The New Prostate Cancer InfoLink
A Not-for-Profit Production of the Krongrad Institute and Vox Medica
PaulC's Page
PaulC's Groups
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Nearing the end
(2 members)
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Active Surveillance
(12 members)
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Gay, Bisexual Men & Transgender Women
(4 members)
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Younger Men
(51 members)
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Cryo
(4 members)
PaulC's discussions
"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 ...
Added a reply Jul 1
"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 wid...
Added a post Jul 1
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 wou...
Added a post Jun 15
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")
Added a reply Jun 12
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...
Added a reply Jun 8
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 ...
Added a post May 28
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 nonfa...
Added a post May 20
Taxotere
Hi Sergio, Good luck with your clinical trial. I just finished my 24-week trial of erlotinib + bevacizumab and found the process interesting and the side effects annoying but quite tolerable. Keep ...
Added a reply May 5
Clinical trials
Here are some clinical trials taking place in Indianapolis that might be of interest: NCT00309985 NCT00079001? NCT00134056
Added a post May 2
Clinical trials
If you're unacquainted with the clinical trials search engine, I can offer some assistance. Where are you located? For example, if you were located in Los Angeles, you might want to look at the fo...
Added a post May 2
A Dialogue About Physician-Patient Dialogue
I'm surprised, and also just a bit disappointed. Surprised ... that no patients have ever previously asked you how we can help. I always ask my physicians this question, just as I would ask it of ...
Added a reply Apr 7
A Dialogue About Physician-Patient Dialogue
People sometimes have an unfortunate tendency to lump, label, and dismiss. They're more likely to do so if they feel hurt or judged or threatened. I fear that a lot of laypeople are dismissive of ...
Added a reply Mar 31
A Dialogue About Physician-Patient Dialogue
I'm already on about two dozen social networks for prostate cancer patients/survivors. What I see very little of is physicians, assistants, and nurses seem interested in socially networking with pa...
Added a post Mar 31
Latest Activity
Profile
- 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.
About The New Prostate Cancer InfoLink
Arnon Krongrad, MD
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Comment Wall (70 comments)
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Join this network
Glad to join the ranks of Dr. K's friends, let me know how I might be helpful to others.
Eduardo
Thanks for taking the time to comment. I appreciate it. Will check out your suggestions. I am taking 100mg Viagara nightly with no noticeable effect or side effects but I understand it promotes blood flow.
Steve
Bert
Radiation isn't in the future right now. I didn't have any positive margins. I don't think I'll be continuing the Casodex once I get my shot. It was just to counteract the testosterone flare.
Sorry I missed your earlier message. I, in fact, left a note for Dr. Krongrad suggesting a bit of "robotic surgery" on the site. Way too many topics and sub topics. Getting frustrating to follow. Maybe it's just me.
Thanks for your inquiry. I was not scheduled for my first post-op PSA until July (90 days) but my wife was drawing blood for a routine check of my cholesterol and I asked her to draw an extra pint :) and check off the "PSA" box. While in the spirit of the thing, I asked her to order an extra-sensitive PSA as well and also the Human Anti Mouse (HAMA) test that I understand not at all but she does and that's what counts.
The ultrasensitive PSA was <0.01 and the "HAMA level" was "0". We went out to celebrate with a pizza!
Steve
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