Medical Forum / Diseases and Disorders / Prostate Cancer / September 2006
sorting out information
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chasjac - 29 Aug 2006 02:30 GMT This is my first post, too, and like Kevin, I really wish I didn't need this help -- but I imagine many of you felt this way when you first posted.
I was diagnosed about a week ago with prostate cancer. I have a 1.2 cm tumor in my left apex with a Gleason score of 7. My PSA is 5.2. I am otherwise healthy, 51 years old, slightly overweight with a fairly good diet. I am not aware of any history of this in my family. I have no symptoms at the moment that coiuld not be attributed to normal aging.
My physician and the urologist to which he referred me recommend surgery, while an oncologist recommends radiation seeds.
In order to make my decision, I am hoping to find out the following: how often do men who get a prostate tumor get another one years later?
I am concerned that if I have this tumor treated with radiation seeds, I might develop another tumor in a different part of my prostate in a decade or so, and my understanding is that my treatment options are more limited after I've had seeds once.
It seems that the percentages that I am hearing from the doctors regarding the success rates are 10-year survival rates, and I'm wondering if anything is known over a longer time period.
Thanks,
Charlie
Steve Jordan - 29 Aug 2006 03:23 GMT On August 28, Charlie wrote:
> I was diagnosed about a week ago with prostate cancer. I have a 1.2 cm > tumor in my left apex with a Gleason score of 7. My PSA is 5.2. I am [quoted text clipped - 5 lines] > surgery, while an oncologist recommends radiation seeds. > Of course they do.
> In order to make my decision, I am hoping to find out the following: > how often do men who get a prostate tumor get another one years later? > There is no way to know. If the PCa (prostate cancer) recurs it is considered a, well, recurrence, not necessarily a completely new tumor.
> I am concerned that if I have this tumor treated with radiation seeds, > I might develop another tumor in a different part of my prostate in a > decade or so, and my understanding is that my treatment options are > more limited after I've had seeds once. > The "seeds" would be emplaced throughout the gland. The rad onc should brief the patient on this. If (s)he fails to do so, shop for a competent rad onc.
> It seems that the percentages that I am hearing from the doctors > regarding the success rates are 10-year survival rates, and I'm > wondering if anything is known over a longer time period. > Not that I know of. But periodic followup tests are prudent in order to determine whether the PCa has recurred.This would likely continue until something else causes the patient to drop off the twig.
But it is unwise to rely upon the well-intentioned advice of amateurs such as we on this NG. For authoritative information, go to the website of the Prostate Cancer Research Institute at: http://prostate-cancer.org/index.html
We can provide anecdotal war stories that might guide one to lines of inquiry, but they are unreliable when one is seeking advice on how to save one's life.
Regards,
Steve J
"If you know the enemy and know yourself, you need not fear the result of a hundred battles. If you know yourself but not the enemy, for every victory gained you will also suffer a defeat. If you know neither the enemy nor yourself, you will succumb in every battle." -- Sun Tzu, "The Art of War"
Beverley - 29 Aug 2006 04:23 GMT Hi Charlie, Sorry to hear you have joined this club.
If the seeds are properly planted you will have no prostate left when they have finished working on it. That Gleason 7 might make you a poor candidate for brachytherapy (seeds) - seems to depend on the group doing it. The Massey Cancer Center, Medical College of Virginia will not do it with a Gleason 7. You might want to check someplace such as RCOG. http://www.rcog.com/home.htm
Brachytherapy has been around for a long time but it is only in the last 15 years or so that it has been widely used. (They finally got the technique down pat.) Our doctor at Massey/MCV has been doing them since 1989 and has not had a single failure. His stats are not unusual but they have very rigid guidelines as to who they select for seeding.
Hubby seeded May 2002 after 5 weeks EBRT on IMRT. He's 0.01 - that is considered undetectable by his radiation-oncologist. He was 56 at the time with a Gleason 6 (3+3), PSA 4.9, fPSA 8%.
If you want to know more just email me. Bev
> This is my first post, too, and like Kevin, I really wish I didn't need > this help -- but I imagine many of you felt this way when you first [quoted text clipped - 24 lines] > > Charlie Leonard Evens - 29 Aug 2006 13:36 GMT > This is my first post, too, and like Kevin, I really wish I didn't need > this help -- but I imagine many of you felt this way when you first [quoted text clipped - 8 lines] > My physician and the urologist to which he referred me recommend > surgery, while an oncologist recommends radiation seeds. I suggest that you see what Peter Scardino says in "The Prostate Book'. He is a world class prostate cancer research scientist, having written hundreds of papers on the subject. It is true that he is a surgeon and may possibly be biased towards surgery, but it seems to me his treatment in the book is well balanced.
He seems to think that a Gleason 7 tumor should not ordinarily be treated with seeds, and he gives reasons why. He suggests using external beam radiation or surgery in such cases on the basis that either gives a better chance for long term cancer control. I believe there have been some recent studies supporting that conclusion, but I can't quote them right now.
He does make one other point. If you have access only to a mediocre surgeon but to a first class brachytherapist, then it might sense to choose the latter. You need to ask each for figures from his practice on long term, much longer than 10 years in your case, cancer control for the recommended procedure for men with your specific diagnosis.
> In order to make my decision, I am hoping to find out the following: > how often do men who get a prostate tumor get another one years later? I don't know the answer to your question. But one thing to keep in mind is that the exact way the procedure is done will determine how much prostate tissue is left behind. Some brachytherapists claim to be able to drive the PSA levels down to undetectable levels, but others are satisfied with a higher nadir or lowest point.
> I am concerned that if I have this tumor treated with radiation seeds, > I might develop another tumor in a different part of my prostate in a [quoted text clipped - 7 lines] > > Charlie callalily - 29 Aug 2006 15:19 GMT > > This is my first post, too, and like Kevin, I really wish I didn't need > > this help -- but I imagine many of you felt this way when you first [quoted text clipped - 48 lines] > > > > Charlie You should consider scheduling an appt. with a surgeon immed. just in case. There is one Dr. Guilloneau at Sloan-Kettering who has a six-month waiting list (however, he only takes up to a gleason-6). Also, Dr. Scardino is a wise man -- he is probably right about having RP for a gleason 7.
P.S. Is this the etiquettely correct place to post a reply? i don't understand "in line" posting. (Sorry, I'm a non-technically inclined woman).
Leah
Steve Jordan - 29 Aug 2006 19:20 GMT On August 28, Leah wrote, in pertinent part:
After her reply to Leonard Evans
> P.S. Is this the etiquettely correct place to post a reply? i don't > understand "in line" posting. (Sorry, I'm a non-technically inclined > woman). > Yes.
But when posting in-line it is thoughtful to snip irrelevant text from the message(s) to which one is replying. Saves wading through such text, scrolling and scrolling.
In-line posting is simply carrying on correspondence is a logical manner, post - reply - post, etc., just as in a conversation.
And BTW, I am not the one who raised the issue of posting styles.
Regards,
Steve J
NICK - 29 Aug 2006 21:41 GMT > But when posting in-line it is thoughtful to snip irrelevant text > from the message(s) to which one is replying. That was the rule in the old BBS days, long before there was an internet. NEVER quote more than your reply.
It a total lack of courtesy and common sense (something a lot of people don't have today) to quote 100 lines and offer a moronistic one-line reply. Plain laziness.
> Saves wading through such text, scrolling and scrolling. For people with a dial-up connection and no local number for their ISP, it also saves long distance charges on phone bills.
Are there anyl countries that have no "local" calls? Where ALL calls are billed by the minute?
Steve Jordan - 29 Aug 2006 22:18 GMT On August 29, NICK inquired:
> Are there anyl countries that have no "local" calls? Where > ALL calls are billed by the minute? > Dunno about calls, but I remember that the Brits have to pay their ISPs by the minute.
And IMO Nick is quite correct about widespread failure of courtesy. It's fascinating to note that, when criticized, many of the offenders (both top-posters and discourteous in-line posters) become quite defensive -- and also offensive.
I've seen and participated in other NGs, as well as chats and forums (fora). Almost but not quite invariably, postings are in-line. On chats and fora, there is no choice. Haven't noticed the sky falling...
Regards,
Steve J
Steve Kramer - 02 Sep 2006 11:45 GMT > That was the rule in the old BBS days, long before there > was an internet. NEVER quote more than your reply. 1st I heard of this one. Oops! I'm sorry.
Peter Headland - 31 Aug 2006 19:59 GMT > P.S. Is this the etiquettely correct place to post a reply? i don't > understand "in line" posting. (Sorry, I'm a non-technically inclined > woman). As I said elsewhere, it's not so much "where" as "how much". In this case, you probably didn't need to quote anything at all (just use your mouse to select all the quoted lines and delete them before typing your reply). If you did want to give a little context, you could simply have qoted this much:
chasjac wrote:
> My physician and the urologist to which he referred me recommend > surgery, while an oncologist recommends radiation seeds. One final note: before clicking on "reply", make sure you select the specific post to which you are replying. You replied to Leonard Evens' post; ideally, you should have replied to the original post in the thread.
 Signature Peter Headland
callalily - 29 Aug 2006 15:14 GMT > This is my first post, too, and like Kevin, I really wish I didn't need > this help -- but I imagine many of you felt this way when you first [quoted text clipped - 24 lines] > > Charlie It would be wise to set up an appt for surgery anyway. There is one Dr. Guilloneau at Sloan-Kettering who has a six-month waiting list.
P.S. I don't understand in-line posting v. other. If you want your post to be the last in the thread and viewable by the entire group where exactly should you write it. We women are not that technically inclined.
Leah
NICK - 31 Aug 2006 06:12 GMT Leah wrote:
> P.S. I don't understand in-line posting v. other. If you want your > post to be the last in the thread and viewable by the entire group > where exactly should you write it. You did fine, other than quoting the ENTIRE prior message. <g> Rules of courtesy state "add 3 lines for every 1 you quote." That's not always possible, but a good guide. Otherwise people seeing longgggggggg quotes figure the write is either too lazy or too inconsiderate of others (or both).
I.P. Freely - 31 Aug 2006 18:58 GMT > Leah wrote: > >> P.S. I don't understand in-line posting v. other. If you want your >> post to be the last in the thread and viewable by the entire group >> where exactly should you write it. There's no way to guarantee one's post will be at the end of the THREAD. We're talking about placing one's comments beneath (bottom posting), before (top posting), or interspersed with (in-line posting) the quoted portion of the post we're responding to.
I.P.
Alex - 31 Aug 2006 22:27 GMT >> Leah wrote: >> [quoted text clipped - 8 lines] > > I.P. Since I (accidentally) triggered this thread about netiquette and top- or bottom-posting, I think it's incumbent on me to put the issue to rest. So here goes: The rule is, you must bottom-post to participate in this newsgroup. If you don't, you won't be allowed to have prostate cancer.
Alex
JerryW - 31 Aug 2006 22:40 GMT Aha! Another Newsgroup Nazi! (Please note the top-post)
 Signature JerryW
> The rule is, you must bottom-post to participate in this newsgroup. If you > don't, you won't be allowed to have prostate cancer. > > Alex NICK - 01 Sep 2006 00:22 GMT > Aha! Another Newsgroup Nazi! (Please note the top-post) PING to the trash can for the lazy, inconsiderate, rude poster.
NICK - 01 Sep 2006 00:22 GMT > Aha! Another Newsgroup Nazi! (Please note the top-post) PING to the trash can for the lazy, inconsiderate, rude poster.
I.P. Freely - 01 Sep 2006 02:01 GMT BUT AT LEAST JERRY DIDN'T POST IT TWICE . . . he shouted. ;-)
>> Aha! Another Newsgroup Nazi! (Please note the top-post) > > PING to the trash can for the lazy, inconsiderate, rude poster. Steve Kramer - 02 Sep 2006 12:02 GMT >> Aha! Another Newsgroup Nazi! (Please note the top-post) > > PING to the trash can for the lazy, inconsiderate, rude poster. Brilliant! Catch prostate cancer. Go to a prostate cancer support group. Then, start dwibbing people based on where and how they provide you that support.
Here's another rule by which one might live. When you make an a.s out of yourself, apologize. Preferably as a top-post, but we'll accept a bottom-post.
Elliott Reinhardt - 03 Sep 2006 02:57 GMT Sir, that would be "plonk", not "ping"... "ping" is a wake-up call ;-)
> PING to the trash can for the lazy, inconsiderate, rude poster. I.P. Freely - 31 Aug 2006 23:18 GMT DAMN! To think I went through surgery unnecessarily!
I.P.
> you must bottom-post to participate in this newsgroup. > If you don't, you won't be allowed to have prostate cancer. Steve Jordan - 31 Aug 2006 23:50 GMT > Since I (accidentally) triggered this thread about netiquette and top- or > bottom-posting, I think it's incumbent on me to put the issue to rest. > So here goes: The rule is, you must bottom-post to participate in this > newsgroup. If you don't, you won't be allowed to have prostate cancer. > Despite snide remarks from certain folks, this works for me.
Except, dammit, it's too late :-(
I warned Alex about what would happen when certain cherished notions were called into question. Even to being accused of Nazism.
Regards,
Steve J
"Everyone is in favor of free speech. Hardly a day passes without its being extolled, but some people's idea of it is that they are free to say what they like, but if anyone says anything back, *that* is an outrage." --Sir Winston L. S. Churchill
Beverley - 01 Sep 2006 04:03 GMT I promise I will never have prostate cancer so I get to top post! Bev (ROTFL)
"Alex" <tuchasoffentisch@_NO_SPAM_gmail.com> wrote in message
<SNIP>>
> Since I (accidentally) triggered this thread about netiquette and top- or > bottom-posting, I think it's incumbent on me to put the issue to rest. > So here goes: The rule is, you must bottom-post to participate in this > newsgroup. If you don't, you won't be allowed to have prostate cancer. > > Alex Steve Kramer - 02 Sep 2006 11:56 GMT > P.S. I don't understand in-line posting v. other. If you want your > post to be the last in the thread and viewable by the entire group > where exactly should you write it. We women are not that technically > inclined. > > Leah The long and short of it, Leah, is almost none of us give a rat's behind how people in a cancer support group post their questions and support.
Alan Meyer - 29 Aug 2006 21:38 GMT > ... > In order to make my decision, I am hoping to find out the following: [quoted text clipped - 9 lines] > wondering if anything is known over a longer time period. > ... Unfortunately, the experts seem to disagree about the answers to your questions. I am not an expert myself but, rest assured, even if I was, you could find other experts that would disagree with me.
Everyone seems to agree that surgery works if it's properly done by a very experienced surgeon, and if the cancer has not yet spread beyond the reach of the surgeon's scalpel.
Many people believe that radiation works equally well, if properly performed by a very experienced radiation oncologist and if the cancer has not yet spread beyond the treatment area (which can include the region a little outside the prostate itself.)
However some people believe that radiation does not work, or is not proven for long term suppression of cancer, and should not be used by men as young as yourself.
My rad onc told me 2.5 years ago that 15 year results were coming in and that radiation is holding up well. But longer term results are not yet available.
Radiation techniques have changed pretty dramatically in the last 10-15 years. Doses have gone up, beam aiming has become more precise, and the ability to work around sensitive structures has improved. So the data from 15 and 20 years ago is not representative of what can now be achieved. That further complicates the problem of trying to evaluate the long term effectiveness of any of the current radiation techniques. There are also new surgical and non-surgical techniques for which long term data are not yet available.
Unfortunately, although you are not an expert on prostate cancer and have no previous experience with it, you are now forced to make your own judgement about which experts to believe. We have all been there and done that, with each of us coming to his own conclusions.
I personally chose radiation for a Gleason 7 (4+3) tumor with PSA of 8.7. However two different radiation oncologists that I consulted told me (and my reading appeared to confirm) that brachytherapy alone (without external beam radiation) is less effective than either surgery or other radiation techniques for "intermediate risk" cancers - which includes all cancers with Gleason 7. I was 57 at the time.
I had two doses of "high-dose rate" brachytherapy plus 25 doses of external beam. Two and a half years later (knocking on wood), my cancer seems not yet to have recurred.
Whatever you do, I am convinced that experience counts. Get a doctor, either a surgeon or a rad onc, who does lots and lots of prostate cancer treatment, and whom you judge to be a careful and competent person. I believe that you can improve your odds of success more by choosing the right person than the right treatment modality (at least between surgery and external beam or external beam plus seeds modalities.)
Best of luck.
Alan
Steve Jordan - 29 Aug 2006 22:36 GMT On August 29, the resolutely on-topic Alan Meyer ;-) replied to Charlie:
(snip good advice)
> Whatever you do, I am convinced that experience counts. Get > a doctor, either a surgeon or a rad onc, who does lots and lots [quoted text clipped - 4 lines] > external beam or external beam plus seeds modalities.) > One way Charlie can help himself in selection of a medic is to attend meetings of a local UsToo! chapter. There is much excellent info to be had on a face-to-face basis.
As the sometimes witty Stephen Strum puts it:
"Never choose an Institution -- if so, you will be labeled as having an 'edifice complex.' Choose the doc, not the building." (See, "Oedipus Rex" by Sophocles).
UsToo! chapter listings can be found on the website http://www.ustoo.com/
Regards,
Steve J
Peter Headland - 01 Sep 2006 23:30 GMT > Two and a half years later (knocking on wood) Proof that RT did not cause ED in you? ;-)
 Signature Peter Headland
DrYew.com - 30 Aug 2006 05:30 GMT Hi Charlie, Few questions.. how do you know it's 1.2 cm? Can it be felt on rectal exam? or was it "seen" on ultrasound (rather unreliable IMO)? Is it 3+4 or 4+3 Regardless, any 7 is a significant cancer, especially in a 51yo that can be expected to most likely harm you early in your lifetime. I'd opt for definitive local therapy.. which kills the cancer. That's radiation or surgery.
For both, make sure you go to someone who does a high-volume of seeds or surgery. I'm biased, but I'm concerned about seeds in higher grade cancers, and the growing trend towards "spackling" with supplemental beam. Also,
consider that prostate cancer is starting to evolve much like breast with multi- modal therapies. As a front-line treatment, radiation failures will typically end up on hormones/chemo. Few will even suggest surgery to you following radiation, due to radiation-effects on tissues and poor healing. Almost all men who undergo "salvage" prostatectomy surgery following radiation are totally incontinent and impotent. Conversely, assuming you regain continence and some erectile function after prostatectomy, if your PSA recurs and suggests local residual cancer, adjuvant external beam is fairly well tolerated with preservation of continence and, to varying degrees, potency.
There's a lot to think about and learn. Given your young age and health, I'd advise an aggressive approach. Best wishes. === http://www.DrYew.com http://www.SanDiegoRoboticProstatectomy.com *IMPORTANT* Any comments by me are for general informational purposes only, and should never be used to diagnose or recommend treatments for any condition without face-to-face consultation with a qualified health-care provider. Thank you. ===
Steve Kramer - 02 Sep 2006 11:46 GMT > This is my first post, too, and like Kevin, I really wish I didn't need > this help -- but I imagine many of you felt this way when you first > posted. More like ALL of us, Charlie.
> My physician and the urologist to which he referred me recommend > surgery, while an oncologist recommends radiation seeds. > > In order to make my decision, I am hoping to find out the following: > how often do men who get a prostate tumor get another one years later? You're still a might young for radiation treatment. However, studies have shown that there is no appreciable difference between surgery and radiation as far as the cancer is concerned. You seem to have a pretty good chance at a cure either way. Most prostate cancer patients would prefer a Gleason 6 and a PSA of 4 (or better), but you're close on both counts.
As far as our experiences, I could probably give you a statistical analysis of 600+ that have stopped by here in the last few years, but check out "Partin Tables" in prostate books or on the web. You'll need to know if your Gleason of 7 is represented as 3+4=7 or 4+3=7. You'll also have to have your Stage. Your doc should have told you these. And, let us know, please.
> I am concerned that if I have this tumor treated with radiation seeds, > I might develop another tumor in a different part of my prostate in a > decade or so, and my understanding is that my treatment options are > more limited after I've had seeds once. That is the problem with seeds or other radiation. A man of 51 that is cured of PCa through radiation has to worry about becoming a man of 71 with serious side effects from radiation (cancer, tubes and bags handling your waste function(s), etc.). Of course, there are side effects of surgery that effect the man at 51 (temporary incontinence, temporary impotence, etc.).
There is no good way to get through this. But, you really need to research it. Dr. Patrick Walsh's Guide to Surviving Prostate Cancer and Dr. Peter Scardino's Prostate Book are two of the best. Websites include www.phoenix5.org. There is only one absolute in this disease. You must research, research and then research and THEN make YOUR decision.
> It seems that the percentages that I am hearing from the doctors > regarding the success rates are 10-year survival rates, and I'm > wondering if anything is known over a longer time period. The best treatments have come about in the late 1990s. It's tough getting 15-year and 20-year results.
 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
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