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PaulC
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- 91343 (Los Angeles)
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PaulC's Groups
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Let's Talk About Survivo…
30 members
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Africa & Prostate Cancer
22 members
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Medical Photography
20 members
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Good News!
6 members
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Coping with Prostate Can…
43 members
PaulC's Discussions
raised psa following surgery
Hi Rita, My story is quite similar to your husband's. Before surgery, my biopsy was graded at Gleason 7(=4+3), but the postsurgical pathology report regraded me to a high Gleason 9=(5+4), and my PSA…
Replied Jul 12
"Wonder Drug"
I think it's important, but not worth the superlatives. The only sources that seem to be making it a big deal are in the UK: http://tinyurl.com/5hj6tu in the Telegraph and Argus The "70-year" angle…
Replied Jul. 22, 2008
The significance of Gleason Grade at Diagnosis
Hi Molly, To answer some of your questions: indolent is the opposite of aggressive. An indolent cancer is one that grows slowly, spreads slowly, and is generally lazy. People use the word Gleason a…
Replied Jul. 13, 2008
"The Language of the Journey" and related matters
I think Dr Oppenheimer is onto something with the idea of calling low-grade prostate cancer something other than "cancer". After all, there are probably millions of men who are walking around with ne…
Replied Jul. 1, 2008
"The Language of the Journey" and related matters
I love this topic. I'll do my best not to talk it to death. :-) First of all, it's not possible to control the bricks and mortar of language. Inevitably, if there is a thing or process that is widel…
Replied Jul. 1, 2008
Potential issues with this type of format
Here's a user-interface enhancement I'd like to see: Allow members to send private e-mail messages to nonfriend members based on membername alone. A reasonable restriction to guard against spam would…
Replied Jun. 15, 2008
No ED and/or continence group(s) ?
A quick correction to that last URL. It should be www.yananow.net with two "a"s. (yana = "you are not alone")
Replied Jun. 12, 2008
Potential issues with this type of format
After you've logged in, your name appears at the top left of each page. Just to the right of it is an icon in the shape of an envelope. Clicking this icon toggles the display of the e-mail facility.…
Replied Jun. 8, 2008
Potential issues with this type of format
There are a bunch of confidentiality issues, but they are mostly related to the fact of communicating online, not to this specific type of forum. And some of the non-online issues are inherent to th…
Replied May. 28, 2008
The significance of Gleason Grade at Diagnosis
Fast-and-loose generalizations are useful only within a certain context. My take on it is this: For a majority of men, PCa is an indolent disease, just as the majority of influenza cases are nonfata…
Replied May. 20, 2008
PaulC's Page
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Latest Activity
Men under 50 or 55 often have concerns that are different from those over 65 or 70. Here's a place to talk about them.
There's no age limit; indeed, it's helpful to get the older crowd's perspective on issues whose importance changes with age.
Men under 50 or 55 often have concerns that are different from those over 65 or 70. Here's a place to talk about them.
There's no age limit; indeed, it's helpful to get the older crowd's perspective on issues whose importance changes with age.
Men under 50 or 55 often have concerns that are different from those over 65 or 70. Here's a place to talk about them.
There's no age limit; indeed, it's helpful to get the older crowd's perspective on issues whose importance changes with age.
Men under 50 or 55 often have concerns that are different from those over 65 or 70. Here's a place to talk about them.
There's no age limit; indeed, it's helpful to get the older crowd's perspective on issues whose importance changes with age.
Men under 50 or 55 often have concerns that are different from those over 65 or 70. Here's a place to talk about them.
There's no age limit; indeed, it's helpful to get the older crowd's perspective on issues whose importance changes with age.
Bryan,
I think all of us want to hear "good news" and so your message of gratitude and hope is definitely worth sharing. We're all on the same path, some of us moving more deliberately and as I've come to learn, so many different circumstances are…
Fellow Warriors,
Just wanted to inform the group on what has been "up" with me post-op. Surgery RLRP "nerve sparing" performed 8/19/09. Gleason score 3+3=6 high grade PIN in many of cores,one core with cancer found.
Cath. out 12 days after surgery.…
Men under 50 or 55 often have concerns that are different from those over 65 or 70. Here's a place to talk about them.
There's no age limit; indeed, it's helpful to get the older crowd's perspective on issues whose importance changes with age.
Men under 50 or 55 often have concerns that are different from those over 65 or 70. Here's a place to talk about them.
There's no age limit; indeed, it's helpful to get the older crowd's perspective on issues whose importance changes with age.
Gary,
I know this is really scary right now but please take note of all of us on this and many other blogs. We all went through it, we all talk about it and 99% of us go on with our lives after it is over... You are not alone! Take heart in all the…
Bryan,
As I read your report it is VERY similar to my experience five years ago. I went from pads to drips and then a drip or two with a lot of time between. Being tired is still a factor five years later even thought I am in the best shape I have…
Profile Information
- Have you been diagnosed with prostate cancer?
- yes
- About Me:
- I'm a guy-next-door sort of guy, bright, nerdy, inquisitive, boyish, articulate. White, tall, overweight (BMI=29), upper-middle-class, nonreligious, residing in the greater Los Angeles area since 1974. I'm currently 51 (born in 1956). Marc and I have been happily partnered for 22 years, but are now recently empty-nesters - my 26-year-old is on her own in another state.
Even though cancer runs in my genes (father, mother, sister, daughter, grandfather, cousins), we tend to be reasonably healthy and long-lived if we exercise.
Life Before Prostate Cancer
I had no unusual health concerns through my 30s or 40s, aside from the usual lazy-American-male trajectory - desk job, long hours, high anxiety, no exercise, gradual weight gain, borderline high cholesterol, borderline hypertension. No smoking, no drugging, and no excessive consumption of fat, sugar, or salt.
Diagnosis: May 2007
In May 2007 (specifically, 2007-05-19), at age 50, I had a thorough checkup, including DRE and PSA. A bump was felt, and my PSA came back at 5.2, quadruple the 1.3 value it had been 26 months before (on 2005-03-02), so my GP referred me to a urologist.
On 05-21, the urologist independently verified the bump and elevated PSA (4.56), confirming my clinical stage as cT2aNxMx.
On 2007-05-29, pre-biopsy ultrasound found:- Prostatic volume = 19cc: 30mm x 41mm x 29mm
- Hypoechogenic areas in right mid area
Three of the 12 cores were found to be positive:
- cGS7=3+3 measuring 1mm (=10% of tissue) in left mid
- cGS7=3+3 measuring 4mm (=30% of tissue) in right mid
- cGS7=4+3 measuring 4mm (=70% of tissue) in right mid lat
- cGS7=3+4 measuring 4mm (=30% of tissue) in right mid
I did a lot of investigation over the next few months and decided that my best option was robotic laparoscopic retropubic radical prostatectomy, nerve-sparing if possible, at the best nearby facility (City of Hope), done by a surgeon with a thousand or so LRPs already under his belt. During this same period of time (June-July), I started making some changes in diet.
Primary Treatment: Robotic Prostatectomy
On 2007-08-24 I underwent da Vinci LRP, bilaterally nerve-sparing (although the surgeon told me he "shaved" the nerve on the right.) There were no perisurgical or postsurgical complications, and I was discharged the following day. The catheter came out six days later, and I had mostly regained continence a few days later.
Up to this point, the story has been quite typical for a 50-year-old man undergoing RP as primary curative treatment for clinical T2a GS4+3 PCa.
Post-Treatment Oddities
The first curve ball came from the pathology report, which re-staged the cancer to pT3aN0Mx (extracapsular extension; no involvement of the six nodes harvested or seminal vesicles or the two right neurovascular bundles; negative surgical margins) and re-graded it as pGS9=5+4.
PSA History
But the bizarre story begins with the subsequent PSA testing. I'll simply list all the dates and results so far.
- 2002-04-19 .... 0.9 : 5.4 years pre-RP
- 2004-01-15 .... 0.8 : 3.6 years pre-RP
- 2005-03-02 .... 1.3 : 2.5 years pre-RP
- 2007-05-09 .... 5.2 : 15 weeks pre-RP
- 2007-05-29 .... 4.56: 12 weeks pre-RP
- 2007-06,07,08 ... - : no PSA tests, unfortunately
- 2007-09-18 .... 4.6 : 3.5 weeks post-RP
- 2007-09-25 .... 4.5 : 4.5 weeks post-RP
- 2007-10-08 .... 4.4 : 6.5 weeks post-RP
- 2007-11-01 .... 3.0 : 10 weeks post-RP
- 2007-12-04 .... 1.9 : 15 weeks post-RP
- 2007-12-20 .... 2.0 : 17 weeks post-RP
- 2008-01-31 .... 2.1 : 23 weeks post-RP
- 2008-03-13 .... 1.9 : 29 weeks post-RP
- 2008-04-02 .... 3.0 : 32 weeks post-RP
- 2008-05-08 .... 3.55: 37 weeks post-RP
- 2008-05-29 .... 3.8: 40 weeks post-RP
The first post-op PSA of 4.6 seems utterly inexplicable to me, unless possibly my PSA shot up from 4.56 in late May to 20 or 30 in August. I wish in retrospect that I had insisted on at least one pre-op PSA test being done, so that I could have at least one data point from that vital period of time.
Explanations - Guesses Only, All Unsubstantiated Thus Far
The subsequent drop in PSA from September to November may possibly be the result of changes in diet, which might have caused or been accompanied by decrease in testosterone. I had previously been drinking half a gallon of nonfat milk every day, which I stopped entirely, drinking 20 to 50 oz of soy milk instead. I also cut out red meat, started taking vitamin D3, etc. I also became very depressed during this period, possibly because of (and/or causing) a diminution in testosterone, which was 157 on 2007-11-01.
The drop in PSA from November to December, and subsequent stabilization around 2.0 in the three months since, may be a continuation of the effects of dietary change, or the results of the clinical trial I started on 2007-11-09 (TORI GU-01: bevacizumab infusions every 3 weeks, plus daily erlotinib).
Evidence from Imaging - No Clues So Far
All diagnostic imaging thus far has been essentially negative:
2007-06-19 ... Bone scan is normal.
2007-08-10 ... Chest X-ray is negative.
2007-10-05 ... CT scan shows no changes except those from RP.
2007-10-11 ... Bone scan is normal; no change since 2007-06-19.
2007-10-12 ... PET scan shows no changes except those from RP.
2007-11-13 ... ProstaScint shows mild warm spot in fossa.
PaulC's Blog
2008-08=August: Starting ADT
- 2008-08-03=Sunday.
Just to help me remember, here are some things I am and am not experiencing as of today:
- I still have libido: I can feel my pupils widen when I see a sexually attractive person, and I can summon a mild erection if I've had a PDE5 inhibitor and am thinking about sexy things. I wonder how long this will last.
- No hot flashes yet, although having the cooling portion of the house's a/c unit stop functioning last Thursday night was hardly cond
Posted on August 3, 2008 at 11:30am —
Comment Wall (118 comments)
- At 9:54pm on October 21, 2009,
John S said…
- Hi Paul-
I see you are from the L.A. area also. I would like to get info about the best Dr.'s/treatments. I'm looking into the City of Hope and UCLA Medical Center. I was just diagnosed 2 weeks ago so still trying to figure it all out.
John
- At 8:45pm on July 12, 2009,
Angela Jenkins said… - Paul - it was good to see your post today. Hope you're well. Let us know how you're doing. AJ
- At 8:06pm on May 25, 2009,
Howard Lake said… - Hi, Paul. I did the ADT-3 therapy and followed up with seeds and implants and another small dose of radiation. I wasn't happy with the hot flashes and the low testosterone but it was better than having a radical and going back to deal with the ECE, which the Partin tables told me were a likely comcomitant. Seven years later my PC is gone, my PSA is at .003 and T is normal but I have a lot of urinary issues resulting from scarring in the urethra as a result of the radiation and seeds and sexual activity is nil.
- At 8:32am on March 13, 2009,
Angela Jenkins said…
- Paul - I've been thinking about you and wondering how you're doing. Haven't heard from you in quite some time now. Are you doing good and just really busy? Are you still on your ADT therapy? Please let us know. We care.
- At 8:52pm on December 28, 2008,
Albert Pugh said… - Paul,
I hadn't heard from you in a while since you started ADT therapy. As for me, my psa had increaseased from a low of 1.4 up to 2.7 in Sept 2008. I started chemo protocol the end of Sept and have just finished my 2nd 6 wk cycle of chemo. I have one more to go and am on my 2 wk off period. All I can say is that this is making me sick as a dog.
I have another round of tests and scans scheduled for this next week. My psa is down to 0.8 now.
Have a Happy New Year,
Albert Pugh
- At 10:54pm on December 16, 2008,
peter augustinus said… - Paul, try hot flashes in 40 degrees in ze bush with a Rhino on your arse, hell that can be something, amazing how quickly they dissapear !
Hang in there !! it could be one hellava lot worse ! Take care and have a good Xmas and a better new year !
- At 9:22pm on December 16, 2008,
Kevin Timken said… - Paul -
I should have done this sooner - I want to thank you for the kind welcome and advice when I first arrived last summer. I'm sure it didn't seem like much to you, but it made the last months before my surgery easier than they would have been otherwise.
Kevin Timken
- At 11:42pm on November 14, 2008,
Angela Jenkins said…
- Paul - just wondering how you're doing? Started back to work yet? Hope you feeling better.
- At 2:01am on October 26, 2008,
peter augustinus said…
- Hi Paul, I hope you got my last comments !! I am BC when it comes to IT but I did leave a comment for you, I see it has not appeared ?? dunno, if you havnt received I will resend !
Peter Augustinus South Africa
- At 9:22am on October 18, 2008,
Angela Jenkins said…
- Paul - It was good to see your recent posts. Been wondering how you are. Hang in there. Look forward to hearing more from you soon.
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