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Herophilus
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Date Joined Sep 2009
Total Posts : 664
   Posted 3/20/2010 9:34 AM (GMT -6)   

In another post we had some discussion about the general knowledge that primary care providers have as related to the general topic of prostate cancer. I also feel that an identifiable practice gap exist. At a minimum the primary care provider should be aware of the age adjusted PSA concept when evaluating the initial PSA screening. I’m not sure that the physician at that level needs comprehensive knowledge of, biopsy procedures, or Gleason scores, or open vs. robotic debate, as a urologist is going to be involved at that point. Just being able to look at that initial screening number and follow-up numbers with appropriate understanding is what I feel the responsibility should be for the primary care provider. In other words, have complete knowledge on when to get the patient to the next higher level of care. Not only with Prostate cancer but other diseases and syndromes. My gut feeling is that it is very difficult to be a general physician. Most certainly the specialist has a narrower knowledge need. “I only take care of heart valves, or I only take care of the wrist, or the foot or the walnut” In my theory, the individual at the general doctor office could be most important “specialist” of all.


Age 51, PSA 08/31/2009= 6.8, DRE Neg.
Biopsy 9/24/09 =10 of 12 positive. Gleason 6. involving up to 75%
da Vinci at Wash U, Barnes on 11/02/09
Modified Pathology, Gleason 4 + 3 = 7. Gleason 7 present throughout Prostate.  Negative surgical margins
4 of 4 periprostatic Lymph Nodes Negative, 10 of 10 pelvic Lymph Nodes Negative. Seminal Vesicles tumor free. No prostate extension
Post-op PSA 12/10/2009, Undetectable
12/12/2009, Pad Free and Started jogging.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 3/20/2010 9:56 AM (GMT -6)   
Agreed. My GP, a friend as well as a doctor- after 32 years with him- really did let me down, as far as reacting the the history of my steady increasing PSA levels. Knowing what we know here now, I should have been sent for biopsy 5 to 6 years earlier, when my levels where fluctuating between 3.5 and 4.8 each 6 months. However, inm his defense, and mine for not being an aware patient, I also had a complicating factor of long term BPE and prostatis which sorta diverted our attention to other possibilities. I was lucky that the cancer hadn't spread or escaped. Since my journey, I have tried to gently help educate him to things that are current now, and to let him see where 'WE' might have missed some early triggers. Hopefully the next guy who comes thru his office will get a closer look.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
Gonna Make Myself A Better Man: www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 374
   Posted 3/20/2010 10:16 AM (GMT -6)   
I am very fortunate to have a Primary Care physician with whom I had a 16 yr. history. He was very aware of importance of variance/rise in PSA levels, and not just whether you had an absolute number approaching the magical "4', but whether the movement upward over time was of consequence. He started to become wary went my PSA went into the "2's", and when it hit 3.1 (a .7 increase in 6 months) he sent me to a urologist. That urologist was ready to do a biopsy at that point, but we agreed to wait another 6 months. When that PSA hit 3.9, the history of the rise was enough of a red flag, and I had the biopsy done. It identified the existence of cancer early enough to give me time to research and decide, but more importantly, I believe, identified it before it became more problematic than it already was
I attribute a huge % of my (to date) excellent outcome to my PC physician's knowledge and vigilance.
 
Arnie in DE
Age 56 (biopsy & surgery)
PSA at Diagnosis-3.9
Biposy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3)
 
Surgery 1/26/09-DaVinci Robotic Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA
Dr. David Lee
 
Pathology Report- Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, Gleason 7 (3+4), Stage T2C, NO MX, Prostate 61.8 grams, gland involvement 2-10%
 
Catheter removed after 8 days, totally dry at 3 months. ED issues continue, Viagra (via ADC) nightly (100mgs), VED use in earnest at 6 months. "Ball Park Frank" plumping at this point......ED at 10 months continues to improve, albeit slowly. Continued daily use of 100mg Viagra (ADC). Discontinued pump use; manual stimulation to varying states of erections; achieved penetratable erection on a couple of occasions----At 13 months, nocturnal erections are frequent. Still taking 100mg of ADC Viagra nightly. Libido still in the dumper, but working on it with doctors.
3 month PSA--<0.1
6 month PSA--<0.1
10 month PSA--<0.1
13 monthPSA--<0.1


daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 3/20/2010 11:00 AM (GMT -6)   
Preaching to the choir I'm sure but given my recent experience (see sig') I'll agree trusting a PCP to know/inform us of PSA results isn't wise. I'm on a mission to educate all my 40+ year old friends to take matters into their own hands so to speak and become educated on tests, demand the Dr send all results to them high or low, and know what the results mean. Several have gotten PSA tests based on my urging and one discovered his is at 4.1

A GP can at best only know a little bit about everything, and everything about nothing.
Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP by Dr Sejal Quale Durango CO, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples
4+4 with tertiary 5
Invasion of left Seminal vesicle
9 lymph nodes taken all negative
Tumor staging pT3b NO MX


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1132
   Posted 3/20/2010 11:21 AM (GMT -6)   
I feel my GP let me down but also is responsible for reminding me about my PSA test. I went to the doctor and followed up with an appointment for the gp to go over the results. When I went into his office, he said he had forgotten to order a PSA test. After the test, about a week later, I received a letter from the doctor saying my PSA went from 2.6 to 3.5. He said not to worry I probably had an infection and prescribed 30 days of antibiotics. He said, the PSA was still in the normal range, under 4. When I was re-tested, the PSA dropped to 2.0. I kept asking how it could go below the prior year PSA. The doctor said not to worry, the lower the better. He did caution that I sould be re-tested in 6 months. I waited a couple of months and went to another doctor and the PSA was back to 3.8. I followed up with a urologist and he told me about the rapid increase from year to year is not good and said a person of my age should have a PSA of 1 or under. The rest is history. I had surgery and approaching 2 years and so far I am one of the forturnate ones but worry a lot about cancer. As everyone told me, that god you have "prostate" cancer, isn't that the good one. When will people learn there is NO good cancer.
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
20 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue but getting better


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 3/20/2010 12:21 PM (GMT -6)   
This article from Dr Strum, "What every doctor that treats male patients should know" is a must read for all doctors and patients.
 
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


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/20/2010 1:49 PM (GMT -6)   
Good reference John and that information has been made public back around 2003-5 era, cause I witnessed when Dr. Strum and Donna Pagliano put that out and I believe Donna P. sent me an email on it and it was put onto yananow.net not long after as Terry Herbert was witness to the same, Terry and I and some others got to know Donna P., she is (co-author of the book- A Primer on Prostate Cancer). Dr. Strum recognized the lack of doctors knowledge on basic PCa things, many years ago, he is way ahead of the curve in comparison to the others treating PCa. It is a great read for us patients as to knowing about psa velocity, doubling times, and  significance of them and other things and then finding out and knowing that your typical uro-doc is far from the expert he should have been or is.


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


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 3/20/2010 3:44 PM (GMT -6)   
I must say my GP was on pointand was the one that said you need to make an appointment with a Uro, and bring him you Psa #s. Unfortunately He was right!
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/20/2010 7:13 PM (GMT -6)   
It was my GP of 13 plus years that got me taking PSA tests starting at age 50, and it was him that sent me packing to my Uro the first reading over 4.0. Unfortanately, he had no knowledge of the impact of PSA velocity, simply went by the old school chart showing .00 to 4.00 as being "normal". Since my case has come up, he has learned about that ,and some other PC related matters from both my Uro and Radiation Oncologist.
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, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 664
   Posted 3/20/2010 7:34 PM (GMT -6)   

It is obvious just from this small response that a knowledge gap does exist. Quite frankly Scarlet there is no such thing as a normal PSA. That is the message that we need to promote to all the PCP’s. I’m not being critical of them they are probably doing what was / is considered prudent. “Oh you have a 3 PSA which is within normal range”. Understandable statement to patient age 68 with BPH, not really cool if the patient is 45. So if the disease is going to cause a problem in one in 6 or 8 of the men in this nation on the average how do we go about getting this message out? How about bumper sticker….Got PSA...Got CANCER!!

I realize that the bumper sticker is not accurate... however this community has some very passionate members…suggestions anyone?

Hero


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 3/21/2010 5:40 AM (GMT -6)   
Organizations dealing with public health are pressuring doctors to be able to have "informed discussions" with patients about PSA tests. This will lead to doctors (PCP's, who most typically administer ongoing PSA tests) to become better informed themselves.

Many outstanding PCPs are already well informed, as we've seen in some of the responses, and don't need to change their behaviors. However, as we've also seen, the new guidelines for "informed discussions" are targetted at a smaller number of PCPs who are not keeping themselves appropriately current.

rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1132
   Posted 3/21/2010 9:08 AM (GMT -6)   
One thing I should have done was be more informed. My brother was diagnosed with PC 2 years before I was. I went to my PCP and he told me my PSA was under 4 so no need to worry. I should have been on a website like this one and learned more about the PSA test and the percentage increase I would have PC since my brother had PC. Since I have the insurance, I should have gone to a urologist but felt content with only going to one doctor before diagnosis. Isn't hindsight perfect. Now, we can share our experiences with others so they will be more informed then we were.
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
20 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue but getting better


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/21/2010 10:11 AM (GMT -6)   
Hero,

Think your idea is on the right track. It would help if the PCP/GP had something to go on, when they order up blood work during an exam or physical that didn't come pre-printed from the past indicating that PSA (if checked off) simply didn't show a "Normal" range of .0 to 4.0.

Because speaking as a patient, totally igrnorant and oblivious to PC in the first place, I had no reason to question or second guess anything as my PSA began rising rapidly while it was still under the "4.0" mark. To me, it was just one of about 10 sets of numbers on a sheet of info they gave me every year.

That part needs to be changed in the medical system/community somehow. Perhaps it is already so in the larger and more advanced medical communities, would be nice to think so.

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, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 3/21/2010 12:17 PM (GMT -6)   
Casey,
You are probably right, my PCP got it right and kept referring me to urologists because of my high psa. The expert urologists, definately had a knowledge gap in the Dxing of PC. They had no idea of other testing methods that were available, such as PCA3, color doppler, MRIS, Combidex. Their knowledge of psa kenetics and dirivatives was lacking. After reading Dr Strum's book, I had every red flag there was pointing to the fact that I had a serious PC and was continually told that I had BPH.
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


Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 3/21/2010 4:20 PM (GMT -6)   
I have an awesome GP and the only normal psa number he referred to was 1, and he insisted we check psa every year. When it spiked, he was all over it per testing with anti-biotics, then off, then spiked again and off he sent me to head of urology at Georgetown. My gp knew the protocols cold. I was among the fortunate in that regard as it sounds like there are doctors who don't get it.
Age 54
PSA 8/2009 5.6 Gleason 8
DaVinci surgery 11/2009
Pathology - totally contained in margins -one bundle spared
PSA now undetectable at < .05
Continance: 1 pad and almost normal
Doing 3 P's and now using trimix

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