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daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 3/16/2010 12:25 PM (GMT -6)   
Hi all,
Found this forum after my initial diagnosis, thanks for all the info. Gotta say reading the posts swings me from optimism to despair, I guess this truly is an every case is different disease.


Just had an RRP on March 1, got my path' results today along with cath' removal. My signature has a diagnosis time-line so I won't re type that here.

Here's the report,

MICROSCOPIC DICTATION:
A. Sections show nine lymph nodes, negative for malignancy

B. Sections show multifocal carcinoma with areas of Gleason pattern 3, 4 and 5. Tumor is bilateral and comprises 21% of the left lobe and 3% of the right lobe. Overall Gleason grade is 4+4 =8. Tumor invades left seminal vesicle. Tumor is focally present at inked margin, but shows no definitive extraprostatic extension (aside from left seminal vesicle).

DIAGNOSIS:
A. pelvis lymph nodes (excision)
-- 9 lymph nodes negative for malignancy (0/9)
B. Prostate gland (Radical prostatectomy)
--Carcinoma, Gleason 4+4 = 8 with multifocal tertiary pattern of 5 present
--Bilateral tumor present, involving 21% of left lobe and 3% of right lobe.
--Tumor invades left seminal vesicle.
--Focal perineural invasion identified.


The surgeon spared both nerves but had to cut into one side a bit. This was the side with perineural invasion. Gotta admit I wish she had just taken the nerve just as a precaution. With the seminal vesicle invasion is there any point in going in and removing it now?

Just make my first couple of trips to the restroom, seem to have fairly good control if some frequency. Got a feeling I'm really going to miss the catheter and bag at night. I loved getting 8 hours sleep without having to get up.

I am really upset about the lack of notification about the 3 point jump in '08, I can't help feeling that if we'd been on this sooner my prognosis would be better. I asked my PCP about this during my pre-op checkup and she just kind of rambled about changing nurses during that time and "oh by the way you can always call for your results" no apology or real answer why I wasn't told. Not real impressed.

Dr's plan is to wait for 6wk PSA and go from there, if statistically 0 we'll talk about either a wait and see strategy or some precautionary radiation, if higher she has other options.

Spirits are good, Dr said most cases like mine go for 5-8 or more years, I'm going to fight for more. Glad to hear from everyone, especially those who have faced Gleason 8+ T3b tumors who are still kicking.
Cheers
daveshan
Durango CO
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

Post Edited (daveshan) : 3/16/2010 6:38:09 PM (GMT-6)


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 3/16/2010 12:39 PM (GMT -6)   
Dave,
Welcome aboard and sorry that you are here as well. A point jump, didnt see the numbers, but I would be upset as well. PCa is an emotional roller coaster so the threads reflect that. Hope is here also. My gelason was upgraded to 3+5 =8 and then within six months my PSA went up to .6. Just finsihed IMRT. Not sure what my future holds but will enjoy whatever I have to the fullest, and hope to celebrate my 90 birthday with my wife by my side.
 
I hope all goes well for you and keep us posted on your next test. By the way Durango is one fine town, with great food and scenery. Enjoy.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10, Completed 39 tx at 72 gys on 3/12/10
Great family and friends
Michael


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 3/16/2010 12:43 PM (GMT -6)   
Dave,

Welcome to HW, but we are real sorry you have to be here. Sounds like your recovery is going well. At this point, that is about all we can hope for, a good clean recovery.

So pull up a chair and join in on the conversations. There are a bunch of knowledgeable and supportive folks here. If you have spent anytime here looking around, you know that the experience level here covers just about everything to do with PCa.

Welcome,

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.1---CARRRP --waiting for the next test.


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/16/2010 12:45 PM (GMT -6)   
Hey Dave welcome to the forum herein, you got hope amigo, I got 8 yrs. thus far with an uncureable scenario and currently doing really well, considering the parameters and time gone bye. You might actually get better results than you even know of, right now. Did you read Dr. Strums book- A Primer on PCa? I'll give you a refund if it isn't a great learning experience.
Youth is wasted on the Young-(W.C. Fields)


Sunbird
Regular Member


Date Joined Apr 2008
Total Posts : 140
   Posted 3/16/2010 1:12 PM (GMT -6)   
Dave,

There are lawyers who will take cases when a cancer diagnosis is missed, and I'm sure your prostate cancer existed in 2008. The VA missed my metastatic lung tumor (from colon cancer) in 1999, and my private physician found it a year later. Unfortunately, my private oncologist wouldn't back me in pursuing a lawsuit, and it's darn hard to sue the Federal Government anyway. There are plenty of lawyers who will take cases on a contingency basis. They don't win....no cost to you. It might be something you wish to explore to occupy your time...Sunbird
1996, Age 48, Stage III Colon Ca, Colon Resection followed by 18 chemo treatments.
 
2000, Colon Ca Metastasis to upper left lung lobe.  Lung lobe surgically removed.  24 chemo treatments scheduled.  Took 1, declined the rest.
 
9/08 PSA is 2.8, 12/08 PSA is 4.56??  Chalk it up to prostatitis due to urinary retention after Nissen Fundo Surgery.  VA docs prescribe 30 days of Septra.  Prostate feels normal.  PSA hovers around 4.1.  VA docs want prostate biopsy but can't seem to get me into the schedule.  Continue through Spring and Fall of 2009 thinking I have prostatitis.  Bacteria cultures are always neg.  PSA drops to 3.1 10/09.
 
12/09 Prostate Biopsy performed
3 of 10 cores positive, 5%, 25%, & 35%, 3 + 3= Gleason Six with perineural invasion.
 
Doc wants CT Scan due to prior Colon Ca. Findings: "The seminal vesicles are irregular & there is nodularity in the periprostatic fat such that local extension cannot be excluded.  Shotty lymph nodes in both groin measuring 2.3 cm."
 
Doc wants Endo-rectal MRI (OUCH!) Findings: Mild central zone BPH, no discrete focus of carcinoma is identified, no evidience of invasion into the periprostatic fat or seminal vesicles.  Normal size iliac chain lymph nodes.
 
2/08/10 Open RP surgery.  Findings: Gleason Six upgraded to Seven.  3 + 4, Stage pT2c, Bilateral w/perineural invasion, No pos lymph nodes,  margins uninvolved, no extraprostatic extension, no seminal vesicle extension,  39 grams, blood loss 1200 ml (didn't want a transfusion & didn't get one) nerve bundles spared bilaterally.  current age-61


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 3/16/2010 1:25 PM (GMT -6)   
It might be best to get treatment behind you before thinking lawsuit. That has to add a great deal of stress to an already stressful situation. But a 3 point jump and no notification, at the very least they would not be my PCP anymore. My psa jumped less that 1 point 2.7 to 3.5 and she referred me to an Urologist.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10, Completed 39 tx at 72 gys on 3/12/10
Great family and friends
Michael


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 3/16/2010 1:31 PM (GMT -6)   
I'll just say welcome to the forum. The other guys have a good discussion going about your situation. Stick around and keep us informed, ok?
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


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 3/16/2010 1:58 PM (GMT -6)   

Dave:

Certainly, you should have followed up and called. They are correct. But it seems the primary responsibility is theirs. When you get a test result that is out of the ordinary, the doctor is supposed to contact you. This is total negligence on your doctor's part.

However, a lawsuit would me messy as can be. You would have to convince a jury that due to their negligence, you've suffered greatly. I'm sure they would have their own experts testifying that the 1-year delay is no big deal. I suspect you'd have a good shot at winning such a lawsuit, but as someone else said, you have enough to deal with as it is. It isn't worth getting bogged down at this time. But maybe down the road...

 

I don't blame you one bit for being irate.

 

Good luck

 

Mel


63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent!

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in late May.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/16/2010 3:44 PM (GMT -6)   
Hello, Dave, and welcome to HW Prostate Cancer. You have quite the journey there. Please stay with us and continue to post.

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


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 3/16/2010 4:02 PM (GMT -6)   
Dave, what a shame about the jump in PSA in '08...someone definitely dropped the ball on that one! Fortunately, we both get copies of all our lab work from individual doctors so that we have the information rather than relying on someone making the call. In fact, this past October I had my annual ob/gyn with accompanying Pap smear. about 2 weeks after my visit, I hadn't heard anything about the results of my Pap smear. Called the doctor and was told they were behind in getting notices out. Was also told I would have heard from them much sooner had anything been suspicious. I nicely told the nurse I assume nothing - no news simply means no news, and I like to have the results in writing.

Unfortunately, there's nothing you can do to undo what happened, and even a law suit wouldn't change the reality. Listen to Zufus...through alot of hard work and research, he is beating the beast. Remember, you are in charge.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs 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!


daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 3/16/2010 4:33 PM (GMT -6)   
Thanks for the warm welcome and kind words folks. As of now I'm not planning anything other than focusing on recovery/treatment and enjoying my retirement, my wife is not quite as accepting and I can understand that. If the roles were reversed I'd be out for blood, funny how that works. Believe it or not my biggest concern the last few weeks is whether or not I'll be continent enough to do trails at the Moab Jeep Safari in a couple of weeks. Right now it looks good, we'll see what kind of progress the next week brings.

I did order Dr Strum's book, just for ifo' and will continue to read/post as things progress.

As my urologist and so many on this board say

"It is what it is"
Cheers
Dave
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


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 664
   Posted 3/16/2010 4:36 PM (GMT -6)   
Best of luck Dave,
You have found a wonderful place here at HW
Hero
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.


deer hunter
Regular Member


Date Joined Jan 2010
Total Posts : 250
   Posted 3/16/2010 7:21 PM (GMT -6)   
Like they said sorry your here but its the best place to be for information an d iI think this crowd knows more than most doc ps went thru Moab comring back form the Grand Canyon stop and had lunch don't remember the name.At that time i didn't know they had that there. I plan to try to go back this summer I hope.
DEERHUNTER
dx age 57 01/06 open RP 4/06 psa in 01/06 8.1  surgery path report Gleason 3+4=7 poorly differentiated  tumor was 90%involved in both lobes surgical margins postive. in the right apex and right radial margins tumor grade G3  perineural invasion present high grade of PIN found  T2c NX MX PSA 0706  .01 10/06 .02 01/07 .03 04/07 .04  06/07 .05  07/07 .08 07/07 bone scans pelvic ct neg. 08/07 proscintic scan neg.9/07 psa.10 net with rad onc. wanted to do SRT but i did not do it 10/07  saw a new dr at Emory University [my old dr urg. suggested second opinion ]  bone scans negs ct scans pelvics neg. biopies of the bladder and adrinal glands neg.another proscintic scan neg.12/07 Psa .11 clinial trial Emory injected with protons to try and find the cancer cells no luck 3/08 psa .17 06/08 psa .23 psa 09/08 psa .32 12/08 psa .39 3/09 psa .39 6/09 psa .43  meet with medical onc. he said  i might have waited to long to start SRT 7/09 psa .50  another bone scan ct scan all neg.MRI neg. meet rad. onc. 7/09 started casdex 50mg 1 day for 30 days 2 shots of lupron started rad treament 10/09 40 treatments 75 gm 12 shots each time all aroud pelvic finished 12/09  psa .07 and psa 01/10.05 next dr visit 03/10 wait and see!!!!!!

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