THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.
2012 Dec 16 18:00
Newbie here. This, as I think of it at the moment, will be my diary, my account, of the adventure ahead. Currently, we're at pre-biopsy. It's been two months since my DRE (digital rectal exam). On 16 Nov 2012 I write:
"Michelle, Wake Health Urology nurse, called to say my prostate was abnormal at 6.74 and that Dr. WhateverHisName was wants to do a prostate biopsy. I need to take cipro 500 mg 2 X daily, for three? days. She passed me off to the appointment scheduler who could only find a 23 Jan opening. I said that's too late, I'll die before then, give me my nurse, she'll do better. But nothing doing; I must leave a message, she'll call back the next business day."
Of course I was fooling but also expressing a bit of uncertainty, an element that weighs more and more on me now as I find out that I can't really find out what my status is nor what I should do before the scheduled biopsy.
2012 Nov 30
"It was past noon, a full hour and a half before I got ushered in to see my urology guy. I had brought a whole 8 1/2" X 11" sheet loaded with questions to ask. Bhadlani did explain a couple of things and I did opt to have the biopsy done. I figured if nothing else I'd not have to reschedule if I ultimately did decide to go through with the biopsy. Being no stranger to the internet I knew my information would expand. I expected more information would be coming down the pike about the effectiveness and disadvantages of having a biopsy done. Jorie, my S.O., did manage to hold her tongue during the question and answer session, injecting only items that seemed to interest her rather than betray her fundamental distrust of the medical establishment."
In the intervening weeks Jorie began gnawing at me, pushing to enforce her agenda and sideline my skepticism, my disinclination to accept her "evidence". She used the usual arguments - I won't go through them here - to make me suspicious of the medical establishment. And horror stories of friends of friends she knew whose life had gone down the drain as a result of surgical intervention, biopsy among these. You're healthy, she cried, you'll die of something else before you'll die of prostate cancer!
It was clear that I had a concerned companion but also one who was unwilling to allow me think space. I needed to get her out of the house, back to her apartment. I needed to tell her to back off, tell her this is my decision and that rather than force her fears down my throat she would do best just to ask me questions, questions to help me consider, help me develop my own opinion re the scheduled biopsy.
My urology guy called me [30 Nov] as a follow up to our conversation in his office, asking me if I had further concerns. I told him I'd write him a letter and send it to him at his office once I'd gotten a better grip on whatever information is out there. He was ok with that. It's been two weeks since that call. A bit better than two weeks now. I've been online most every day, trying to get oriented. During this period the main thing that's happened is MORE UNCERTAINTY. Today, when I found YANANOW, it was like Hell yes, I'll join! Community is tantamount to information. Anecdotal, but still.
So sometime during the Xmas holidays I'll write that letter. As I see it today, it will say Let's Slow This Train Down, Brother. I have hope that diagnostic techniques (tomography, ultrasound) will improve shortly, so that needle tracking will become a non-issue in my case. My S.O. adamantly maintains that needle tracking is what releases cancer cells, for example, into one's blood stream, thereby causing whatever ailment is present to spread throughout the vascular system. Such an image does strike fear in my gut, but does that image come from disinformation, from pseudoscience, or it is actually a reality one must contend with?
OK, that's it for now. Time to go swim laps.
In an attempt to get myself informed about the progression of PSA indicators reported to me in lab results from 2001 (age 62) through 2012 (age 73) I've had to do a lot of digging. My habit is to save most any document that may turn out to be useful at a later date and to throw it in an upright filing cabinet, sometimes in a manila folder with a name on the tab, sometimes just not. Thus the hours and hours of digging.
But now there is visible somewhat of a progression: PSA increase from 1.4 to 6.74 over a period of 11 years. It's just that I don't know squat about how to use this information, or if it's even usable at all ! Yet I believe it *has* to be pertinent in some way.
My uro guy, without having any of this info in front of him, on seeing the last lab report (of a 6.74 PSA) and finding what he called induration of the right lobe of my prostate gland, immediately had me scheduled for a biopsy. He didn't even tell me he was going to schedule it; I got the news via a phone call from one of the nurses at Wake Health some days after my initial (and only) visit (to that point).
So yes, I feel a little rushed. A little worried about the haste implied by the scheduling. But more worried about the time I don't have to get myself adequately informed. I've been given ten weeks but I made need four months before I gain a solid understanding. I don't want to submit to a biopsy merely on the recommendation of my guy. Figuring out my options while seated on my throne in front of the Google box, while much better than having no such recourse, still does not settle my hash. I need help!
Here (below) is what I've dug up so far. I do know that during these eleven years there was one lab report indicating a PSA of 4.7 but to fit it into the 2009-2010 time span without knowing for sure -- I may just have to give up on that one.
62 - Dec 2001 - lab report - PSA 1.4
64 - July 2003 - lab report - PSA 1.7
64 - Feb 2004 - lab report - no PSA indicator
65 - Aug 2004 - lab report - PSA 1.6
66 - Aug 2005 - lab report - PSA 2.3
66 - Dec 2005 - PSA was done but I have only the Medical Summary Notice
67 - Jan 2007 - lab report - no PSA indicator
68 - July 2007 - lab report - no PSA indicator
68 - Oct 2007 - missed appointment with Dr. Marks
68 - Jan 2008 - Blood drawn for PSA - need to search for other 'MEDICAL' folders
68 - Feb 2008 - lab report - no PSA indicators
69 - Dec 2008 - lab report - PSA 2.9
69 - Mar 2009 - lab report - no PSA indicator
70 - July 2009 - lab report - no PSA indicator
72 - Aug 2011 - lab report - PSA 5.3
72 - Mar 2012 - lab report - PSA 5.1
73 - Nov 2012 - 6.74 + induration - right side
2012 Dec 28 - working on my Letter of Inquiry to my uro guy, Dr. Badlani.
Sir:
FYI - I should tell you, up front, that I am an individual, I represent no one but myself. Also, that my questions are specific to my thinking. I am not guided by any organization nor by anyone who seeks to invalidate your reputation, your experience, your ability to bring me through this prostate adventure.
(This [above] was included in my Letter of Inquiry because during my first round of questions to him in my very first visit, my uro-doc was suspicious of my motives, asking "Where are you headed with all these questions?!")
During the last several weeks I have tried to inform myself by reading online. About biopsy there are hundreds of opinions, some questioning the safety of the procedure, some lauding it as a life-saving measure. Being very young in my investigations, I wish to pose the following questions, in writing, to you, and I request a written (or recordable) answer from you. Please be as specific and direct as possible in your answers. Neither of us want to waste each other's time.
Of course we're not there yet, we only have the PSA, the asymmetry, and the induration, but I don't recall your telling me what my free PSA % was when you informed me that my PSA was at 6.74 What was it?
Is rate of increase over time of significance in interpreting my PSA levels? Mine goes from 1.4 in 2001 to 6.74 in Nov of 2012, with more noticeable but still predictable rise since early 2009.
62 - Dec 2001 - lab report - PSA 1.4
64 - July 2003 - lab report - PSA 1.7
64 - Feb 2004 - lab report - no PSA indicator
65 - Aug 2004 - lab report - PSA 1.6
66 - Aug 2005 - lab report - PSA 2.3
66 - Dec 2005 - PSA was done but I have only the Medical Summary Notice
67 - Jan 2007 - lab report - no PSA indicator
68 - July 2007 - lab report - no PSA indicator
68 - Oct 2007 - missed appointment with Dr. Marks
68 - Jan 2008 - Blood drawn for PSA - need to search for other 'MEDICAL' folders
68 - Feb 2008 - lab report - no PSA indicators
69 - Dec 2008 - lab report - PSA 2.9
69 - Mar 2009 - lab report - no PSA indicator
70 - July 2009 - lab report - no PSA indicator
72 - Aug 2011 - lab report - PSA 5.3
72 - Mar 2012 - lab report - PSA 5.1
73 - Nov 2012 - 6.74 + asymmetry/induration- right side
NOTE: Sometime between Dec 2008 and Aug 2011 there was a PSA result of 4.7; I have no locatable copy of the lab report, nor does Lexington Family Physicians.
We saw no change with the drug but How did the Doxazosin help you determine that I did not have an obstruction problem? The drug was designed to _________ ?
Given the described rise in PSA, is the induration that was reported in Nov 2012 the main reason for your decision to schedule a biopsy for me?
Do you regularly schedule your patients for a biopsy without personally informing them that you are going to do so?
Do you usually expect a patient to know enough about having a biopsy to figure out on his own whether he should have one or not?
Do you have a pamphlet or a flyer, or websites, or ANYthing which will provide me information regarding local prostate cancer support groups? Is there a prostate cancer support group affiliated with Wake Health?
Rectum swab. I may be one of those people who does the Fleet enema ineffectively. I have no clear idea of what this (rectum swab) is so my questions come mostly from ignorance. I assume the idea is to reduce the possibility of infection, to wipe out any super bugs, ecoli, whatever. So; before my biopsy will you check my intestinal tract to see if there are antimicrobial (Cipro)-resistant bugs present? Will a phosphate enema with providone-iodine be administered? Do you consider this overkill if I've already taken the Cipro or do you administer it anyway as standard operation procedure?
If it turns out that I get a Gleason score of 4+4, 4+5, or 5+4, or even a 4+3 and you feel that this is sufficient evidence for further treatment, what will it be? What are the treatment options that are offered at Wake Health?
Needle tracking. Is a prostate biopsy associated with any risk for the spread of cancer within or outside the prostate? I find more than a few websites saying that during a biopsy cancerous cells escape from the prostate and enter the bloodstream. The same websites say there's no proof of such an event but they insist in the logic. What's the deal?
What type of anesthetic will be used, if any? Is this an injection, and, if so, where?
You told me mine would be a 12-core procedure. Why not 14?
Sat 5 Jan 2013
During the interim since our last phone conversation in December I've made an effort to get myself better informed about prostate conditions. That process has left me with quite a few more questions than when we first talked at Wake Health.
At the time of my 30 Nov appointment with you, you were running behind schedule about an hour and a half. It's probably a good thing that I didn't have my ducks in a row or you would have been behind yet another hour and a half!
Anyway, here (below) are some MORE questions I'd like for you to address. A portion of these may be based on misinformation - you get a lot of that on the web - but hopefully I've not fallen into too many traps.
Thinking broadly, false negatives and false positives aside, I'm wondering what the value of a biopsy would be and why this path was chosen for me with no discussion of its merits and its drawbacks. Did you feel that it is up to the patient to figure that out on his own?
I'm clear that biopsy is needed for a Gleason score and for staging, etc. and for deciding what comes next, if anything. I also understand that it's your job, your mission, to make sure I die of something other than prostate cancer. In terms of years left to live, what is gained by knowing that I have a minimally aggressive form of prostate cancer, for example? or even by knowing that I have a more aggressive form?
Poorly stated but I think the question is clear: For determining the extent of cancerous growth, is there an effective diagnostic tool which, unlike the biopsy, is non-invasive? an endorectal MRI, plus or minus Color Doppler? MRI-S (Spectroscopy or the evaluation of cellular metabolic by products or metabolites including Citrate, Choline, Creatine, and Polyamines)? 3.0 Tesla MRI-Spectroscopy
What the heck is this?! Hematologic spread of carcinoma results in incurable metastasis; yet, the basic characteristics and travel mechanisms of cancer cells in the bloodstream are unknown. We (http://iopscience.iop.org/1478-3975/9/1/016003 ) have established a fluid phase biopsy approach that identifies circulating tumor cells (CTCs) without using surface protein-based enrichment and presents them in sufficiently high definition (HD) to satisfy diagnostic pathology image quality requirements. This 'HD-CTC' assay finds >5 HD-CTCs mL−1 of blood in 80% of patients with metastatic prostate cancer (n = 20), in 70% of patients with metastatic breast cancer (n = 30), in 50% of patients with metastatic pancreatic cancer (n = 18), and in 0% of normal controls (n = 15). Additionally, it finds HD-CTC clusters ranging from 2 HD-CTCs to greater than 30 HD-CTCs in the majority of these cancer patients. This initial validation of an enrichment-free assay demonstrates our ability to identify significant numbers of HD-CTCs in a majority of patients with prostate, breast and pancreatic cancers.
Could you show me an example of a pathology report that you would receive for me? I'm interested in what details would be included, in esp. individual core descriptions.
Ploidy analysis - helpful enough to bother with?
Sun 6 Jan 2013
Tidbits - better addressed with you face to face:
My International Prostate Symptom Score - 15. Weak Stream getting the 5; Intermittency and Nocturia getting 3's; Incomplete Emptying and Frequency getting 2's; Urgency and Straining getting 0's.
Tests for planning treatment:
Additionally, other prognostic tests such can be extremely helpful to plan therapy. These tests are done using IHC (immunohistochemistry) and include: AMACR, AZGP1, AR, BCL-2, CGA, COX-2, EGF-R, FAS, HER2/Neu, HSP-27, MIB-1, MUC-1, PAP, Somatostatin, D2-40.
Written by a YANA person: "The normal prostate throws off a certain amount of normal PSA; and can be calculated using a formula of gland size X a number. (I think this is cc X.66) Any PSA; larger than this would be suspicious.
Also, Free PSA and PCA3 are indicators of PC and if are abnormal you should get a biopsy. The best predictor is PSA doubling time. Inflammation will cause PSA; levels to fluctuate, but PC will increase PSA; at a steady rate over time. Stephen Strum, one of the best PSA; authorities said he has never seen a PSA; that had a doubling time of less than 12 years not be eventually diagnosed as PCa."
UPSHOT:
Before we go to biopsy I will need responses to these questions and reflection time. Possibly more questions will follow. My biopsy date, as currently scheduled, is the 23rd of Jan. If my questions haven't been fully responded to and/or if there are hanging questions still, could we simply reschedule the biopsy but also have another PSA done?
signed and dated 6 Jan 2013
I elected to have a 37-core biopsy at the end of April 2013. The lab report showed cancer on the right side only, consisting of an index tumor and four satellites - all Gleason 6's. After getting a second opinion (which agreed in essence with the first) I kicked my options around for months, watching my PSA rise steadily. Sometime in September I began to feel the pressure to do something besides more research. Also in September I did a 10-day water fast. My PSA following the fast was remarkable: significantly lower. In October 2013 I committed to cryo.
It's been two months exactly today. These two months have been a royal pain in the butt! The peeing problem I had - IPSS score 28 at the time of cryo surgery - has improved. I'm only getting up three times a night as opposed to six, and the number of micturitions per 24hrs has dropped from 13 to 9 on average. My main complaint now is that I can't sit down. Well. I can sit down but I'm soon needing relief. It seems that something was done during surgery that weakened the interior portion of my anus. Fecal material tends to lodge there and aggravate the tissue. [Lovely details, I'm sure!]
So as I said at the top, I'm in the middle of hoping this will resolve itself.
Mikal's e-mail address is: ntppaw AT triad.rr.com (replace "AT" with "@")
NOTE: Mikal has not updated his story for more than 15 months, so you may not receive any response from him.
