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Englishteacher
Regular Member


Date Joined Jan 2010
Total Posts : 28
   Posted 3/29/2010 4:34 PM (GMT -6)   
I'm 5 months out from robotic prost. Healing has been frustratingly slow but some positive signs, abdominal discomfort finally slowing. One Depends a day which is an improvement, leakage is unpredictable though, sometimes stress from exercise sometimes just a random squirt for reasons I don't quite get. Beginning to get energy back with the help of springtime.
Anyway. I'm healing away 4 months in, my 3 mo. PSA is undetectable, my GP and my urologist/surgeon both say keep the PSA tests comin' every three mos. and we'll monitor it. Both recommended establishing a relationship with an oncologist just so if there is a recurrence we'll be ready to go as some of my stats suggest recurrence somewhere down the road. So I visit the oncologist. We have a nice long talk. He's looking at all the same data my other docs have. He notes the possibility for recurrance but says no treatment now, go home and continue to heal and we'll move ahead as everyone thus far agrees. He remarks that my case has some interesting elements, low PSA I think in particular and asks if I would mind if he discussed my case with other docs in the field something he says is often done. I agree. The next day I get a call that that meeting took place with not my oncol., but his colleague, not my surgeon, but his colleague and a radiologist whom I had met and who had examined me way earlier on as I was considering treatment options. He says, that I should have radiation treatments of some kind. My oncologist agrees to pass that thinking along, but thinks a bone scan is in order to make sure radiation at this point would be the appropriate approach. The nurse navigator,a kind of coordinator, and who has been of great help through out all this calls and says, the oncologist says let's throw in a CT scan for good measure on the same day just to make sure everything is everything. I had a CT just before surgery and it was neg. I'd rather do one thing at a time and do the bone scan get that over with then later perhaps another CT scan if we must. My take is that the radiologist who came on very strong on my first meeting with him early on merely wants to do some more radiology treatment and somehow and these guys are kind of going along for the ride. These guys all have the same data. How did we go from 3 docs saying go home and heal and we'll monitor PSA, to an upcoming bone scan, CT scan and perhaps radiation? It kind of has my head spinning. The nurse navigator says the early stages of treatment and discernment can be this way. Is this true? any red flags here that I'm missing. Would love some takes from the experienced, knowledgeable and savvy folks in this group. I find it most helpful.
60 year old, sometimes happy, sometimes grumpy guy
Robotic RP 11/09
Otherwise good health
Gleason 8, T3a
Margins uninvolved
extraprostatic extension present,
Seminal vesticle invasion: absent
PSA 1/25/10 undetectable
Great support, wife, family, employer


logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 5818
   Posted 3/29/2010 11:55 PM (GMT 0)   
If it wasn't for the EPE, it would be a no brainer FOR ME!! not do it. With that said I would get an ultra sensitive psa test, if its @ or above .05, I,d go with adjuvant rad
age 66 First psa 4/17/09 psa 8.3, 7/27/09 psa 8.1
8/12/09 biopsy 6 out of 12 pos 2-70%, rest <5% 3+3
10/19/09 open rrp U of W Medical Center, left bundle spared
10/30/09 catheter out. continent from the jump.
pathology- prostate confined, only thing positive was the report.everything else negative
9% of prostate affected. gleason 3+4, I suppose thats a negative
After reading pathology myself, gleason was 3+4 with tertiary 5, 2-3 foci That is a negative, but I am a positive !!
Ed an issue but keeping the blood flowing with the osbon pump
8 week psa 0,o

Hypocrisy is vice's homage to Virtue


BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 3/29/2010 6:03 PM (GMT -6)   
Hi Englishteacher, I am also a gleason 8, but was a T2c. My surgeon told me post surgery that if my tumor was not capsule contained that he would advise additional treatment. We didn't discuss what that would be. From what I have read, additional treatment is often taken with a gleason 8-10 if there is any indication that the cancer may have gotten loose. The radiologists recommendation does not seem inappropriate. Also, waiting for a rise in PSA is also a reasonable approach. I don't think you are getting bad advice from either. Perhaps other here more experienced folks here can advise more than I.
Dx with PC Dec 2008, PSA 3.4, Biopsy: T1c, Geason 7

Robotic Surgery March 2009 Hartford Hospital
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive
nerves spared, no negitive side effects of surgery

One night in hospital, back to work in 3 weeks

psa Junl 09 <.01
psa Oct 09 <.01
psa Jan 10 .07 re-test one week later .05


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 3/30/2010 8:18 AM (GMT -6)   
When are you due your next PSA test if you don't do anything?

Yes, your staging was T3 but your PSA is "undetectable" at present indicating there is nothing in you at the moment producing PSA, which sounds to me like it is worth waiting for another test to see if there is any change at that time.
Alfred

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 3/30/2010 9:42 AM (GMT -6)   
englishteacher,
I'm a Gleason 8 and also had EPE. A year after robotic surgery I'm still in the zero club. I wouldn't rush into RT just yet. Monitor you PSA with the ultra sensitive assay every 3 months. If the PSA starts rising then you van go to the next step.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11.5 months test 1/21/10 result 0.004


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 3/30/2010 9:57 AM (GMT -6)   
It appears as tho the current thinking on this is changing. While there are studies that suggest adjuvant radiation gives a better response if begun within 4 months of surgery , IF you have a reoccurence, many doctors are now advising a wait until PSA rises approach.

So some of it may be older thinking, some of it may be CYA, and some may be a slow day at the clinic, altho I am not a proponent of that type of thinking, but could not refyte the argument either.

As a G9 with an EPE, I am in the same leaky boat. Because of incontinence and ED, I have decided to go the wait for rise in PSA route.

Good luck and welcome to HW.
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


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4226
   Posted 3/30/2010 10:17 AM (GMT -6)   
English teacher,
I see a couple of red flags. 1st a bone scan with your psa numbers would show nothing; and your doctors know this. Also there is no way your Ct scan would change in a couple of months; again it would also show nothing. It sure soulds like they are trying to get extra money from your treatments. As a noted doctor once said" Few men die from prostate cancer; but many are making quite a good living from it." This seems to be the case here.
The appropriate course of action is to wait until the psa makes a move as 50% of positive margins never progress to anything.
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 : 25380
   Posted 3/30/2010 10:38 AM (GMT -6)   
I too think, any more of those tests would be pointless and meaningless at this phase. If it were me, I would wait until there was some PSA evidence of recurrance. As John said above, there's also a 50% chance it won't happen. One of the troubles of doing adjuvant radiation, is that it is often done close to surgery, and in many cases, the patient may or may not be continent, or may be at the worse phase of dealing with ED. Radiation is a serious next step, for me, I waited until it was proved beyond a shadow of doubt that I did indeed have recurrance.

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


Englishteacher
Regular Member


Date Joined Jan 2010
Total Posts : 28
   Posted 4/8/2010 1:38 PM (GMT -6)   
Thanks for your thoughts. My instincts agree with much of what you say here. I had the bone scan two days ago just to have another tool. There was no recomendation for one presurgery, although I did have a CT scan-neg.
Waiting nervously and impatiently for the bone scan results, a born worrier, I got it from my mother's side, my PSA at surgery was 2.5 and I get a Gleason 8. could bone metastasis also defy PSA, albeit undetectable(at least at 3 mos. out.)?
60 year old, sometimes happy, sometimes grumpy guy
Robotic RP 11/09
Otherwise good health
Gleason 8, T3a
Margins uninvolved
extraprostatic extension present,
Seminal vesticle invasion: absent
PSA 1/25/10 undetectable
Great support, wife, family, employer


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/8/2010 2:10 PM (GMT -6)   
Find more righteous docs, alot of good ol boy networking goes on in the medical world and other fields, kind of hey let's like spread the insurance money or your money around, no cure for you perhaps, cures their greed temporarily while waiting for the next gig.(it is fun to be gig or comparable to an automobile for repairs). I am so mean... I would tell you flat out your scan this early on is a total waste of time even if I was a doc, cause that's how I am. Those collaborators are working in their best interests.... maybe go see a real PCa oncologist like Scholz, Strum, Meyers...guys that have seen every scenario basically and know all sides of the game of PCa and treatments. See what they say and compare for yourself.
 
It is never ending surgery 1st, then Oh yes salvage radiation, and Oh you failed that too, now drug protocols, then let's add chemo and ad infinitum till you die. Without offering the patient "all possible choices" and overall informing them of this type of journey scenario..happens often in PCa..it is not the only pssible routes, fyi. But they probably won't mention those other possible scenarios, choices and especially if they are non-profittable...does that resonate! You don't have to believe me, but alway question everything in PCa. Did your docs do tests like: PAP, pyrilinks and other markers that might be useful to test on, doubt it. But the scan is necessary right now???

Don't hate me, dislike the system and approaches...I am only a messenger..who makes no money and probably finds no friends (takes a few arrows too)...but love to see guys like yourself get justice and fairness and straight talk.

I wish you fair treatment in whatever happens.


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


1218davinci
New Member


Date Joined Apr 2010
Total Posts : 10
   Posted 4/13/2010 10:23 PM (GMT -6)   
Would you please let me know what kind abdominal discomfort do you have?  I have Davincy about 4 months now and still have mild discomfort pain around belly  due to thi pain and I have asked my family doctor to do all the tests, Xray, CT scan, MRI  and all normal - hope this pain will gone soon? very worry - PSA after surgery is Zero - gleason score before surgery is 3+3=6 localize - 1 dry pad per day - No ED problem
 
Thanks
 
1218davinci
 
 
Englishteacher said...
I'm 5 months out from robotic prost. Healing has been frustratingly slow but some positive signs, abdominal discomfort finally slowing. One Depends a day which is an improvement, leakage is unpredictable though, sometimes stress from exercise sometimes just a random squirt for reasons I don't quite get. Beginning to get energy back with the help of springtime.
Anyway. I'm healing away 4 months in, my 3 mo. PSA is undetectable, my GP and my urologist/surgeon both say keep the PSA tests comin' every three mos. and we'll monitor it. Both recommended establishing a relationship with an oncologist just so if there is a recurrence we'll be ready to go as some of my stats suggest recurrence somewhere down the road. So I visit the oncologist. We have a nice long talk. He's looking at all the same data my other docs have. He notes the possibility for recurrance but says no treatment now, go home and continue to heal and we'll move ahead as everyone thus far agrees. He remarks that my case has some interesting elements, low PSA I think in particular and asks if I would mind if he discussed my case with other docs in the field something he says is often done. I agree. The next day I get a call that that meeting took place with not my oncol., but his colleague, not my surgeon, but his colleague and a radiologist whom I had met and who had examined me way earlier on as I was considering treatment options. He says, that I should have radiation treatments of some kind. My oncologist agrees to pass that thinking along, but thinks a bone scan is in order to make sure radiation at this point would be the appropriate approach. The nurse navigator,a kind of coordinator, and who has been of great help through out all this calls and says, the oncologist says let's throw in a CT scan for good measure on the same day just to make sure everything is everything. I had a CT just before surgery and it was neg. I'd rather do one thing at a time and do the bone scan get that over with then later perhaps another CT scan if we must. My take is that the radiologist who came on very strong on my first meeting with him early on merely wants to do some more radiology treatment and somehow and these guys are kind of going along for the ride. These guys all have the same data. How did we go from 3 docs saying go home and heal and we'll monitor PSA, to an upcoming bone scan, CT scan and perhaps radiation? It kind of has my head spinning. The nurse navigator says the early stages of treatment and discernment can be this way. Is this true? any red flags here that I'm missing. Would love some takes from the experienced, knowledgeable and savvy folks in this group. I find it most helpful.

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