Current beliefs about PC that are being challanged.

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John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 4/7/2010 12:53 PM (GMT -6)   
There are certain beliefs about PC that doctors and patients have that influence their decisions. New data is constantly comming out that is challanging these long held beliefs. I would like to start a thread that examines these and anyoneone can feel free to add or to challange them. These challanges are slowly changing the way many doctors now view PC treatments; but there is a long way to go in changing entrenched belief systems.
 
1.  Belief: Active Survielance is dangerous. Challange: AS is the safest option for those meeting the criteria.
2. Belief: Diet has no affect on PC prevention or progression. Challange: Diet has a significant affect on slowling PC growth.
3. Belief: Surgery is the gold standard and has cure rates above other treatmets, especially in higher gleason grades. Challange: All treatment options have similar cure rates in low risk PC and other options indicate better cure rates with higher Gleason grades.
4. Belief: With failed surgery you get a 2nd chance, and with radiation there are no viable salvage treatments: Challange: There is only a 6% probability in this outcome (20% reoccurrance  X 30% success rate). There are secondary treatment for failed radiation that have the same success rate as SRT for failed surgery.
5. Belief: Side affects are not important; 1st thought should be to get the cancer out. Challange: The side affects of surgery are underestimated by doctors and patients and other options have similar cure rates with much less side affects.
6. Belief: Hormone therapy should be a last option and used only when PSA rises significantly after local treatment: Challange: HT should be used in conjunction with local treatments in high risk cases and is more effective when psa is at a very low level.
7. Belief: CT and bone scans should be given to every PC patient. Challange: Bone and CT scans in anything under 40 psa are as good as a coin flip, and just waste money and give a false sense of security.
8. Belief: Biopsies and psa provide sufficient data on which to base a decision. Challange: Biopsies are inaccurate and more data is needed for a proper clinical staging. PAP, MRIS, Color Doppler, ploidy analysis and the use of Artificial Neural Nets provide significant additional data for a proper clinical staging before treatment.
9. Belief: Universal PSA screening saves many lives. Challange: Screening should take place only for those patients with high risk factors as overtreatment and QOL issues overshadow the small amount of additional lives saved.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 4/7/2010 2:16 PM (GMT -6)   
John, I applaud your putting forward these point/counter-points about current "conventional wisdom" for discussion. I have some problem with your choice of wording in some of them, but as a whole you have captured key areas of evolving trends.  I will come back later to challenge some of the wording and possible over-statements in a follow-up post (maybe tomorrow I'll have some time for a well-thought response on wording; no time today), but I wanted to acknowledge you putting this forward. I was thinking about responding to the post you started a few days ago on the short-term QoL study, but that thread ended up going all over the map in too many directions (it ended up touching on many of the same topics you've got here in this "conventional wisdom" thread), so I stayed on the sidelines.  Glad that you organized the topics in this new thread.
-Casey

Post Edited (Casey59) : 4/7/2010 2:04:09 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/7/2010 3:18 PM (GMT -6)   
John, I agree with Casey, putting these "beliefs" out there in this format is good fuel for conversation and education. With 9 out there, it would almost make more sense "thread" wise, to tackle one per thread, or else could get some long complicated replies. I would be interested to see some solid point and counter point on all of these. The answers might surprise some.

I, too, will be back to take a shot at some answers/opinions.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 4/7/2010 3:43 PM (GMT -6)   
John,

Nice post. Thought I would take a stab at some of my initial, uneducated, unreserched gut reactions. Nit sure there are right or wrong answers on many of these .

1. Belief: Active Survielance is dangerous. Challange: AS is the safest option for those meeting the criteria.

I think the word safest is probably a stretch . Perhaps the least invasive with the fewest side effects may be truer. There is a risk associated with AS. Some of that risk is making sure the patient has correct data. Accurate biopsy, accurate pathology, accurate staging, appropriate follow up tests. If the patient does not get the proper diagnosis, it could be the higher risk option.

2. Belief: Diet has no affect on PC prevention or progression. Challange: Diet has a significant affect on slowling PC growth.

Hard to argue or prove either side of the coin, but most likely there is more truth than untruth. The question is, how much does slowing it down help ?

3. Belief: Surgery is the gold standard and has cure rates above other treatmets, especially in higher gleason grades. Challange: All treatment options have similar cure rates in low risk PC and other options indicate better cure rates with higher Gleason grades.

Hard to prove, because each case can be so different, particularly with higher Gleasons.

4. Belief: With failed surgery you get a 2nd chance, and with radiation there are no viable salvage treatments: Challange: There is only a 6% probability in this outcome (20% reoccurrance X 30% success rate). There are secondary treatment for failed radiation that have the same success rate as SRT for failed surgery.

The actual number of cases for this would be a question. Few doctors attempt post radiation treatment other than hormones.

5. Belief: Side affects are not important; 1st thought should be to get the cancer out. Challange: The side affects of surgery are underestimated by doctors and patients and other options have similar cure rates with much less side affects.

I don’t think the belief is stated accurately. I think the belief that curing the cancer is more important than side effects is more correct. I also think side effects of alternative treatments are understated.

6. Belief: Hormone therapy should be a last option and used only when PSA rises significantly after local treatment: Challange: HT should be used in conjunction with local treatments in high risk cases and is more effective when psa is at a very low level.

Still hard to prove.

7. Belief: CT and bone scans should be given to every PC patient. Challange: Bone and CT scans in anything under 40 psa are as good as a coin flip, and just waste money and give a false sense of security.

Don’t disagree with the waste of money part, particularly if patient is paying cash. But, if it finds 1 in 100 cases of lymphatic involvement, and I was the 1, I think I would be glad I had it, and the doctor’s insurance carrier would be glad he ordered it.

8. Belief: Biopsies and psa provide sufficient data on which to base a decision. Challange: Biopsies are inaccurate and more data is needed for a proper clinical staging. PAP, MRIS, Color Doppler, ploidy analysis and the use of Artificial Neural Nets provide significant additional data for a proper clinical staging before treatment.

Don’t disagree in some cases, but I maintain they are adequate in a high percentage of cases. Much like the CT and MRI challenge, it will tell us what we already knew in many cases. Availability and medical education are two other huge issues on this one.

9. Belief: Universal PSA screening saves many lives. Challange: Screening should take place only for those patients with high risk factors as overtreatment and QOL issues overshadow the small amount of additional lives saved.

I must disagree with this one as one who was “saved” by early diagnosis. What we do with the PSA screenings data may be a better challenge.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/7/2010 3:49 PM (GMT -6)   
I'm lovin your post and tenacity to show what is what...I know the PCa world needs repairs (LOL), good work in your searching, John, I have witnessed alot of b.s. and seen lousy advice given to patients from various docs, some good advice too. I have said:
 
Question everything and always
This is the Twilight Zone, Limbo Land, Jungle.....that is more fact than fiction.
 
If the docs are to be held as "experts", why is it that in general many fail to be even close to such an honorable label as being held to expert status....is it the money????  A really good doc will tell you hey 'we don't know it all and don't have all the answers', then explain what is available and tell you to think it over and maybe come to your decision...how often does that happen???  I love this thinking..'but he is a doctor he should know everything'???? (Fact- doesn't come close and it is better to get further education and opinions as your best possible scenario even if you cannot be cured).
 
You wouldn't believe what my brothers wife has gone through, witnessed and what decent results they have gotten  outside the box..on their multiple myeleoma cancer. Amazing variations in assessments, protocols, huge costs and then you find out all those treatments may make little or no difference in most patients, makes PCa look tame..so who benefits on such??? (it is barely the patient). 
 
 
Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 4/7/2010 3:44:23 PM (GMT-6)


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 4/7/2010 4:24 PM (GMT -6)   
NEWBIES: Just a reminder to any newbies who may be reading what we post here.

We offer no medical advice here and John T is not offering the same. Medical advice that you act upon should be acquired from a trusted health care professional. You decide on whom you may trust.

I think that the "beliefs" stated in this post are stated in a very narrow way to make the point of the topic poster. A competent health care professional should not be evaluating your diagnosis or treatment path using the narrow wording of the beliefs as stated here. If they do, you probably need to continue searching for advice.

The "challenges" in this post are stated in a more open way and in a way that may infer that many are now fact. Truth is, we just don't know how all these options apply to each individual for a certainty. That's why the studies continue.

I personally have not found hard and fast statistical profiling methods that would help a health care professional apply a specific treatment therapy to ensure the best result for each individual. Health care professionals are human and each will likely tend towards what they've experienced works for their patients using their unique skills. That's why multiple opinions are really necessary when you need treatment.

Each person's case is unique in both where and how the disease has been contained or has spread and the aggressive nature of the disease. That combined with the fact that our bodies react differently to the same treatment, makes us certain that the treatment debate will go on. So, for example, surgery may still be the "gold standard" or "golden" choice for one. Radiation may be the "golden" choice for another with the same clinical diagnosis as the first.

So continue to keep reading experiences posted here and elsewhere and make your best educated guess combined with thoughtful / prayerful consideration for treatment and post-treatment.

Thanks to John T for the post.

I wish you all the best in your treatment decisions.

Barry
Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/'07 <0.04; 12/'07 <0.04; 03/'08 <0.04;
06/'08 <0.04; 12/'08 <0.04; 06/'09 =0.06; 09/'09 <0.04; 12/'09 =0.05;
Latest PSA 3/'10 <0.04


rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 4/7/2010 4:34 PM (GMT -6)   
Hi John,
 
Great thought provoking post.  As someone new to the pc world-my husband was diagnosed 3 weeks ago today-i've been reading everything I can.  One thing that has really interested me is Dr. Dean Ornish's studies on diet and pc patients with glesson 6 or under.  He doesn't say it can cure pc but seems to have shown that it can seriously slow it down.   We used some of his diet ideas when my husband had an angioplasty 6 years ago and his heart doctor was amazed at the results-suffix to say we are going to try his diet to the best of our ability-My husband (56) was diagnoses a gleeson 6 , psa at time of biopsy was 4.7   5 cores of 10 positive. We are still working thru the treatment options, but we wish things were a little clearer.  Doctors seem to down play the side effects, but some of the posts here show they can be down right dreadful. 
 
Renee

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 4/7/2010 4:52 PM (GMT -6)   
5. Belief: Side affects are not important; 1st thought should be to get the cancer out. Challange: The side affects of surgery are underestimated by doctors and patients and other options have similar cure rates with much less side affects.

I will offer my opinion on the above.... I maybe wrong, but isn't the doctor's creed to heal the person to the best of their ability as their guiding position for health care. As far as side effects, I believe it is actually impossible for any doctor to assess what the side effects will be for any given individual regardless of treatment. But because this statement is directed at surgery, most doctors can only quote what their experience has been for them. I believe that if a survey could be completed accurately without the prejudice or skewing, it will show that more men will have minimal side effects with todays surgical standards, than just 10 years ago and will actually match that of any other form of treatment offered today.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08
                 12 month Oct 2009 .09 


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 4/7/2010 5:43 PM (GMT -6)   
Good thoughts, Les.

Great to hear from you again!

I hope you're doing well.

Barry
Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/'07 <0.04; 12/'07 <0.04; 03/'08 <0.04;
06/'08 <0.04; 12/'08 <0.04; 06/'09 =0.06; 09/'09 <0.04; 12/'09 =0.05;
Latest PSA 3/'10 <0.04


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 4/7/2010 6:35 PM (GMT -6)   
Les,
Respectively disagree. A doctor's creed is to: "first do no harm". I bet most patients would be surprised that only 28% of surgery patients achieve a no leak no pad status at 2 years. Permenant incontince is high. Sexual function is also underestimated with a low % recovering full sexual function equal to that prior to surgery. Penis length that is shorter and ejaculating urine is rarely mentioned.
A golfing partner of mine had surgery 10 weeks ago. He said he would be golfing again within 4 weeks; last I taked to him he is still 4 to 6 weeks from going back to work.
I think that most patients' expectations are too high. If you are young and in very good health those expectations are more realistic. One only has to look at the posts on this board to see that the vast majority of posts relate to dealing with side affects from surgery. My only point is that both doctors and patients have to be more realistic about side affects and not downplay them.
Dr Walsh recently said that he now believed that surgery was too morbid for low risk cases and should only be reserved for the highest risk cases. Quite a statement from one of the best known surgeons.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/7/2010 7:17 PM (GMT -6)   
John, can you cite Dr. Walsh's new opinion or updated opinion, would like to see how he worded that statement (not doubting you)

I think some surgery guys do have very unrealistic expectations of their surgeries in advance. Perhaps its because some had never underwent a major surgery before, paritcually an adbominal type surgery. Also, there are surgical practices that toot their own horn a bit too much about side effects and how they describe sucess is very subjective at best.

People have got to understand, not to take PC surgery lightly. My own surgeon said it's one of the most complex out there, period. The robotic vs. open argument gets old to me, all I will admit that robotic by sheer numbers is definitely the number one choice. But then we have men that think its a walk in the park, and you will just get over it in a few short weeks.

I give my uro/surgeon credit. he never bragged about anything, when it came to side effects, he told me in great detail the variety of things that can go wrong, and what can be done if it does. he was upfront about incontinence issues and ED in particular, stating that despite the best nerve sparing operation, one can still remain with total ED. He also told me, with my open surgery, to realistically expect a full year to recover. Not counting my chronic stricture issues, that was a pretty good estimate. And as far as my lack of ED with only one nerve bundle left behind, and noted "damaged", he still refuses to take any credit for it, still is amazed, and still says it makes no medical sense for me to be working fine.

You are right, the bulk of the posts here do have to do with things that didnt quite go to plan after surgery, that's a valid point in my opinion.

I think if there were some way to record everything 100% accurate involving PC treatments, the real results would be disturbing, if only facts were report, and there were no cherry picking or playing with the numbers and percents. I don't consider a person continent if they are still using a pad a day, and needing it, yet many that produce stats of sucess would say that person is continent.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 4/7/2010 7:34 PM (GMT -6)   
Dave and Les,
I was wrong about the quote. It was from Scardino and not Walsh.
http://prostatecancerinfolink.net/2009/12/16/is-surgery-best-reserved-for-first-line-treatment-of-higher-risk-prostate-cancers/

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/7/2010 7:51 PM (GMT -6)   
John, thanks for the correction.

Still, some pretty amazing opinions and conclusions from such a noted surgeon. Everyone contemplating PC surgery should at least give this report a quick read. Brings up a lot of newer thoughts on the subject that have been talked about here in recent months.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 4/8/2010 8:29 AM (GMT -6)   
JohnT....thank you for the response....I will agree that surgery is often performed on low risk cases for men that maybe shouldn't have had any treatment at all, but the premise above was that the person DID require treatment and that person did choose surgery as their choice in treatment. Now take in the fact that most numbers from statistics are quite dated and could be as much as 8-10 years old I believe that men who are still incontinent at the two year mark isn't the 72% as you suggested. I would say the numbers are probably the otherway around...or did I miss-read your statement? Just as radiation therapy has improved to reduce the effects of ED, so has surgery improved with the nerve sparing and in some newer cases nerve grafting is being performed to reduce the ED.

Bottom line, research and methods are continuing to improve to reduce or even eliminate much of the side effects from any form of treatment. Side effects from any type of surgery is common. But the percentages of the side effects from surgery are greatly skewed...in both directions and for anyone in that dreaded position of trying to decide which route to go for treatment, they will not know in advance what their own reaction and recovery will be like before hand. If everyone decided to treat cancer solely based on what the side effects would be, I am afraid there would be more incidence of treatment failure. Choosing radiation treatment over surgery solely based on side effects may not cure the patient from the cancer, at the same time choosing surgery over radiation when it is probable that the surgery will fail is just as wrong. There are way too many factors to consider in treatment choices and side effects are only a small part of that decision process. You yourself didn't chose your treatment path based on side effects. Your goal as well as any man, was to treat the disease first and then deal with the side effects if there were any. One point is very clear however, with surgery the side effects will be immediately with a chance of improvement...with radiation, the side effects will come later on and not necessarily will there be any chance of improvement after that. But that doesn't mean every person will have side effects for either form of treatment and if they do, the degree of the side effects cannot be determined beforehand.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08
                 12 month Oct 2009 .09 


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 4/8/2010 9:06 AM (GMT -6)   
A nice thought provoking set of issues.

To get the right treatment what matters is an accurate diagnosis. There are lots of catch 22 situations such as post-op pathology that results in upgrading of Gleason, so that there is the risk of people not taking enough action when they think they have got Gleason 6 but have actually got a 7.
What is therefore needed there is more accurate tests, biopsies CAT/MRI with better markers etc. (eg something I was asking folk about a few weeks ago re testing semen)
The problem almost a philosophical one. Is it better to have a system that treats people who might perhaps not actually have needed the treatment or not to treat people who do actually need treatment.

The "rivalry" between surgery, radiation etc as to which is best for which patient could perhaps be addressed by having a unified approach from the medical world so that in the first instance you are seen by a prostate cancer specialist and not by a uro who is by definition a surgeon.

Lack of screening can result in lack of awareness about what PCa is and what to look out for etc. When I went to my PCP/GP a year ago for a general check-up I did not even know that PSA testing existed. The fact that I then had a PSA test and my PCa was found was thus pure luck.

re diet the following study was reported in my newspaper this week suggesting diet is less important re cancer prevention than was originally thought:
www.medicalnewstoday.com/articles/184646.php
diet appears to be more relevant for general health such as heart conditions.

The way treatments affect quality of life is indeed important. What might help would be a proper way of measuring what quality of life is. I started out thinking that the six inches between my legs was the thing that was going to be the big issue and then found that it was the six inches between my ears. I have been much more worried about the fact that I have cancer and what the future will bring than that little Alf isn't what he used to be.

good stuff John

Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc.
Nov 17th 2009 PSA = 0.1
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 4/8/2010 12:03 PM (GMT -6)   
Les,
I'm not advocating radiation over surgery in this post. Just stating that the side affects of surgery are often underestimated.
Reynolds and Colleaques published a report in 2009 on incontenence after Robotic surgery. This is good recent data from one institution with good follow up of over 1000 patients:
After surgery, the proportion of patients who were LFPF at specific time periods was
4 percent (40/1,005) at 1 month
9 percent (90/1,005) at 3 months
17 percent (171/1,005) at 6 months
24 percent (241/1,005) at 12 months
28 percent (281/1,005) at 24 months
In other words, although about three-quarters of the patients were LFPF before surgery, only about a quarter were LFPF at 1 year after surgery, and that didn’t increase much at 2 years after surgery.
10% of the patients had severe permenant incontinence.

I think that most patients undergoing robotic surgery do not expect these resuts. Scardio at MSK in his book also indicates that 40% of all surgeries done at MSK are considered failures; defined as no cure, permanent side affects or severe complications. I also don't think that most patients undergoing surgery think they have a 40% chance of failure. This is real quantifiable data not estimates by someone. These were also done at the best institutions so one can assume that the results are better than those done in a community setting.

My own opinion is that after using partin tables and artificial neural networks to compare treatment options in your individual case and two treatment options are equal in cure rate then you should choose the one that gives you the least amount of side affects. I think this is a very logical approach and takes emotion out of the decision; but that's just me. I would gladly give up a few percentage points of cure rate as a trade off for quality of life issues. Others may not, but the main point I'm trying to make is to make that choice with good data and accept the outcome with with eyes open and not with unrealistic expectations.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 4/8/2010 1:35 PM (GMT -6)   
Well put John and thanks for the post. I don't dig as deep as you do into research and statistics with this disease, but I addressed this issue from my own experiences and the mindset of my uro/surgeon that statistics are skewed in any direction that a person wants them to go. I had to rely on my surgeons experience that he had when dealing with the questions of side effects. He said that over 90 percent of his patients would not endure long term incontinence. So I went with that because that is what his experience has been with his skills set. (Which is why a person should always choose the best surgeon available) I don't think he was boasting, he was just being honest and straight forward with me when I asked the questions. As far as ED, his success was lower, however as he put it, too many other factors control ED besides the surgery itself. He was also honest to say that you will never be at the pre-surgery level when completely healed afterwards. But the inconvience of using drugs to gain acceptable usage is better than the alternative.

I will lend to your knowledge as you are one of the very few here that is extremely knowledgable and I know you know what you are talking about. But it is still very hard for me to believe (or accept) the incontinence percentage is that low after surgery.

Again thanks John for this post...very enlightening
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08
                 12 month Oct 2009 .09 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 4/8/2010 1:53 PM (GMT -6)   

JT...great post and great thread.  I could nit-pick a couple of your points but choose not to do so as I think overall this is an excellent and well thought out perspective.  I have copied and pasted your list into my "save" file since I think this is a classic.  You are becoming one of my favorite authors after Vince Flynn and John Grisham...LOL..

Tudpock


Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/09.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Gleason7
Regular Member


Date Joined Feb 2010
Total Posts : 111
   Posted 4/8/2010 2:49 PM (GMT -6)   
PC options:
Haven't read any mention of BPH involved with what options are best for dealing with PC. Also little mention of how much more involved a cancer quite often is after the organ has been removed and the pathology report comes back. If one gets a great surgeon who is willing to take the time to save nerves and properly repair the bladder / urethra connection and tissue supporting the bladder surgery just might be the way to go. Like other professions (car salesmen for an example), If he sells Chevy's then that's the only car one should buy. If he sells "self accelerating Toyota's (had to stick that in) then Toyota is the only way to go. (one procedure over another) External radiation takes MANY sessions and while short in duration...a long time. With an enlarged prostate / cancer location some nasty stuff can happen with nasty to repair damage to the urethra and bladder neck. Cryosurgery, same things can happen with having to irrigate the bladder and urethra to avoid freezing damage. And then leaving it in with the thoughts of another spike in PSA / perhaps more biopsy's. One point that turned me off to radiation was using a piece of chicken breast in a microwave to defrost it and you zap it a tad too long. That tissue in the center turns to rubber like material. Same with prostate tissue or once it's zapped other treatments are far more difficult.


74 years old, BPH for many years (three times normal size) with PSA's rising to 6.7 in December 09. Last biopsy December 09 found 2 of 12 cores with PC. lab suggested 3+4=7 pt3a. Vattikuti (Henry Ford) robotic prostatectomy 2/10/10 by Dr. Peabody Four hours as more time was required to make the urethra / bladder connection. In my room @ 9:00 PM. Next afternoon the penile catheter and robotic access incision grain catheters were removed and I was home by 4:00 PM. Pubic catheter removed ten days later. Post op pathology: Seminal vesticles, vasa deferentia and all surgical margins negative of tumor. Five week PSA unmeasurable. Incontinence: night time I wear a pad but could get by without same. With no heavy exertion that pad is good with a few drips till my evening shower.

Have been following the Don Imus PC saga and his / wife's herbs and diet approach with the big "C" constantly peeking over his shoulder...no thank you.

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 4/11/2010 12:38 PM (GMT -6)   

John, I applaud you for putting forward these discussion points.  Your effort and original thought in assembling these is valuable.  In the spirit of Kaizen (small, incremental improvement), I offer some wording and/or comment on each item.  Your work has taken the ball 90-yards downfield; I hope that my contribution helps to push it towards the goal line.  This thread may be valuable to others in the future.

I've adopted the phrase "conventional wisdom" instead of "belief" because I think it more fully encompasses what you were seeking to express.  Conventional wisdom (CW) is a generally accepted idea which may or may not be true, but may be an obstacle to introducing new solutions, explanations, or theories.  CW often has "inertia" which opposes introduction of a contrary belief, sometimes to the point of absurd denial of new information set by persons strongly holding an outdated view which might be convenient, appealing and/or formerly true.  The "new reality" (NR) emerges from new facts, and may initially seem counter-intuitive to the CW.  Over time the NR itself becomes CW, and the cycle repeats itself.

 

John T said...
1.  Belief: Active Survielance is dangerous. Challange: AS is the safest option for those meeting the criteria.
1.  Conventional Wisdom (CW):  Active Survielance (AS) is dangerous.
 
New Reality (NR):  AS is an accepted medical practice, and is considered the "best option" for many patients with low risk cancers.  AS involves actively monitoring the course of the disease with the expectation to intervene if the cancer progresses.  Most patients diagnosed with PC today are low risk, and acceptance of AS is increasing with the shift towards earlier and earlier stage diagnosis attributed to PSA testing.  If serious improvements are to be made in reducing aggressive "overtreatment" of PC, then more first-line doctors will need to become better educated on AS.  We need to aggressively treat PC cases that need aggressive treatment, and not aggressively treat those that do not need aggressive treatment.
 
 
 
 
 
John T said...
2. Belief: Diet has no affect on PC prevention or progression. Challange: Diet has a significant affect on slowling PC growth.
 
2.  Conventional Wisdom (CW):  Diet has no affect on PC prevention or progression.
 
New Reality (NR):  There is no sure way to prevent Prostate Cancer, but certain diet and lifestyle changes aid in PC prevention or recurrence.  Carefully selected foods and dietary supplements have been shown through evidence-based science published in peer-reviewd medical journals, to slow progression of PC.  Leading PC specialists strongly recommend dietary changes in concert with other therapies.
 
Dr Charles "Snuffy" Myers, a highly regarded prostate cancer specialist (and himself a survivor of an aggressive case of PC), has published a "Comprehensive Management of Prostate Cancer" document which includes:

"I think you would be foolish to depend on surgery or radiation therapy as the sole tool to combat prostate cancer. As you will see, a combination of sensible diet and stress management has already been reported to slow the growth of prostate cancer from a median doubling time of 6.5 months to 17.7 months...

...You need to put in place a program that will slow or even prevent late recurrence of this cancer. This becomes even more prudent when you realize that the same program that makes sense for prostate cancer has proven benefits for the prevention and management of hypertension and atherosclerosis."

Unfortunately, but understandably, not all varieties of medical professionals are well versed in the impact that foods, dietary supplements and lifestyle changes can have on containing and/or slowing PC.  Consider this example:  A radiation oncologist treating a PC patient in the middle of the day has just seen a thyroid cancer patient, prior to that a breast cancer patient, and next is a lung cancer patient.  This doctor is expected to be fully up-to-speed on the latest info in his/her field of safely delivering radiation to fight cancer, but would not feasibly be fully knowledgable on the nuiances or developments of each unique cancer.  As empowered patients, we need to look to specialists in both PC and diet/lifestyle (like Dr Myers) for better guidance on steps which maximize the "odds" in our favor.
 
 
 
 
John T said...
3. Belief: Surgery is the gold standard and has cure rates above other treatmets, especially in higher gleason grades. Challange: All treatment options have similar cure rates in low risk PC and other options indicate better cure rates with higher Gleason grades.
 
3.  Conventional Wisdom (CW):  Surgery is the gold standard and has cure rates above other treatmets, especially in higher gleason grades.
 
New Reality (NR):  Surgery was the gold standard for cure for a number of years, but radiation (both external and brachytherapy) are now seen as equivalent, in the general scenario for the most commonly treated cases.  The AUA reports that data from peer-reviewed, journal published studies do not provide clear-cut evidence for the superiority of surgery over any type of radiation (or visa versa) in terms of cure or long-term side effects. 
 
 
 
 
John T said...
4. Belief: With failed surgery you get a 2nd chance, and with radiation there are no viable salvage treatments: Challange: There is only a 6% probability in this outcome (20% reoccurrance  X 30% success rate). There are secondary treatment for failed radiation that have the same success rate as SRT for failed surgery.
 
4.  Conventional Wisdom (CW):  With failed surgery you get a 2nd chance, and with radiation there are no viable salvage treatments.
 
I can only comment on this.  Radiation for localized recurrence after RP is generally considered to be very successful these days in containing PC…it was old conventional wisdom that it was only nominally successful.  Regarding salvage surgery after RT, even today most patients will  have trouble finding a surgeon to perform this procedure because of the rate of surgical complications; it is highly specialized.  Obviously, both of these examples speak to cases believed to be local; distant metastasis cannot be solved by radiation or surgery.
 
 
 
John T said...
5. Belief: Side affects are not important; 1st thought should be to get the cancer out. Challange: The side affects of surgery are underestimated by doctors and patients and other options have similar cure rates with much less side affects.
 
5.  Conventional Wisdom (CW):  Side affects are not important; 1st thought should be to get the cancer out.
 
I can only comment on this.  I personally don't believe the conventional wisdom has been that "side effects are not important" since the 1980's.  Perhaps this observation was blended with the notion that when discussing curative treatments (surgery or radiation), most doctors focus primarily on cancer cure and secondarily on side effects (and may, therefore, be preceived as understating the impact of side effects to patients). 
 
Side effects ARE important for the patient to understand with regard to Qualify of Life (QoL).  Speaking only to the two most common curative therapies—RP (radical prostatectomy, any type) and RT (radiation therapy, any type, or combination)—the immediate-term impacts are very different, but the long-term results for both cure rates and side effects are similar.  Almost without exception, surgery results in immediate incontinence and erectile disfunction, but most men with good pre-surgery performance in those areas recover to (or nearly to) pre-surgery levels after about two years (much less time for many patients; mostly about 6-months).  On the other hand, those same side effects or other radiation related/caused problems after RT generally set in slowly over time (reports vary between 2- to 5-years of performance degradation).  For both treatment modes, some relatively small number of patients experience little or no side effects in the short-term (for RP) or long-term (for RT).  The AUA reports that data from peer-reviewed, journal published studies do not provide clear-cut evidence for the superiority of any one treatment.
 
 
 
 
John T said...
6. Belief: Hormone therapy should be a last option and used only when PSA rises significantly after local treatment: Challange: HT should be used in conjunction with local treatments in high risk cases and is more effective when psa is at a very low level.
 
6.  Conventional Wisdom (CW):  Hormone therapy should be a last option and used only when PSA rises significantly after local treatment.
 
 I can only comment on this, although it is an area I am least familiar with.  The concept of primary androgen deprivation therapy (ADT) as a first-line treatment needs always to be more clearly distinguished from the use of neoadjuvant (before RP or RT) or adjuvant (after RP or RT) hormonal therapy.  First-line HT is rarely used in patients with localized PC, but HT is increasingly used, for example, to reduce an enlarged prostate prior to undertaking a curative treatment mode.  It should be noted, however, that HT before or after RP or RT increases side effects.
 
 
 
John T said...
7. Belief: CT and bone scans should be given to every PC patient. Challange: Bone and CT scans in anything under 40 psa are as good as a coin flip, and just waste money and give a false sense of security.
 
7.  Conventional Wisdom (CW):  CT and bone scans should be given to every PC patient.
 
New Reality (NR):  In the pre-PSA and early-PSA days, most new cases of PC were already in advanced stages and diagnosed only through palapable DREs or through other symptoms.  CT and bone scans became a routine tool for gauging the extent of the advance stage. 
 
In today's PSA era, most PC cases are clinically localized and present with no symptoms, and so CT and bone scans are not necessary in all cases, and are not sensitive enough to pick up small initial amounts of spread. 
 
AUA PC "Best Practices" document calls for scans for the staging of men with high-risk clinically localized PC when the PSA is greater than 20.0 ng/mL or when locally advanced or when the Gleason score is greater than or equal to 8.
 
Needless ordering of CT and bone scans consumes our limited health care resources which would be better spent in other areas.   
 
John T said...
8. Belief: Biopsies and psa provide sufficient data on which to base a decision. Challange: Biopsies are inaccurate and more data is needed for a proper clinical staging. PAP, MRIS, Color Doppler, ploidy analysis and the use of Artificial Neural Nets provide significant additional data for a proper clinical staging before treatment.
 
8.  Conventional Wisdom (CW):  Biopsies and psa provide sufficient data on which to base a decision [for treatment].
 
New Reality (NR):  Neither PSA tests nor biopsies are perfect test proceedures; both have known flaws.  For those considering AS or a focal treatment, additional testing for stage confirmation or tumor location identification is appropriate.  In other situations, further testing may or may not be appropriate.
 
 
 
 
John T said...
9. Belief: Universal PSA screening saves many lives. Challange: Screening should take place only for those patients with high risk factors as overtreatment and QOL issues overshadow the small amount of additional lives saved.
 
9.  Conventional Wisdom (CW):  Universal PSA screening saves many lives.
 
New Reality (NR):  Universal PSA screening has resulted in many more cases of PC being diagnosed, and at much earlier and earlier stages of progression.  Mass PSA screening programs are believed to be one significant factor leading to PC overtreatment.  (The American Cancer Society (ACS) is  discouraging participation in the kind of community mass screening programs you might find in your office building's lobby or in a bus parked outside the YMCA—unless they have the infrastructure to handle the complicated pretest discussion and whatever follow-up is necessary.) 
 
The centerpiece of the latest guidelines published by the ACS is the dialogue and "shared decision" between doctor and male patient regarding screening, treatments, side effects, etc.  In fact, that discussion is so important that they specify the ages to start dialogue—starting at age 40 for those with first-degree relatives with PC.
 
 
 
 
 
Respectfully submitted,
Casey
 
 
 

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/11/2010 2:12 PM (GMT -6)   
Nice write up Casey,
It still lingers a little bit too rigid for my own conventional beliefs, but it is better written. I would like to point out some food for thought on a couple of the points.

#1 Active Surveillance. AS is gaining in acceptance but it is also being overstated as to who should qualify and who should not. While guidelines have indeed expanded the "qualified" it still is a large minority of those diagnosed that fall within the guidelines I have read by the various definers. And a patient should be made aware that even though they may be low or very low risk and they will likely do well, there is still risk involved and those risks need to be stated.

#2 Diet. Mark Moyad said it best at PCRI last year. There are no "prostate" diets. But rather a prostate healthy diet is the same as a heart healthy diet. And ALL men should eat a heart healthy. I believe he stated something to the effect of "If you are diagnosed with prostate cancer, and you are not already doing so, now is a good time to take a look at your diet and eat better. And if it doesn't have any affect on your prostate cancer, excuse me for providing a healthier environment for what's more likely to kill you anyway"

#3 and #4 are very debatable. If you talk to a radiation doctor he will tell you that his therapy is the same as surgery. Same with a HIFU guy, same with a Cryo guy. I'll let the fact that all these guys make their comparisons against surgery speak for itself. As an author would say, plagiarism is the highest form of compliment...

#6 Hormonal Therapy in localized cancer. I know some doctors are doing it, but this is like rabbit hunting with a howitzer to me. Having been treated with surgery, radiation and hormonal therapy, I would NEVER recommend that anyone be frontline treated with HT for a localized prostate cancer. If side effects are so important as stated in #5, then stay away from the treatments that have the worst side effects.

#7 Scans. My opinion on this is ~ why not have them? If anyone chooses to be treated with virtually any treatment, you should have them before anyone touches you. Even though you likely won't detect tumors, you will get a baseline imaging that can be useful later. Additionally, any physiological anomalies may alter your treatment course. Additionally, some tumors do not emit PSA. It is not bad practice to have these imaging tests done and they are quite safe to do. Not doing so so that we don't "tie up the healthcare resources" sounds noble. But it's my cancer. I want as much information as possible.

#8 Limited Data...See #7

#9 ~ Screening. This is up to the individual not the doctor and that's where this decision belongs. I was not a high risk case and my doctor did it anyway. Then low and behold, my fathers PSA jumps after I was treated. Not everyone knows their risk factors. I believe that in ten years we will see the negative affects of reduced emphasis on screening in prostate cancer mortality statistics. There is no question that this type of screening saves lives. The new wave of thought seems to be that it doesn't save enough lives to warrant the testing or because of side effects of treatment. I will stay diligent in telling men that the issue is not the screening, it's education about the disease. Men need to be taught that they don't all have to do anything about certain cancers except monitor them. Knowledge is power. I feel that the new guidelines by organizations like the ACS are based more on the premise that ignorance is bliss...

Just my two cents...you can keep the change...

Peace.

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 4/11/2010 4:20 PM (GMT -6)   
I was going to stay out of this, but Casey59's rewrite (well done) has tempted me into the water.... If Tony's thoughts are worth two cents, mine are worth but a penny - and I'll leave it to each of you to decide whether it is worth the effort to bend down and pick it up off the sidewalk.

1. AS should be much more widely utilized than it currently is; the "overtreatment" phenomenon is real and disgraceful. I think there are two principal and related reasons for this. First, most men initially react to a diagnosis of PC with a deeply conditioned fear reflex, "Cancer! Get it out of me now!" I know I did. Second, most urologists are only too happy to feed that fear out of financial self-interest. I have watched with disgust as many of the leading urologists (some of whom are very good surgeons, by the way) and hospitals here in Houston fight hard against the new voices that favor the increased use of AS, pushing instead an agenda of "business as usual." Business as usual is highly profitable for them.

2. I can't add anything to Tony's great comments about diet - there is no "prostate cancer diet" but eating healthy is always a good idea (I type while eating Peanut M & M's).

3 & 4. I tend to agree with Tony. Time will tell. When asked, I personally advise men to make their own choice (of course), but I feel that surgery is still the gold standard if and when AS is not appropriate. I'm not yet comfortable that practitioners of some of the other methods, e.g., proton beam therapy, have been fully forthcoming in their cure rates and incidence of side effects. On the other hand, we are learning fast that it takes longer to become really proficient at PC surgery than we thought. In other words, surgery should still be the "default" treatment when treatment is necessary in the absence of a good argument to the contrary in an individual case, but there should be far fewer surgeries performed (see above) and the ones that are done should be done by a much smaller group of highly skilled surgeons with a national or at least regional clientele. The days of going for surgery to the local urologist with a good bedside manner should come to an end.

5. Tony is right - has anyone in the last 20 years or so really believed that side effects are not important (except in very rare cases)? Further, we do not really know much about the relative incidence of side effects across treatment modalities. The existing studies are inadequate, definitions and methodologies are non-standardized, and it is next to impossible to get most doctors to be honest about their personal track record for side effects.

6 - 8. I haven't thought these things through so as to have an opinion.

9. Screening - In theory I believe that each man should get information from his doctor (and from his own research) and then make his own decision as to whether to get tested. The practice is a lot more complicated, however. We are deluged by celebrities and public service programs urging us to get tested; out of self-interest doctors push testing (and then quick treatment where PC is found) so that we do not get unbiased input about screening from the medical community; and the conditioned reflex that a diagnosis of PC triggers is so very strong. Accordingly, given the built-in bias in favor of overtreatment, I am more sympathetic to the ACS's hesitation about screening than I would otherwise be. Again, that stance still bothers me in theory, but I have also seen first hand the greed and ignorance behind the current "test and treat" regime - and I believe that the ACS promulgated its new guidelines against this unspoken background. And to anticipate all of the "but in my case" responses - and to state the obvious - the people on this board are NOT a representative sample of all men with PC and are not a proper basis on which one should solely rely while formulating national healthcare policy.

Zen9

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 4/11/2010 6:40 PM (GMT -6)   
Casey,
Good job with putting it into words. I may not agree with everything you and Tony say, but the point of this post was to get them on the table and have patients think about these things and not just accept the conventional wisdom.
Tony, I wasn't talking about HT for localized PC, but for PC that has a high probability of being systemic using nomograms ect. I don't agree in giving HT for localized cases, only for very high risk cases. The PCRI also recommends combination treatments for high risk PC.
Disagree on scans, anything with only a 47% sensitivity is a waste of money that could be better spent elsewhere. It's also a signal that a doctor is practicing defensive medicine instead of using things that really work. Scans have their purpose only in high risk or high psa patients.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/11/2010 7:07 PM (GMT -6)   
John,
It's probably interesting to note that I discovered I had degenerative arthritis in my back and it was my bone scan that revealed it. Of course I have always had a bad back so getting the scans allows us to know what is normal for me versus spread of the disease. Still, I believe that you are one of the very few US citizens who flew to Holland for a now soon to be discontinued scan of your lymphatic system ~ all out of your pocket I believe. It was a good move to get more information. And I am glad I have the negative tests in my corner as well.

In any case, the debate about what is appropriate or not financially conflicts with what is best to do in addressing this disease with the best information available.

If what you were referring to about HT is whether it should be done adjuvant or neo-adjuvant with other treatments in higher risk cases that has long been accepted practice in cases of surgery(Stanford and Harvard studies) and radiation (RTOG9413). It is not new news. However, it also still lacks long term definitive proof of improved mortality. While I am betting on it in my case, I know that having taken on HT without a rise in PSA was an option I was willing to take on. SE's and all...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 4/11/2010 9:40 PM (GMT -6)   
Just to point out again that statistics can be skewed by anyone - especially omitting part of the wording of the study, the same Reynolds et al also found this to be true. So, things like Leak free/pad free must be clearly defined.

When Reynolds et al. applied less strict definitions of continence:

* At 24 months post-surgery, 677/1,005 (68 percent) of patients reported no pad use
* Also at 24 months post-surgery, 905/1,005 (90 percent) of patients reported either no pad use or the use of a security pad.

In other words, I have the very occasional drop of urine when I sneeze or pass gas. Does it affect my quality of life? Not at all, so while in the strictest sense, I am not LFPF, I easily fall into the 90% of the more liberal numbers.

I am also surprised at the large number of men who were NOT LFPF before surgery. But then, it is rarely discussed that older men simply lose continence as a matter of aging. So, throw that into the mix and things can get really drippy!
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!

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