the incline was steady, which it probably wasn't. Still I waited another 6 months and then much to my relief I got a 1.6 So perhaps my 2.9 was a blip up via something. I have some theories which will be tested on my next test in December. Hopefully 1.6 is closer to my real number. Not to get off the subject at hand too far, but I've been reading quite a bit about asymptomatic prostatitis and the correlation to higher psa test results. And with me putting in 100 plus miles on a bicycle seat every week, it has occurred to me cycling could lead to long term asymptomatic prostatitis even if one takes 2 or 3 days off prior to testing. For my 1.6 test, I was on vacation without cycling for several weeks. But I also had changed my diet and and supplements during the 6 months between tests. My study of one continues at a snails pace. The buggers are in there (fairly sure)... they may be (combined) Gleason 3, 4, 5 or even 6 at some location, but right now I don't want to know. My own version of "active surveillance" Now hand me my pomegranate juice please :-)
Sy - 23 Oct 2007 04:15 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
> > [[ This message was both posted and mailed: see > > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 8 lines] > Quality of life and a very real chance to beat the slightly better > odds received from surgery.
> Personal choice is what its all about. Fully informed, eyes wide open > choices. Go for it! You very clearly get the point.
> My dad survived 25 years (until age 88) after doing EBRT and DES at > age 63-64. One of my closest friends mid fifties had Da Vinci 6 [quoted text clipped - 5 lines] > invested in the path they've chosen because there is no going back. > So we find studies that back up our good decisions. If your clinical and personal criteria warrant it then give Active Surveillance a try and if that's your decision don't let the flak you'll probably get here (as you said "that many people have a lot invested in the path they've chosen") disabuse you of the idea.
You'll probably get your share of disingenuous "support" accompanied by photos of men with Stage IV M ll disease on their death beds in agony or saggital sections of their "beast" crawling through and out their guts like the creature in "Alien". Ah yes, nothing like "support".
> Some years ago on a mountain biking forum I brought up the fact that I > never wore gloves during the hot summer days, prefering dryer cooler [quoted text clipped - 50 lines] > some location, but right now I don't want to know. My own version of > "active surveillance" Now hand me my pomegranate juice please :-) chasjac too - 27 Oct 2007 12:21 GMT Hello, Sy:
My, what a lively thread. I am sorry I missed it as it was happening, and I hope I can avoid stirring up any more polemics.
It just seems to me that active surveillance is an incomplete strategy. What you've really done is to agree with your docs to postpone a treatment decision until later on. That's your choice, of course. Indeed, when men first come to this group after learning about their PCa, people here often counsel them to take their time and research their options. That's what I heard from the folks here when I first cam a little over a year ago, and I have in turn said it myself since, both here and elsewhere.
What I would think would be a more complete strategy that involves active surveillance is this: (1) Agree with your docs to do the PSA test frequently; my understanding is that you're doing this every 3 months. (2) Also establish some threshold values: if your PSA or your PSA velocity gets to some number, or if you become symptomatic, then you will abandon the surveillance and get aggressive. (3) Why not also consider now what that more aggressive treatment might be?
And I do not mean to stir up a divisive thread; I just didn't see this point in the rest of the thread and thought it was worth offering.
--charlie
 Signature 6/2006 PSA 5.2, DRE suspicious 7/2006 Biopsy: 2 of 10 positive, Gleason 7(3+4) 11/2006 LRP: Clear margins PSA < 0.01 on 1/2007, 3/2007, 6/2007, 9/2007 so far, so good ...
Alex - 27 Oct 2007 22:31 GMT > Hello, Sy: > [quoted text clipped - 27 lines] > > --charlie Charlie, what you have described in the latter portion of your message is in fact "active surveillance," as practiced by responsible PCa specialists. So AS is far from "an incomplete strategy."
Alex
chasjac too - 27 Oct 2007 23:18 GMT Hello, Alex:
Of course. I was just hoping that Sy would ponder it a bit -- especially point #3.
--charlie
 Signature 6/2006 PSA 5.2, DRE suspicious 7/2006 Biopsy: 2 of 10 positive, Gleason 7(3+4) 11/2006 LRP: Clear margins PSA < 0.01 on 1/2007, 3/2007, 6/2007, 9/2007 so far, so good ...
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