The "New" Prostate Cancer InfoLink Social Network

A Service of Prostate Cancer International

Frank
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  • Dumfries, VA
  • United States
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Latest Activity

E. Michael D. ("Mike") Scott left a comment for Frank
July 3
Frank left a comment for E. Michael D. ("Mike") Scott
July 2
Frank updated their profile
July 2
Frank joined Bob Shiell's group
Good News!
A place where men with positive outcomes from a diagnosis and treatment of prostate cancer can share their stories.
March 31
Frank joined Robert's group
Cryo
A group to discuss the technology, treatments, and outcomes from cryo therapy.
March 31
Frank joined Ken Wiens's group
HIFU
Discussion related to High Intensity Focused Ultrasound (HIFU); comparisons of different technologies; experiences; Q&A. HIFU is a minimally invasive alternative to surgery and radiation for the treatment of prostate cancer.
March 31
Frank joined Jimmy Jenkins's group
Faith and Healing
Spirituality, faith and religion and their roles in coping, healing and recovery
March 31
Frank joined Arnon Krongrad, MD's group
Primary Issues
Individual risk, early detection, coexisting illness, suspicious biopsy. Should you have a stress test before surgery? Your brother was diagnosed: what should you be doing? Do you need to stop Plavix before a biopsy?
March 31
Frank joined Terry Herbert's group
Active Surveillance
Men who choose not to have immediate conventional treatment have very few forums to discuss their minority position, known as Active Surveillance or Watchful Waiting. This can be the forum they are looking for
March 31
Frank joined Arnon Krongrad, MD's group
PSA Persists After RP
When PSA stays high after RP
March 31
Frank replied to Leah's discussion 'Gleason 7 or Above? Why You Must Consider Open Surgery' in the group Surgery
Leah, Could you point to the "specific URL" which deals with this subject you mentioned above "Palpable Prostate, has a 4-part survey of the relative merits ot the different kinds of PC surgery. Then there is a wrap-up of "what surgeons and other...
February 4

Profile Information

Have you been diagnosed with prostate cancer?
no
What brings you to the New Prostate Cancer InfoLink social network?
I have had 2 biopsies one with HGPIN and one with inflammation
Would you help us grow the network? Would you tell others about it?
yes
About Me:
I have had PSAs monitored since the very early 90s. My PSA's that have crept up and shall we say down. Variability like Terry Herbert discusses in his posts. Two biopsies with no PC detected. Have BPH for sure. So I monitor these lists and have my regular urology visits and participate in local USTOO groups to shall we say stay current with what today's thinking is about PC.
For those that might benefit from my monitoring process I just visited my urologist today (July 2, 2009) a process we are now doing on an every 6 month basis. My PSA went over 4 last year but the Free PSA has stayed high as in the 21 - 23% category. It went up over 4 about a year ago, then went to 4.8 later last year and now dropped down to the lower 4's with a Free PSA of 23%. When it went into the higher range last year I visited 4 urologists to get their sense of direction. Several were in the biopsy mode, one was in the saturation biopsy mode, and then a urologic oncologist who is head of Urology at Geogetown University Hospital who has had PC himself looked at the numbers and said monitor it! Two biopsies both negative totaling 20 cores and flucutating PSAs from 2.5 to 5.40 over time. So the road continues. Just thought I would make a posting so that anyone who is following a similar route might see where life is at these days. I have a computer program which allows me to enter all of my readings and percentages and it does velocity and PSA predicitions. My urologist seems to find it interesting that I do some of my own tracking..

Comment Wall (4 comments)

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At 7:43am on July 3, 2009, E. Michael D. ("Mike") Scott said…
Frank: Do you have any clinical reasons to treat the BPH? Have any of your urologists simply suggested that you take finasteride or dutasteride as a means to both treat the BPH and lower you risk level for prostate cancer?

I am NOT necessarily suggesting that you should be doing this. I am merely curious about what all the urologists you have been seeing have suggested as possibilities.
At 10:56am on July 22, 2008, PaulC said…
Welcome to the network, Frank. I have two friends in a similar situation, with worrisomely high PSA values but repeated negative biopsies. One of them has sworn off biopsies (after his third) and now adheres to a regimen of dietary supplements, exercise, and some new-agey techniques of visualization and meditation. The other is more mainstream, and seems to be OK with having had six(!) negative biopsies so far.
At 1:27pm on July 21, 2008, Frank said…
A brief bit of history. My PSA's from the early 90s were always in the higher 2's and then they moved into the low 3's. I have a complete history of my PSAs and have them in a program which computes doubling time etc. In about 2005 my PSA made a jump over the .75 mark so that led to a biopsy (8 cores) which found HGPIN in one sample but not the atypia type cellular structure. Visited a George Washington Univ Urol Dept head who indicated he had more concern for atypia cells than HGPIN. So we waited another 6 months and did a repeat biopsy with the result this time round of detecting inflammation and the like in the biopsy which was a 12 core biopsy this go round. Free PSAs were done which were in the 28%, then 30% and then 27% range. More waiting and then another PSA check in the fall of 2007 at which time my PSA was shall we say back down in the normal range if there is such a thing as normal. My Dr was following the NCCN guidelines as regards what one might should do when they had the above circumstances. So I will return to the urologist later on this fall to see where my PSA is at that time. All of that led me to go to USTOO group meetings and provide assistance to the VA Prostate Cancer Coalition as time permitted. That is the story to date.
At 8:12am on July 21, 2008, E. Michael D. ("Mike") Scott said…
Welcome Frank. We would very much like to see more men like you in this network. We hope that we can help you to "stay current" (which we can certainly do if you monitor the blog on our main site). Perhaps more importantly, however, we hope that you will be able to contribute by informing and educating others from your personal experience.
 
 

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Arnon Krongrad, MD Arnon Krongrad, MD created this Ning Network.

Selected Papers

A History of Orchiectomy 2006
From the Other Side 2006
A Global Epidemic (video) 2007
Searching for Health 2008
The Wisdom of Patients 2008
Medicine Meets Mouse 2008

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