Brother John (T)~you can decide if you would like to answer this thread~your journey and 10 yr story

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zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/14/2009 9:33 PM (GMT -6)   
All I will say is you have the first hand knowledge, experience and story of the value of multiple opinions and how it enlightened you to another level on PCa, that was (originally)not obvious to you or your first few docs. Maybe I am putting you on the spot and if so you can respectfully say I will pass on this little concept of shared experiences, wisdom and knowledge on PCa.
 
I would say your overall journey taking 10 yrs., and proving the experts weren't so much an expert is a revelation you usually can't find in books (atleast by examples). Did you say that 5 docs got it wrong over a long period of time, even with some of the standard testings??? You can pass on this or present the story. If I shouldn't ask I would delete this post, too. Meant to be an educational real world experience, that is in effect worth more than gold, this is why I posed the idea. We should analyze everything, the processes, the tests, the prognosis's, it is only life and death or quality of life that is in the balance, stuff more important than gold to us.
 
Respectfully- (Z)
Youth is wasted on the Young-(W.C. Fields)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 12/15/2009 1:41 AM (GMT -6)   
OK Zufus,
In 1999 a routine physical showed a psa of 4.4 and my GP sent me to a urologist. He gave me a free psa and it came in at 15. I asked him what it meant and he said it means you need a biopsy period, end of questions. I had a natural asperited biopsy, without an ultrasound and asked him why I wasn't getting an ultrasound. He said it wa cheaper and he was one of the few doctors left that did it the old way. The biopsy was negative and I looked for a new urologist. I found one that had a speciality in PC and travelled the world teaching other doctors how to give biopsies. He gave me a biopsy every year, all negative and my PSA kept rising with psa test every 3 months. I told him I was getting tired of this and needed a 2nd opinion; he said that there was a good plummer across the street and that he knew more about PC and seeing anothe doctor would be a waste of time. I went to UCLA on my own and the urologist said I had BPH and perscribed proscar. My PSA dropped from 16 to 8 and immediately started to rise again. More biopsies, more negatives. I finally said I want the name of the best guy around, because you're not telling me anything new. He referred me to a professor of urological cancer at UCI. Another biopsy, another negative, He said you don't have cancer but get an MRIS at UCSF just to be sure. My 1st urologist said he didn't know that they could MRI a prostate, but it couldn't hurt. Went to UCSF, negative, got anothe biopsy from the professor, negative. He said you don't have cancer but get a biopsy every year; it's just going to be a part of your life from now on. By this time it was like going to the dentist; no big deal.
In Oct 1999 I went to UCI for my 12th biopsy and discovered that the proff had moved to Anderson and his replacement from MSK would be doing the biopsy. I was a little pissed, but didn;t really have a choice. He was a young guy and could believe how many biopsies I had; he said that no one had that many. I told him to just look at my reocrds that were now over one inch high. He said if you have it I'll find it and gave me a 26 core biopsy. He called the next week and said I had a 2 positive G6 < 5% and said he could do surgery or I could wait an get another biopsy in 6 months. He said seeds would not be a good idea,but external radiation was an option. He said he had done 10 robotics and I said thanks but no thanks and made appointments with the three best surgeons in LA and went fishing in Mexico. I was relieved at the DX because I had finally found the reason for my PSA rise, it was now 40.
While I was in Mexico my wife had her annual check up with her oncologist and mentioned I was looking for a good surgeon. He said not to do anything until I got a 2nd opinion from a doctor that he knew that specialized in PC, Dr Scholz or his partner Dr Lam. I got an appointment in a week and sent him all my records.
When I walked into Dr Scholz's office he had been studying my pathology report and history. He threw up his hands and said " none of this makes any sense; your path report indicates indolant cancer that 60% of men your age have and will never hurt you; but your history indicates you have a very serious case of PC" He explained how psa worked and said that there was no way that what was found was the cause of my high psa. He said there were three possibilities, 1. PC had matastized into my lymphnodes. 2. I had a very large tumor that 12 biopsies and an MRIS had missed. 3. I had the largest case of psa leak in medical history. He said we are going to eliminate them one by one and find the cause. This was the 1st time in 10 years that I had talked to anyone that had the slightest inkling of what was going on. He gave me a PAP test, a PCA3 and a color doppler. He spotted something on the doppler and wanted me to see Dr Bahn who he said was much better than him using the equipment.
I told this to my UCI uro and he said color doppler won't work and that I should get another MRIS. I asked him if a psa of 40 was normal for a low core G6 and he just stammered and said he knew nothing about Dr Sholtz or Bahn and I should be seeing Scardino if I needed a 2nd opinion.
I got the Color Doppler from Bahn and he pointed out a spot in the transition zone and showed me the tracks of the previous biopsy and how it went around it or not deep enough to hit it. He also couldn't see anything in the spot the previous biopsy showed positive but biopsied it anyway.
The results were 3 hits in the transition zone, G4+3 and 3+4, nothing in the spot of my previous positive.
Dr Bahn explained because of the location of the tumor surgery would be a poor option, because of the high probability of positive margins or incontinence. After Dr Sholz saw the scans he said the exact same thing , but said that because of my high PSA there was a high probability of lymphnode involvement and I could have my entire body radiated as a precaution or go to Holland and get a combidex scan.
The scan came up clear so at that point were wer fairly certain that it was contained. By this time I had dumped my UCI doctor, because he had never heard of a combidex scan and was still recommending surgery without looking at any of the scans or knowing the tumor's location. Dr Barantz in Holland after looking at the MRI also said that surger was not a good option.
I think the point that Zufus was trying to get me to make is that most doctors that treat PC have know idea of how PC manifests itself. They only know what they were taught and use standard protocols and never think beyond them. As far as all my 5 doctors were concerned I had BPH or at worst a very low grade cancer. As soon as Scholz saw my history he knew I had PC and it wasn't what they had found on the biopsy.
There are a handful of doctors that are cutting edge and think beyond the established protocals; most of the others are just stumbling along when it comes to understanding PC.

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


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 12/15/2009 7:15 AM (GMT -6)   
John,
A frightening and enlightening saga. I have a couple of questions for you. You wrote "In 1999 a routine physical showed a psa of 4.4..." and "In Oct 1999 I went to UCI for my 12th biopsy" Is that true? You really had 12 biopsies in fewer than 10 months? I thought that even a DRE raised the PSA. What does the act of punching 12 holes do? Does that raise it as well? My surgery was scheduled 6 weeks after the biopsy to allow it to heal.
Did any of the docs do DREs or were the results all negative?
Has anyone here had a PSA done right after (1-2 weeks) a biopsy? I thought we had to wait.

Frightening...
Thank you for sharing and teaching.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
. 9/27 2 months: Still 3 pads per day.
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day Experimenting with Nyquil.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/15/2009 10:34 AM (GMT -6)   
John,

Admitedly, your PC journey is a complicated and involved story, very unique to your case, and when you explain it fully like above, its hard to believe you ever got an answer that made even remote sense.

But for most of the 200,000 new dx. a year probably are more along the regular scope of PC. At the end you said "most of the others are just stumbling along when it comes to understanding PC.". This was in reference to doctors in general in regards to PC.

I just don't think that is a fair statement to generalize. There are many well trained urologists and radiation oncologist, some that specialize in PC, and for the bulk of their patients, with "regular" cases of PC, they do quite well.

I am thankful you were able, after many years and much anixety, were able to find someone that thought beyond the "normal"and had a special insight into your unique case.

But I don't think that means that most doctors in the field don't know what they are doing. I think that sends the wrong signal to newly PC dx men, and promotes a lot of unesssesary second guessing. Just my opinion.

As a side note, there are just ultra rare cases. My former cancers (3x) porocarcinoma is that way. In 1999, after it came back a third time, I was one of only 38 known cases in American medical history, and less than 300 in the world. Most cancer info sources didn't even list it, the ACS had never heard of it. Since then, they have actually reduced the true number of known cases, because it so rare that it can be wrongly dx. I just happened to have a medical oncologist, a real genius, Dr. Larry Gluck, who happened to have a single other patient with porocarcinoma, a woman about 10 years older than me, and with me as patient, he was the worlds expert on this cancer. Unfortunately, the other woman died of the cancer a few years later, and I am 10 years post surgery/RT with it. My point: there are unsuual cases out there, and yours certainly was bizzare from end to end.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/15/2009 11:34 AM (GMT -6)   

Thanks for having the guts to answer this, if anyone wants to shoot the messenger, shoot me not John.  Kindly, disagree with you David this sends the right message to newbies as to what you are dealing with...it is a dragon and including the processes...double dragon. Johns story is not as unique as you are guessing. Back in 2002-2003 Dr. Strum has an article paper written called "what every doctor(and patient)on  PCa should know" (it is posted on Yananow and maybe here somewhere). 

 Many uro-docs and others did not have much of clues as to psa  level findings, psa velocity or psa doubling times as to know what they should as "experts" do and when or suggest biopsies, etc. to some patients. He wrote because he saw it was seriously lacking in the professional standards of the medical field. I doubt these few years later it is a quantum leap in total expertise's. Hey I could be wrong, not an expert either. Let's look at everything, whether you want to hear it or not is not the question.


Youth is wasted on the Young-(W.C. Fields)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/15/2009 12:26 PM (GMT -6)   
Zufas, no one needs to be shot, messenger or not. All knowledge is good, and with us PC guys, all knowledge is strength and the best way to overcome fears and uncertainties.

So is it being suggested that PC doctors, including the Radiation ones and Urologists are all wrong, and need to go back to school on PC?
That's my only point. I still detect "doctor bashing". A bad doctor needs to be called out, total agreement. But when does the patient know more than the doctor, and isn't that a dangerous precedent to start?

I think that the bulk of men here (at least in my length of time at HW) come here with Gleason 6/7 cases, they don't want to deal with cancer, they don't really like any of the options, and they want to get the "cancer thing" over with as quickly as practical, and put it behind them and move on with their lives.

The other group here, has advanced cases, agressiveness, re-lapses, complications, etc. So all info is good in my book. One size does not fit all.

We always hear about the "surgery bias" here at HW Prostate Cancer. I don't still see it as a bias, its just a fact of life, the bulk of primary treatment for PC is surgery, so most men go down that route.

I have been happy here the past few months to see other brothers go down the lesser traveled paths. Someone on Proton, someone that went through HIFU, and course, have picked up a few more Seed treatments.

That gives some variety, some choice to anyone newly dx. I have seen a change here, where more "vets" here are willing to reccomend Watchful Waiting, RT, other approaches other than the surgery they chose for themselves. That means the collective knowledge here is growing and spreading.

Been here for over 14 months myself, I only wish I knew back then, just 25% of what I have learned here, no telling what I would or would not have done different.

For all the men here that have had difficult dxs, and adverse reactions to various treatments and procedures, its sets a good example that all is not well all the time in Emerald City. Things do go wrong. Problems do pop up.

Those, myself included, that end up being the low percentile groups of problems, etc, are important to show how we work around the problems, how we move forward despite the set backs. This goes too for the men that have long term incontinence and ED, many creative and touch choices have been made there as well. My own thorn is well known here, and to talk about it to a stranger would make no sense, can't believe I am 13 months to the day from surgery, and I have now spent nearly 180 days on a total of 10 catheters, including my current run, which is day 76 in a row on the SP cath. I hate it, every day of it, but its my "reality" and I learn to adapt to the thing that I hate, and hope that at some point not only will I be free of the tube, but won''t need one again a few months later. According to my uro, I am in a tiny group of perhaps 4-5% of men that will have continual or continuous problems with bladder neck scarring and retention issues.

John's story or testimony is great, its different, its complicated, but it needs to be told. A lot can be learned from the approaches he took, the paths he faced, and the choices that were before him, and his own personal determination and tenacity not to give up till a reasonable and sound answer could be found. That is powerful.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 12/15/2009 1:11 PM (GMT -6)   
Jeff,
sorry, I meant UCI in 2009. I had hundreds of DREs, no one ever felt anything.
David,
To your point, I was generalizing but not by much. As Zufus pointed out Strum's article "What every doctor should know" Clearly points out that using psa deritives and psa kenetics and some 8th grade math a doctor can eaisly distinguish BPH from PSA. I had every red flag that Strum pointed out and no one caught it. The Doc at UCLA told me to plug my numbers into a program on line from Hopkins. I asked him if he could do it while I was there. He reluctantly agreed, and when he came back he said the program indicates you have PC, but I don't believe it. You have BPH and need Proscar.

How many patients on this forum have had their doctor calculate their expected psa? This is basic! You take the size of the prostate and multiply by .066. Then estimate the tumor size from the biopsy number of cores and % PC in the core, and using the gleason score determin how much psa the tumor is generating. Add them togeter and they should come close to your psa. If they don't
then something is wrong. If it is lower, you most likely have a serious varient. If it is a lot higher then your tumor is much larger than predicted or the psa is being created somewhere outside the gland.
If the numbers don't match then you have to keep looking until you can reconcile the numbers before you can make a treatment recommendation or even know where to look. Did your doctor ever do this?
This is pretty simple stuff and extremely important in arriving at the correct DX, but I'll bet than less than 20 doctors treating PC actually do this.
Yes, a lot of patients have very good outcomes without this, but how many are misdiagnosed, I would guess a lot due to the gleason upgrades and much larger tumors found during surgery. These can be easily estimated before hand. Even a blind squirrel can find an acorn. A 30% reoccurrance rate for local treatments is an unacceptable rate and I think this can be reduced with better diagonostic tools that are available but rarely used. This is the lesson I'm trying to get out to patients. I think it is border line criminal that doctors will order CT scans and bone scans and not even calculate expected PSA which takes about 3 minutes and will tell you much more. The fact that most doctors won't recommend color doppler or have no knowledge that something like a Combidex scan exists, says a lot for the state of PC treatment in our country.
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


Gmike
Regular Member


Date Joined Jan 2009
Total Posts : 48
   Posted 12/15/2009 1:53 PM (GMT -6)   
My family doctor and my urologist are both top notch docs, but I feel they swung and missed on my PCa. My PSA jumped from 2 to 4 in 2006. The family doc checked the free PSA (40%) and said nothing to worry about. Over the next 2 years my PSA increased to 5.01. My family doctor didn't seem worried but it didn't seem right to me. I was with my mother on a visit to her uro and asked him about my numbers. He said it may not be PCa but I should find out why it was high. His first biopsy in 2008 found an atypical core and the 2nd biopsy in 2009 found PCa. The uro said stage T1c.

I elected to be radiated by Dr. Dattoli in Sarasota. He did the color flow doppler. With the color flow as a guide he was able to feel something on my gland that no one else could. He said that was because of the position of the PCa. I'm still not clear on that and plan to question him more.

At any rate, I believe if I had had the color flow dopler first that I would have been treated a year earlier and reduced the chance of any PCa cells spreading.

Mike
Dx: 05/21/2009 (age 58)
1 core of 12 positive (10%), Gleason 6, Stage T1c, PSA 5.2 (21% Free)
Family history: Grandfather had PCa, died at age 79 of other causes, Father had PCa still living at age 80 cancer free (11 years)
07/15/2009 TUMT (Transurethral Microwave Therapy) for BPH
08/29/2009 Started on Casodex
10/5/2009 Color Flow Doppler at Dattoli upgraded stage to T3a, started Avodart
10/12/2009 to 11/20/2009 IMRT at Dattoli Clinic in Sarasota
12/03/2009 Brachytherapy performed by Dr. Dattoli

Post Edited (Gmike) : 12/15/2009 1:13:27 PM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/15/2009 1:53 PM (GMT -6)   
John, I didn;t know that formula you just gave. That is most interesting. One thing that bothered me when I was dx. Aug 2008, was that I was never staged before surgery, despite 3 biopsies. I asked my dr about that, and he basically said it didn't matter at that point in time, because the cancer was there. Shows how little I knew then, wasn't even a thought in my mind to dispute or question the answer.

On the bone scans/CT scans at dx, it really does seem like a big waste of time and money, virtually not going to show a thing. Wow, mine showed that I had a spot of arthritis in my hips/knees, didnt need a scan to tell me that.

I asked my own radiation oncologist about the value of color dopplers, and she pretty well blew it off that it was inconclusive and their facility would never have one. Have a feeling this is what you mean, might be all too typical an answer.
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/15/2009 8:55 PM (GMT -6)   
As John mentioned the psa mathematics formula thing is in Strum's book from years ago. It is kind of basic and our 'experts' should know this and more than us layperson guys like John, Tony, James, Billy or me and many of you guys that post here. So why don't they know about combidex (8 yrs old now), or color-doppler ultrasounds, why don't they know more about other drugs that the onco-docs are using on their patients or drugs used in other countries that are shown useful, why not tell a patient hey you could take casodex or whatever while you sweat bullets deciding on your own time if and when you want a major treatment  (why is that almost never offered to the patients??). I have always questioned the bias and agenda even on this, as I saw it first hand with 8+ opinions, not everyone had the agenda, some were much less bias or more open minded than many others. The most honest I met among these was Dr. Menon whom had to inform me that in my case you are not a candidate for surgery....numbers were that bad...Partin tables were even laughing. Turning away a sure paycheck of over  $25K  because he was actually thinking of the patient.
 
I will mention Andrew(Ohio-State's) bizarre situation, the (OSU)docs non-compassionate care: while he was weighing all his options for treatments and getting there opinions, his psa was doubling and over 100.oo  and no mention of taking casodex or anything he might be able to afford as care that was needed to slow it all down. One doc there told him he cannot afford hormone therapy (no insurance), yet no casodex, proscar, estradiol patch, des, nilandron, and other possible choices that are more affordable or cheap. This is from one of the leading cancer centers in the USA (that is what Andrew mentions). Cannot afford hormone therapy??? Compassionate nice message from a doc???  Hey look for one of Andrews prior posts, his email is found through clicking on his OhioState in blue (thingy). Talk to him yourself hear the scenarios, you don't have to accept my words on it, which are paraphrased and shortened, maybe even censored some. So, you wonder why some patients question the 'experts'????  Welcome to the jungle, twilight zone and limbo land of PCa....   Now you as especially a new patient can either decide to go with the status quo of what goes on out there or find out for yourselves what you see as the whole picture...is there alot of bias, ignorance, agenda, mistakes...or is it all really fine and wonderful and needs no improvement.  Is the total truth somewhere in between these???  Does truth exist in our culture anymore or is it less relevant today?
Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 12/15/2009 6:59:46 PM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/15/2009 9:06 PM (GMT -6)   
Zufas, I do not disagree with your logic on your last post, problem I see, is that going back to the every day Joe that gets PC, it comes into their lives, and they just want to get rid of the problem with the least amount of hassles and with whatever resources they are blessed to have in their lives. I think it is that simple for most men, and that's not meant to be any kind of a cut down.

When I first knew about PC for real, I could only equate it to my previous cancer bouts, sure didn't know how contrary it would turn out to be, and in my case, and the jury is still out of course, not even sure if I am winning at this point, despite all the good quality treatment I have had access to.

But in the end, most people just have to trust their doctors and a reasonable range of treatment, and then they go for it. I am not saying that is good or bad.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


Rolerbe
Regular Member


Date Joined Dec 2008
Total Posts : 235
   Posted 12/16/2009 12:35 AM (GMT -6)   
John's story does argue for finding at least one, perhaps more MD's that you are comfortable with. What does this mean?

1. They should take the time, and be able to answer your questions
2. They should be able to relate this information to you in a manner that makes sense to you at whatever 'level' of science-speak that may be
3. They should be honest enough to say "I don't know" when you hit the limits of their knowledge
4. They should be able to intelligently discuss the options available, know what options are cutting edge, speak intelligently about the plusses and minuses, known and unknowns of each of them.
5. They should be reasonably available to you for follow up questions and discussion
6. They should make you feel like they really value you as an individual, a person, a human being -- That they are treating you like they would treat their brother.

I only talked to a handful of MD's, but found one that fits the bill in New Haven CT (Thomas Martin, FWIW). I feel lucky.
51 YO
PSA at Dx: 8.2
DaVinci RALP: 10/31/08 -- Great MD in New Haven, CT
Negative margins, no extra-capsular involvement
One nerve spared
PSA at 0 for just over a year now.
 
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 12/16/2009 1:32 PM (GMT -6)   
Rolerbe,
You make some excellent points.
I think it is up to patients to become ecucated and ask the right questions.
It was pretty obvious that after talking to my Brachytherapist and Radologist oncologist I knew more about my PC and PC in general then they did. They were very good at what they did and I was hiring them to do a particular job and not to DX my PC. They wanted to follow a different protocol that was more severe and I convinced them I knew what I was doing and exactly what I wanted them to do. I couldn't have done this if I didn't educate myself. I looked at it as if I were a general contractor and they were just someone I hired to do a certain portion of a job, but I was controlling my treatment and they were just one portion of it. I would never ask a carpenter to do plumbing and I would never ask a radiologist to do a diagonosis; it's just not their skill set. So you also have to recognize the limitations of the doctors you are dealing with, and this is where I think most patients error.
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/16/2009 2:02 PM (GMT -6)   
I think it is an important point that the patient take responsibility for his own care. It is important to learn all you can about what is wrong with you. It is important that you clearly communicate to your doctor(s) exactly how you are feeling, responding, etc. Doctor's aren't mind readers. It is important to follow to the letter instructions and orders from your medical providers.

A patient shouldn't feel like a victim and this day and age, shouldn't be totally ignorant on what ails him. I know there will be legitimate exceptions to the last statement, but I think the point is the same.

And yes, the doctors, nurse, clinics, treatment centers, hospitals, test centers, etc, - they work for you, not the other way around, so a business approach to your level of treatment should be used. Poor care and unacceptable answers should not be over looked, and should be challenged by the patient.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
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 in place


jxmuldoon
Regular Member


Date Joined Nov 2009
Total Posts : 43
   Posted 12/16/2009 3:43 PM (GMT -6)   
The prospect of color doppler is intriguing. Still, I have asked this question before: Is there anything beyond anecdotal evidence for its superiority? I have spoken with a university radiologist who knows about it but dismiss it for prostate cases.

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 12/16/2009 6:32 PM (GMT -6)   
Here's a link to a thread on Cancer Forums about the topic of color Doppler.

http://cancerforums.net/viewtopic.php?p=61776
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009- 0.1, September 0.3, October back to 0.0, December 0.0. Thank you God!


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 12/16/2009 6:39 PM (GMT -6)   
JX,
There have been a few studies with mixed results; about 1/2 say no benefit and the others say better than normal ultrasound.
The issue with color doppler is that it is skill related; for a doctor using it a couple of times a week there would be little difference, but in the hands of an experienced skilled doctor it makes a huge difference. There are probably only 5 doctors in the US that have this skill level, coincidently they are mostly all cryosurgeons. I don't know why. It may be because they are more familiar with the anatomy of the prostate and know where to look for problems and what problem areas look like than a regular radiologist.
Fred Lee in Rochester MI
Duke Bahn in Ventura CA
Dr Chin In Los Angeles
Dr Dattoli in Sarasota Fla
Dr Sconti in NYC
Anacdotally, I have talked to about 12 individuals that have had Color Doppler from one of the above; in every case important information was discovered that no other tests had uncovered. I have never talked to anyone that wasn't glad they did it.
I believe in the case of Color Doppler art is much more important than science and this is why a lot of doctors shrug it off. It also explains the mixed results on studies. I would rather have a color doppler read by an artist than an MRIS read by a radiation intern as is done at many institutions. The downside of having one is cost and travel; the upside can save your life or save you a lot of grief.
There is a presentation by Dr Bahn on Dr Barkin's website, pcref.org. View the presentation and decide for yourself.
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


Rolerbe
Regular Member


Date Joined Dec 2008
Total Posts : 235
   Posted 12/17/2009 1:04 PM (GMT -6)   
John T said...
It was pretty obvious that after talking to my Brachytherapist and Radologist oncologist I knew more about my PC and PC in general then they did.

 

 
My first MD might very well have been good at the mechanics, but I happen to work as an engineer/scientist in the medical systems field, so it was probably true and an admittedly high bar to get over when he said "you probably understand all these statistical analyses better than me." 
 
In that instant I was done with that one.  shakehead
 

51 YO
PSA at Dx: 8.2
DaVinci RALP: 10/31/08 -- Great MD in New Haven, CT
Negative margins, no extra-capsular involvement
One nerve spared
PSA at 0 for just over a year now.
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/17/2009 3:31 PM (GMT -6)   
John, only 5 doctors in the entire US with the skills on the color doppler? No wonder many haven't heard of it, and most clinics and hospitals not using it. Even if it does all its claimed in regards to PC, there must be other reasons why its not being accepted mainstream.

I know its expensive, and requires a good learning skill you mentioned before, but if the results are that good, it would be more in use.

Kind of hard to reccomend something to Joe Public if only 5 doctors have the skill for it.

When I asked my rad. oncologist directly about it, what was her personal opinion in the use of color doppler for PC use and other cancer use, she said the jury was out, and that the readings were too subjective to be useful. When pushed, she said that the clinic I went through, part of Cancer Centers of Americal would never use that technology.

How do you reconcile the two views? I have no personal opinion on the matter, a tool is a tool to me.

David in C
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
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 in place


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 12/17/2009 4:42 PM (GMT -6)   
David,
I can't reconcile it; I can just give my own experiences and those of others. The Dattoli Cancer center uses it quite extensively. It seems like the doctors that are out of the mainstream, like Scholtz, Strum and Myers recommend it to their patients. It could be that they continue to have favorable experiences with it and, others that have never used it simply don't know about what it can do.
The cost of the equipment and the amount of time it takes to be proficient also may have a bearing on it's minimal use.
I heard Fred Lee once said that the large institutions with their professors and interns are always looking for something sexy, like MRI or the latest imaging technology, and color doppler is not that new or sexy so new interns don't want to learn it and institutions don't want to invest in it.
The 5 doctors I mentioned are the only ones I know about; there are surely some others around. The technology has also gotten better with Power Color Flow Doppler and most doctors may be familiar with the older technology.
I also heard from 3 different sources that urologists think that biopsies are their domain and will fight to keep it. They really don't like the idea of cryosurgeons or radiologists giving biopsies and are very unlikely to recommend getting a biopsy from someone outside their field. This is why referrrals for the CDU are usually made by oncologists and not urologists.
Dr Barantz in Holland said he was working on new imaging technology to assist in biopsies and he was having a very difficult time with the urological associations, because it meant that radiologists would be giving biopsies. It's sad about these turf wars as we the patients are the ones suffering.
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/17/2009 5:06 PM (GMT -6)   
Good answers John, I am honestly trying to learn about this angle in our PC journeys. I took the 5 doctors you listed as the literal total period, I have a bad habit of doing that sometimes, sorry.

When my rad. oncol. gave me her answer (post above) she wasn't being smug or arrogant about it. She seemed to know all about the technology, and she seems extremely well read. Despite the fact that she is a woman, she said most of her patients in her practice have always been men with PC. She does a lot of "seeding' and is real favorable to it use with the right patient criteria. And they do a lot of IMRT as primary and secondary treatments.

I got the same attitude from her, and two other doctors there when disucssing just in general, the use of Proton Beam technology, and was simply told their facility would never use it.

In a perfect world, I guess the patient would get to choose (within reason) the treatment method of their choice, and not be at the mercy of those holding our treatments in their hands. Wishful thinking I suppose.

Thanks for your answer. I have always been in love with doppler technology, even non-medical usage. Find it interesting.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
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 in place


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 12/17/2009 5:12 PM (GMT -6)   

My TRUS biopsy was done by a radiologist (not a urologist) in conjuction with an ultrasound tech. The radiologist handled the probe and needles while the tech ensured displays/equipment were what the radiologist wanted. This was in a local hospital lab.

My second TRUS was without biopsy. It was color, it was 3-D and I believe it was doppler as blood flow was discussed. This was part of a study I participated in before surgery. This was done at London Health Sciences Centre under probably the same study Zimmer had posted about...Dr. Chin's study. 

There were 2 nurses, 3 radiologists and me that were active participants. There were also a couple residents present. It's my understanding they were in later stages of evaluating color doppler US for dx purposes.

From my experience, radiologists have been actively involved in TRUS bioposies and TRUS doppler. 

 

Mike


-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 12/17/2009 8:22 PM (GMT -6)   
That may be true in Canada, but is certaintly not the case in the US. 99% of the biopsies are done by only one doctor and a nurse who handles the specimens and does the prep work.
Very few are done by radiologists, and then only using a Color Doppler.
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/17/2009 8:48 PM (GMT -6)   
I didn't know that radiationists ever did prostate biopsies in the US. It's more of a urlogical procedure here. Mine were all done by my uro surgeon along with 1 or 2 assistance, believe nurses.
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
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 in place


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 12/17/2009 9:33 PM (GMT -6)   

Color doppler was done by one radiologist... handling, inserting and guiding. The others were actively engaged in discussion with him, with some hands on. The nurses did the prep and the residents were in training. If not for the training or the study, I suspect it would have been just the primary radiologist and one nurse. 

The biopsy TRUS had one radiologist and a TRUS tech at a smaller local hospital. 

I believe standard protocol here is that biopsies are done in hospital clinics/labs, not in private practice settings. In my local hospital, a trained staff radiologist actually guided the probe and did the biopsy. That can be viewed in many ways and be argued in many ways. For me at the time, I was comfortable with a doctor that had extensive TRUS biopsy experience and was familiar with the imaging that was guiding the probe and biopsy needle.

That's just MHO. 

  


-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.

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