As I have been looking around this group and elsewhere for more analysis for dealing with my recent diagnosis, I have been struck by Chodaks arguments about the testing that comes typically after a positive biopsy. He argues that the bone scan and pelvic CAT scan for lymph node spread are not good tests. This hit a nerve with me because I have a series of these tests scheduled.
At least part of Chodak's argument is that radiology / nuclear medicine testing is not as reliable as the predictive power of Gleason scoring and staging, and that it can lead to bad decisions. This is an argument he develops against MRI / Ultrasound where is it easy to misjudge whether or not a cancer has spread beyond the capsule.
In the case of a bone scan, he indicates that that men with PSAs of less than 20 show spread to the bones in only 0.3% of cases and that in 13% of cases, the bone scan shows abnormalities that will require further testing in order to determine the real cause. These include CAT scans, X-Rays and MRIs and can even lead to bone biopsies.
In the case of the CAT scans, he indicates that the test is really only helpful in the case of a cancer recurrence because it also lacks the sensitivity to determine if abnormalities are due to cancer. According to him, in early diagnosis, what one needs to know about are small points of spread that would be impossible to see without surgery. He points out that the stage of cancers at detection is typically T2 or T1 and that at that stage the incidence of spread is very low.
After watching this I am postponing my bone scan and cat scans. I am going to check with another practice here in town for a second perspective, and I am very interested in the opinions here.
I know that Chodak is not in favor of systematic screening of men, but this seems to be a consequence of his scientific principles that until there is clinical proof of the value of a technique or procedure, one can only act based on theory and conviction. I have been propelled into acting on my cancer by a host of medical people that do not share his point of view on screening and I guess I am glad of it. But now that I am embarked on this process, I am trying to take seriously what one of the members said: You are in charge.
Thanks again.
Stage T1a (one small point one sample in 12 samples: left apex) Gleason 3+3 PSA 11
I guess there are several factors that I see here that argue for maintaining the tests: 1) My PSA is not what one would call low. 2) These tests will potentially serve as baselines for future tests. 3) Most doctors expect them and probably will not be happy until they have them.
artfer...@gmail.com wrote: > I guess there are several factors that I see here that argue for > maintaining the tests: > 1) My PSA is not what one would call low. > 2) These tests will potentially serve as baselines for future tests. > 3) Most doctors expect them and probably will not be happy until > they have them.
Plus ... why not?
A couple of scans will do no medical harm and may provide useful information, including anything from a met precluding local treatment to clear scans which may help you decide on local treatment. I'd sure hate to have or refuse something as dramatic as RP or RT based on statistics, especially if a scan could definitively rule them out (talk about good news/bad news!)
But emerging studies indicate that those initial staging numbers Chodak is talking about may indeed prognosticate our futures more accurately than do PSA dynamics. I hope to learn more about those studies when I visit my onc late this month; they were incomplete but promising last time we talked.
This response is not specific to the instant situation but general: cost. Worthless tests cost millions if not hundreds of millions a year in the U.S. And then we complain about health ins. premiums. We can't have our cake and eat it too. Cost did enter into my decision to forego SRT even though it was not I who would be [directly] paying for it.
That said, I would not be surprised if artfer's docs insist on the scans, at least in part due to defensive medicine.
> I guess there are several factors that I see here that argue for > maintaining the tests: > 1) My PSA is not what one would call low. > 2) These tests will potentially serve as baselines for future tests. > 3) Most doctors expect them and probably will not be happy until > they have them.
In addition to Bill's point on "the cost to us all", some tests can affect our well being. Some doctors are either unaware of these "side effects" or choose not to discuss them. For example, it has been reported by the National Academy of Sciences that "one CT scan exposes a patient to the lower range of radiation received by some Nagasaki bombing survivors. Up to one in a thousand patients will develop cancer from this exposure. Sixty million CT scans a year will thus cause cancer in thousands of people. Yet most consent forms are silent about this." Yesterday, in a thread on Fosamax we were discussing how the medical establishment is getting word out on cancer causing side effect that may affect one in a million people. Apparently, the risk with CT scans is 3 orders of magnitude greater, but the same medical establishment has been pretty quiet on this issue...ron
On Jan 2, 10:17 am, zeros...@midsouth.rr.com wrote:
> "Plus ... why not?"
> This response is not specific to the instant situation but general: > cost. Worthless tests cost millions if not hundreds of millions a year > in the U.S. And then we complain about health ins. premiums. We can't > have our cake and eat it too. Cost did enter into my decision to > forego SRT even though it was not I who would be [directly] paying for > it.
> Bill/Memphis
"Cost did enter into my decision to forego SRT even though it was not I who would be [directly] paying for it. "
>I guess there are several factors that I see here that argue for > maintaining the tests: > 1) My PSA is not what one would call low. > 2) These tests will potentially serve as baselines for future tests. > 3) Most doctors expect them and probably will not be happy until > they have them.
I'm a little suspicious of those expensive tests, but it seems fairly universal that the doctors want them. Conversely, I never heard of Chodak and don't know his qualifications.
I'd go with the tests.
-- 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 undetectable since, < 0.04 on 10/09/08 Illegitimati non carborundum
> This response is not specific to the instant situation but general: > cost. Worthless tests cost millions if not hundreds of millions a year > in the U.S. And then we complain about health ins. premiums. We can't > have our cake and eat it too. Cost did enter into my decision to > forego SRT even though it was not I who would be [directly] paying for > it.
I agree with that ratipnale. I've even questioned PSA assays ($20 a pop, once the blood is drawn anyway for other reasons) just a couple of months apart for that reason, and canceled a CT when the idiot doctor couldn't tell me what useful information he'd learn from it.
alv...@gmail.com wrote: > "Cost did enter into my decision to > forego SRT even though it was not I who would be [directly] paying for > it. "
I would not let cost deter me from potentially life-saving treatment. Since I've earned and/or paid cash for my insurance, I'm not donating my life to an insurance pool. If that were my paradigm, I'd just stop paying for my commercial insurance, stop bothering the VA, give all my money and home and possessions to charity, and lie back and let death overtake me in some alley.
On 1/2/09 8:55 PM, in article gjlrga$or...@news.motzarella.org, "Steve
Kramer" <skra...@cinci.rr.com> wrote: > I'm a little suspicious of those expensive tests, but it seems fairly > universal that the doctors want them.
Bone scans are not recommended unless PSA > 20 ng/mL or Gleason >8 or staged T3/T4. Art doesn't qualify as his PSA was 11 and his Gleason was 6 if I remember correctly. Art should avoid a bone scan.
Pelvic CT generally are not recommended unless staged T3/T4. Id.
> I'd go with the tests.
If I were Art, I wouldn't. I would also be concerned about doctors that put their financial interest above the interest of the patient.
I like that, a good balance of opinions among the group.
I have not canceled yet and the first apointment is bright and early on Monday. I guess I could call in "sick" (ha, ha) if I develop a conviction that I should not go through with it. I do not think that my urologist is thinking about his wallet, but I guess I cannot know that for sure. He does not even have privileges at the hospital where the tests are taking place. I think there may be an infatuation here with data, data, data, especially since for years, you had to wait forever to get at some of these kinds of tests.
> On Jan 2, 10:17 am, zeros...@midsouth.rr.com wrote: > "Cost did enter into my decision to > forego SRT even though it was not I who would be [directly] paying for > it. "
> Thank you, from the bottom of my heart.
> -Gordy
Speaking of which, as I recall, we were expecting a report on June 9. We may be two reports in arrears by now. How are you doing?
-- 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 undetectable since, < 0.04 on 10/09/08 Illegitimati non carborundum
ron wrote: > it has been > reported by the National Academy of Sciences that "one CT scan exposes > a patient to the lower range of radiation received by some Nagasaki > bombing survivors. Up to one in a thousand patients will develop > cancer from this exposure. Sixty million CT scans a year will thus > cause cancer in thousands of people. Yet most consent forms are silent > about this." Yesterday, in a thread on Fosamax we were discussing how > the medical establishment is getting word out on cancer causing side > effect that may affect one in a million people. Apparently, the risk > with CT scans is 3 orders of magnitude greater, but the same medical > establishment has been pretty quiet on this issue
I'm often advised by my CT techs (I've had 8-10 CTs) of their hazard, and have specifically asked them and some docs about it. Their response is consistently something like "Yes, they're hazardous, but the alternative -- overlooking an existing cancer or other suspected significant threat -- is considered a bigger threat". It's a nearest alligator sort of thing, not unlike RT for PC, which is suspected of sometimes causing rectal cancer decades down the road.
OTOH, the CT I refused was looking for restricted sinus drain holes, because I sometimes get sinus infections, mere nuisances as long as I stay ahead of them. That particular doctor is a myopic idiot, yet another example of why I encourage people to research their ailments and question their physicians.
On top of that, Fosamax's downsides extend beyond ONJ and beyond its slight risk of esophageal cancer (one of the worst cancers, I've read)., not to mention that a majority of men our age have acid reflux our outright GERD, which contraindicates Fosamax, rendering it ill advised or unavailable as an anti-osteoporosis ADT crutch. And on top of THAT, the PPI's we take for our GERD are coming under fire for their obvious downside: our stomach acid serves several beneficial purposes, which PPIs impair.
Just a few more examples of "can't win for losing".
Anecdotally and thus of no use to anyone, the CT I got looking for PC mets before my initial treatment saved my life by finding a much more virulent unrelated cancer. Sometimes we DO win one.
> On 1/2/09 8:55 PM, in article gjlrga$or...@news.motzarella.org, "Steve > Kramer" <skra...@cinci.rr.com> wrote:
>> I'm a little suspicious of those expensive tests, but it seems fairly >> universal that the doctors want them.
> Bone scans are not recommended unless PSA > 20 ng/mL or Gleason? >8 or > staged T3/T4. Art doesn't qualify as his PSA was 11 and his Gleason was 6 > if > I remember correctly. Art should avoid a bone scan.
> Pelvic CT generally are not recommended unless staged T3/T4. Id.
>> I'd go with the tests. > If I were Art, I wouldn't. > I would also be concerned about doctors that put their financial interest > above the interest of the patient.
They seem pretty universally recommended to me. I don't know who does not recommend them, but they were recommended to me with a 16 PSA and T2a Stage and 7 Gleason.
-- PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA undetectable since, < 0.04 on 10/09/08 Illegitimati non carborundum
toledo wrote: > On 1/2/09 8:55 PM, in article gjlrga$or...@news.motzarella.org, "Steve > Kramer" <skra...@cinci.rr.com> wrote:
>> I'm a little suspicious of those expensive tests, but it seems fairly >> universal that the doctors want them.
> Bone scans are not recommended unless PSA > 20 ng/mL or Gleason >8 or > staged T3/T4. Art doesn't qualify as his PSA was 11 and his Gleason was 6 if > I remember correctly. Art should avoid a bone scan.
> Pelvic CT generally are not recommended unless staged T3/T4. Id.
>> I'd go with the tests. > If I were Art, I wouldn't. > I would also be concerned about doctors that put their financial interest > above the interest of the patient.
There is a flip side to consider. Since CT scans are the gold standard for detecting recurrence of my more threatening cancer, I've had a few of them since my dual cancer surgery ... all negative for any cancers anywhere in my abdomen. Proof I'm clear? No, but quite reassuring, and some hope that I might just make it until something better than SRT or ADT comes along. I'm quite sure I'd accept any and every scan my oncs could think of and approve before accepting PSA-based SRT or asymptomatic ADT.
I do have some additional reassurance in that my oncs don't make a dime off my cancer. Their VA time is paid by the day, not the disease, yet their expertise comes from their university teaching hospital status ... arguably the best of both worlds.
artfer...@gmail.com wrote: > I like that, a good balance of opinions among the group. > I appreciate the exchange.
I think that's one of the best advantages of this form of discussion. If all we could access is one side of each issue, we'd blindly ride railroads into all sorts of unjustified paths. I wish more people valued valid, informed, well-considered decisions as highly as they value peace and quiet.
They'll get plenty of peace and quiet after their cancer runs its course; little point accelerating that by avoiding informative debates now.
> I guess there are several factors that I see here that argue for > maintaining the tests: > 1) My PSA is not what one would call low. > 2) These tests will potentially serve as baselines for future tests. > 3) Most doctors expect them and probably will not be happy until > they have them.
I found Dr. Chodak's opinions very interesting. Many doctors are very careful to say nothing that could be construed as a criticism of other doctors and their common practices. Chodak however seems to be willing to speak against conventional wisdom and went so far as to say that many doctors who order bone scans aren't aware of the studies that show their inefficacy for untreated patients with PSA under 20.
I also liked the way Dr. Chodak stated under what circumstances he thought the tests were useful as well as when he thought they were not.
I'm not qualified to have much of an opinion on whether he's right or wrong. Unlike him, I haven't looked at reports from these tests, wouldn't know what I was looking at if I did, and haven't read the statistical studies that he cites to back up his opinions.
One thing that he says that makes a lot of sense to me is that we should ask questions about the tests before consenting to them. Questions that he raises are:
1. What percentage of patients with my PSA, Gleason and staging get true positive results and what percentage get false positives?
2. If the result is positive what, if anything, should be done to confirm that it is a true positive and not a false positive?
3. How will treatment change if there is a positive result?
4. What are the risks and side effects of the test itself?
If the doctor hems and haws and changes the subject, then he probably hasn't got good reasons for ordering the tests and isn't clear about how he'll use the results.
I have read that sophisticated medical imaging tests are one of the two biggest money makers for hospitals, the other being surgery. There are even some hospitals that decide who is allowed to practice there based on the number of imaging tests that they order. So buyer beware. A significant purpose of these tests may simply be to extract money from the insurance company.
Patients like tests. I always did. They make us feel like the doctors are taking our problems seriously and really trying to find out what's wrong with us. You get in that big MRI tunnel and hear the banging sounds and feel the motion of the gurney and think, yeah, this is more like it, now we're really going to find out what the problem is and what to do about it.
But if Dr. Chodak is right and 130 bone scan patients out of a thousand with a PSA < 20 get false positives compared to 3 with true positives, then it sure doesn't sound useful to me.
I also agree with Ron's point. These tests are not completely uninvasive. For some of them, significant amounts of radiation are beamed through your body, or injected into it in the form of radioactive isotopes. We don't really know the long term effects of doing that, but it's something we don't want to do a lot of without having a good reason.
So I hear the tests I have scheduled are bad. So what are good tests?
I'm very skeptical of the statistics at this point in determining what tests are necessary. I have been treated for "BPH" for 10 years. I am 51 now. I was told I was "too young" for it to be cancer. Now that a DRE finally felt a tumor, it appears it was cancer all along. So much for playing the odds. They were played in my case and I lost. So now what? Who pays for the miscalculation? My wife and kids, that who! Who will compensate them for the doc playing the odds and being wrong? Who will pay our mortgage and for educating our kids if I don't survive?
I am two days post diagnosis. Gleason 3+3=6, both lobes (T2c).
I have five kids and am in the prime earning years in a great job. This really sucks!
On Jan 4, 3:54 pm, JohnSal <jdsalisb...@yahoo.com> wrote...snip...
> So I hear the tests I have scheduled are bad. So what are good tests?
It would be inappropriate for me to say that a test is good or bad for you. I think most here have simply stated some pros and cons about specific tests, with that information you can make a decision about the tests that is right for you.
As far as tests that might be useful, IMO, an endorectal MRI by one of the following John Kurhanewicz, Ph.D. Associate Professor of Radiology Director of the Prostate Imaging Group and Biomedical NMR Lab China Basin Molecular and Functional Imaging Center Department of Radiology University of California San Francisco 185 Berry, Suite 377 San Francisco, CA 94143-0946 Tel: 415 353-9410 Fax: 415-353-9423 E-mail johnk at cash.ucsf.edu Chris Sotto (415-353-9452) for scheduling
Peter Scardino MD (212-639-7955) Memorial Sloan Kettering NYC
or a color doppler ultrasound by one of the following Duke K. Bahn MD Medical Director, Department of Radiology Prostate Institute of America Community Memorial Hospital of San Buenaventura 168 N. Brent Street, Suite 402 Ventura, CA 93003 888-234-0004 805-585-3082 Fax: 805-641-3965 dkbahn at cmhhospital.org
Katsuto Shinohara MD 1600 Divisadero Street, 3rd floor UCSF San Francisco, CA 94115 Tel:415-353-9877 (assistant Mary) Fax:415-476-8849 kshinoh...@urol.ucsf.edu
Fred Lee, MD Crittenton Hospital 1135 W University Dr, #420 Rochester, MI 48307 (248)650-4699
would provide information that you and your doc could use to better characterize your PCa. If you haven't already had your biopsy slides reread by an expert PCa pathologist, that would also be worth doing. Baseline 25(OH)D3 and bone mineral density tests would also be useful (many men with PCa have low calcidiol and require supplementation, and are prone to low bone density)...ron
JohnSal wrote: > So I hear the tests I have scheduled are bad. So what are good tests?
> I'm very skeptical of the statistics at this point in determining what > tests are necessary. I have been treated for "BPH" for 10 years. I > am 51 now. I was told I was "too young" for it to be cancer. Now > that a DRE finally felt a tumor, it appears it was cancer all along. > So much for playing the odds. They were played in my case and I > lost. So now what? Who pays for the miscalculation? My wife and > kids, that who! Who will compensate them for the doc playing the odds > and being wrong? Who will pay our mortgage and for educating our kids > if I don't survive?
> I am two days post diagnosis. Gleason 3+3=6, both lobes (T2c).
> I have five kids and am in the prime earning years in a great job. > This really sucks!
John, that doctor is as dumb as mine was about cancer. Find another one now. In fact, after reading a few PC books, consult at least two oncologists, one or more each for radiation and surgery. Note I said "after" reading a few books; that's so you'll recognize an idiot oncologist, examples of which we hear about here several times a year.
OTOH, with a Gleason 6 T2c at age 51 you're probably more likely to miss a month of your career than a year or decade of it. Take some work home with you or telecommute if you get surgery, go to work an hour late for five weeks if you get external radiation, or just smile and sit and walk carefully at the office if you get seeds. Don't start worrying much about anything worse (except maybe trying having more kids or trying to avoid same) until you see proof your first treatment was only a rehearsal. Just do not -- I repeat: DO NOT -- base your treatment choice on those near-term work impacts. A few hours, days, or even weeks devoted to treatment now will not matter as much to your income or old age activities as will the medical decision you make. i.e., go for the optimal cure, not near-term convenience, if the two are at odds (I haven't read a chapter on seeds for many years now, but I'm GUESSING they will be a prime candidate). And even if you chose against all advice to just watch your cancer grow, you may still have the privilege and pleasure of paying off your mortgage and educating your youngest offspring unless your staging numbers increase upon closer inspection.
Besides, beyond employer-matched IRA and/or 401-k funds, your best investment right now is probably that mortgage. Nothing else I can find beats its guaranteed 3-4% return after taxes right now, except that it doesn't directly pay tuition any time soon.
It still sucks, but if we're gonna get any cancer worse than a simple rogue mole, this is the one to get.
> So I hear the tests I have scheduled are bad. So what are good tests?
There are some who believe them to be unecessary and expensive. There are very few that believe them to be bad. Personally, mine found nothing, but then again it appears there was nothing to find outside the prostate.
> I'm very skeptical of the statistics at this point in determining what > tests are necessary.
I think you will also find here a universal belief that statistics are very interesting, but of little value when it comes to YOUR cancer. No one can know on which side of a 80/20 split they are sitting.
> I was told I was "too young" for it to be cancer.
My father was told that when he was 40. He was diagnosed at 42 and died at 50. I was told that at 46, but it was euphamistically. Of the 900 or so people I have seen come and go in this NG, 117 were 50 YOA or less. 50 were my age or less. 13 were 41 or less. Clearly, one can get prostate cancer at your age.
> So now what? Who pays for the miscalculation? My wife and > kids, that who! Who will compensate them for the doc playing the odds > and being wrong? Who will pay our mortgage and for educating our kids > if I don't survive?
First, you may be jumping to a wrong conclusion. It is possible that you had no cancer and now you do have cancer.
Second, you may be too fatalistic. With a Gleason 6, assuming no penetration through the prostate (which would be a T3 or T4), you have a really good shot at beating the bastard. Furthermore, surgery will cure whatever prostate problems you have had in the past.
Third, if you do have cancer and find it is out of the barn, then I will invoke myself as an example. I was 46 when diagnosed and my Stage is T3. I had three kids and was in the prime earning years in a great job. Eight years later, my kids are married, I have eight grandchildren, and I will retire at the end of this week having made enough to take care of my wife when I assume room temperature.
This disease sucks, but it does not instantly end your life.
-- 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 undetectable since, < 0.04 on 10/09/08 Illegitimati non carborundum
JohnSal wrote: > I am two days post diagnosis. Gleason 3+3=6, both lobes (T2c).
> I have five kids and am in the prime earning years in a great job. > This really sucks!
Kevin, my husband was dx last march just a few days before his 65th birthday. He was gleason 9 in all 12 samples and he had 44 sessions of IMRT, plus he is taking Lupron shots for three years.
He arranged to have his radiation treatments late afternoon so he could put in an almost full day of work. During this time he missed one hour of work each day and took maybe 2 or 3 other days off from work.
Although the Lupron shots are leaving him more tired, he is still working full time and has 3 more years untill he can retire.
