6mo post op visit with uro kind of scary

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Englishteacher
Regular Member


Date Joined Jan 2010
Total Posts : 28
   Posted 4/23/2010 2:31 PM (GMT -6)   
Had my six month follow up visit just today. My PSA was 3 mo. <1; 6 mo. .1 My doctor believes we should do radiation ASAP and called the .1 PSA not recurrence but persistence. He explained this was an opportunity for a cure if we act before too long. Frankly he made the consequences of any inaction pretty grim sounding. Just had bone scan, neg;CT, neg.
I thought I've read in various places that docs track the PSA a little longer before recommending radiation and/ or further treatment. I'm aware that Adj. radiation is not necessarily successful either.
I'm once again looking for advice from those who have been around the block here.
I'm still in slow recovery from my surgery, not fully continent or potent and don't relish 8 more wks of misery. How unpleasant is it? I've spoken to the rad onc. and he has recommended this treatment as well.
The urologist predicts recurrence and says hormone treatment is misery compared with radiation and as I said made the future with recurrence and hormone treatment sound pretty gloomy as well as perhaps brief- compared to what this radiation could do for me. You you believe he may be overstating things at all?
I've studied the nomograms and they tell a little different prediction story than what my uro told me today. Once again on this journey I find myself confused and unsure. The advice here has been very valuable and much appreciated.
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 <.1
4/12/10 0.1
Great support, wife, family, employer


Sharp18
Regular Member


Date Joined Mar 2010
Total Posts : 78
   Posted 4/23/2010 2:33 PM (GMT -6)   
I would recommend to get a 2nd opinion...

pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 437
   Posted 4/23/2010 3:06 PM (GMT -6)   
I am not a doctor or an expert...   That said,   I see with your numbers that you were a Gleason 8 which is an agressive form of PCa and maybe one of the reasons your doctor is so concerned.
 
If it was me,  I would most likely request a high senstivity PSA test as a 0.1 could be anywhere from 0.06 to 0.14.     As you can see from my numbers,  I had a rise in PSA over a 3 year period and the higher senstivity test enables a better tracking of rising PSA.    My Gleason was only a 6,   but the fact that I had some focal margins and 3 consecutive rises in PSA,  I was recommended and opted for salvage radiation (SRT) when my PSA level was 0.13  as the numbers suggested reccurence in the prostate bed and SRT was a viable treatment.
 
You can research more here and in the literature and seek another professional opinion, especially with the more sensitive PSA result and go from there.  But with a Gleason 8,  I am not sure of time constraints.  Professionals know best there.  I had time due to being a Gleason 6.   But you certainly have time for another opinion.
 
I can say that the SRT treatments had little side effects for me,  but they do vary greatly from patient to patient.
 
Sorry to hear of your results,  but this dang PCa is a beast.   Fortuneately,  you still have treatment options to consider.
 
pasayten
After 3-4 years of annual PSA 4-6, biopsy recommended
3/13/2007 - 12 point biopsy - Left 0/6  Right 1/6 Gleason 3+3 T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Final pathology of Gleason 6  T2c Nx Mx, approx 20% of prostate involved, positive margin, but only at 2 focal points.  
6/28/2007 9 weeks incontinance... Overnite, went from 4-6 soaked pads a day from prev 8 weeks to 2 barely wet pads a day.
7/12/2007 11 weeks post-op  Minimal leakage...  one small pad a day
7/18/2007 First Post-Op PSA...  0.01 !!! 
9/10/2007 Pad free and ED at 75% with 100mg Viagra generic
6/26/2008 2nd Post-OP PSA at 14 months...  0.02 
12/2/2008 3rd Post-OP PSA at 20 months...   0.03
10/30/2009 4th Post-OP PSA at 31 months...   0.13 (moved and diff lab)
11/3/2009 Retest at my original lab...  0.11  (followup with Doc sched 11/10)
11/10/2009 Discussion indicated biochemical reccurrence and need for salvage radiation treatment. 
1/21/2010 Another PSA test at 34 months...  0.14
1/26/2010 IMRT Salvage Radiation Treatment started
                  32 sessions for 64 gys total.
3/12/2010 Finished 32 sessions...  No side effects to date except a little
tiredness.  Slight changes in bowel movements the last week...  
4/8/2010  Pretty much all side effects (were minimal) are gone now and energy has returned.  Now just wait for the upcoming PSA test.
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 4/23/2010 3:07 PM (GMT -6)   
English, yours is a good question and concerned, and like most all things PC, there is never one straight sure answer.

From looking at your posted stats, you being a confirmed Stage III and a Gleason 8, your dr's urgency for further treatment might be considered typical.

You are quite right, adj radiation or even salvage radiation like a bunch of us have gone through, is no guarranty by any means to keep the cancer in remission. It is kind of hit and miss, and the overall odds for it working are less than 50% at best. With some stats that can drop to 20-40% range of working long term. I think all of us in that boat, had to come to our own conclusion of do it or not do it, and even with the not so great percentages, many, myself included, feel its worth a shot, being the last curative approach available right now to a surgery that didn't contain all the cancer.

In your case, some dr's would call for immediate adj. radiation, as a pre-emptive strike. Other doctors, would still want to wait for 3 PSA's exceeding .10 in an upward spiral, before doing any further action.

I agree with the above poster, this is a great time for a second and even third opinion if possible. You are correct too, there is no normal scan that's going to show up anything at this point.

Good luck and please keep your journey posted.

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, 4/8 .04, next one:  July
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- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 697
   Posted 4/23/2010 3:21 PM (GMT -6)   
Having been through surgery and radiation, and having read and thought a lot about it, I think Purgatory (David) sums things up very well.
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1
http://pcabefore50.blogspot.com


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6946
   Posted 4/23/2010 4:12 PM (GMT -6)   
English,
I am just now 2 treatments into IGRT after DaVinci 10/2009. I was a bit worse, G 4+5, lots of positive margins.
My Urologist/surgeon was insistent that I do the followup IGRT. He was not interested in waiting for PSA to rise, as he felt that might be too late.

I won't ever know if the radiation was needed or not - that is the real logic problem. It may have negative side effects that I will know about. All that has to be balanced with discovering the cancer has become incurable.

And I do not consider myself a candidate for HT. I'll deal with the rest, one way or another.

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 4/23/2010 4:43 PM (GMT -6)   
English,

We have similar tumor stats and my Urologist was talking about the probability of SRT as soon as the post op' path report came in. She felt with the "cat being out of the bag" my chances were better if we hit it hard and fast.

I will get a 2nd (and possibly 3rd) opinion but her logic makes sense to me, try to kill it while it's small and hopefully confined to the prostate bed.

If only this darn disease came with an instruction manual.
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 in Durango CO by Dr Sejal Quale and Shandra Wilson, 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.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 4/23/2010 4:55 PM (GMT -6)   
dave, even if PC came with an instruction guide or rule book, I assure you it would like like a rug, cheat, steal, and do anything it wanted to to try to win. PC does not play fair, and can be very inconsistent in how it reacts from guy to guy, that's one reason that you see so many variations of treatment results and reactions posted here.
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, 4/8 .04, next one:  July
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- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/23/2010 5:09 PM (GMT -6)   
Go see an excellent PCa oncologist like John T. did, and compare after that evaluation as to what that assessment is and then see whom is serving your best interests. Radiation is still a crap shoot, maybe worth doing but doc is saying "cure"?, I am always leary of overselling and have seen it on many patients over the years. Ask your doc if he minds you getting your own second opinion, no referrals or friends of his.....then checkout his reaction!
Youth is wasted on the Young-(W.C. Fields)


Red Nighthawk
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 4/23/2010 5:25 PM (GMT -6)   
English, if you do need radiation, I suppose the good news is that the PCa is still in the same general area of the prostate and that is probably why your doctor used the word 'cure'. It's most probably worse to have a PSA rise years later after surgery. I'm sorry you have to go through this. Please keep us informed about your journey.

Warmest regards,

john
Age: 62
Pre-op PSA: 4.1
Post-op pathology:
Gleason grade: 3+4=7, present in both lobes, at least 1.1 cm, and occupying less than 5% of prostate by volume. pT2c NX MX
No lymphatic/vascular invasion present.
Seminal vesicles and extraprostatic soft tissue free of tumor.
Inked margins are free of tumor.
High grade prostatic intraepithelial neoplasia is present
Robotic RP: Sept. 15th, 2009 1 day in hospital, cath out on 9th day
Post-op PSA: at 4 weeks ---> .04
three months -> .03 (the trend is my friend!)
ED: Improvement is very slow but there are positive signs. Doc has NOT put me on ED drugs yet.
One pad/day for the first six weeks. Two pairs of underpants, just to play it safe, for a few months.
Surgery: Dr. Jim Hu. Brigham & Women's Hospital, Boston

Post Edited (Red Nighthawk) : 4/23/2010 6:21:16 PM (GMT-6)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4223
   Posted 4/23/2010 5:25 PM (GMT -6)   
what do the nonograms say?
what does your doctor mean when he thinks it is persistant? What makes him think so? is it the positive margin or did he leave more prostate tissue? I would try to get some answers to these questions and also get a 2nd opinion before you make a decision.
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


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 4/23/2010 7:07 PM (GMT -6)   
English,
Zufus' suggestion is right on, Find a good prostate cancer onco and and also have your pathology report reviewed. By the way, did you have the nerve bundles preserved?
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 5 months
2 months 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 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 4/23/2010 10:37 PM (GMT -6)   
English, I can't give you any advice on this, but I can tell you a good friend had his PSA pop up and his Uro told him the surgery had knocked the PCa down, now radiation was needed to knock it out. He did that and his PSA has been zero ever since. And that was 18 years ago.

May it work out as well for you.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02
PSA on April 9 less than 0.02 
 
  


Englishteacher
Regular Member


Date Joined Jan 2010
Total Posts : 28
   Posted 4/24/2010 2:53 PM (GMT -6)   
Thanks for the feedback. Actually, the hospital where I had my surgery has a prostate cancer staffing every other Tuesday morning, where an oncologist, urologist, radio onc., and a prostate nurse navigator who seems to serve as coordinator/facilitator review current prostate cases(with the patient's consent) and put their heads together for various input and thoughts and recommendations. My primary care doc for 25 years will be attending as well next Tuesday's where my case will be discussed. I will look to the wisdom of that collective group to help give me some direction. I don't know if such a group is common practice in all hospitals, but It certainly sounds like such meetings can be of value.
To answer another question, one nerve bundle was spared in surgery(although, thus far you'd never know it.
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 <.1
4/12/10 0.1
Great support, wife, family, employer

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