So I'm thinking that this shouldn't be happening to me, but it is. It took me a month to get over the denial and anger (the test was wrong . . . you've got the wrong patient's file . . . I have a very common name . . . have you ever seen cases where the cancer simply vanishes with no treatment? . . .). I'm now in the middle of bargaining, (If I choose laparoscopic robotic surgery can you tell me I won't have incontinence or impotence? What if I let you do the brachytherapy? Are you going to tell me the side effects will be fewer than if I have surgery?).
Bottom line right now is I've got a T1c Gleason 6 (3+3) with 1 of 12 needles positive for about 1/20 of the needle, and a PSA of 4.7. I guess, all things compared to the many stories I've read here, I should be very happy.
Here's how I found out: I'm 57 year old married white male with no history of family cancer or other risk factors. My wife's been an incredible support, going with me to every doctors meeting. She's a part time yoga instructor who's always concerned about fitness--hers and mine. While I'm generally true to the rule of moderation, a fondness for red wine and wonderful food has led me to being 10-15 lbs overweight (5' 10" and 190 lbs). I exercise regularly, but I guess not enough cardio.
I've had annual physicals for over a dozen years. In the late spring of 2007 my PSA was 1.7. In the late summer of 2008 it went to 3.6. My GP/internist referred me to a urologist. The urologist wanted to do a biopsy. I had done some reading and said that since I'd had sex right before the last PSA test, perhaps a course of antibiotics and retesting the PSA first was advisable. They humored me and did exactly that, giving me a course of Levaquin (250ml/day for 10 days). I was then retested and the result was a PSA of 4.7. A biopsy followed, with another course of Levaquin started the morning before the procedure.
The results took two weeks to get back to me. They later apologized for the delay, but the first lab had sent it to Johns Hopkins for confirmation. The biopsy was less a deal than I'd heard. The numbing shot into the prostate wasn't that painful and the 12 needles were more like someone flicking his finger into the insides of my urethra: A surprising and startling feeling, but not really painful.
What was painful was the bacterial prostatitis that developed the next day. A recurring fever of over a 101 and an inability to pee sent me to the emergency room that night, where they inserted a catheter and put me on a drip antibiotic, followed by a 14 day course of Levaquin at 750ml/day. The catheter came out when I left the emergency room after 6 hours and that was no fun whatsoever, but again, not terribly painful.
Lemme tell ya, that infection really knocked me out. A bacterial infection of the prostate is, as my doc told me, "highly vascular." The infection courses through the blood and can cause all kinds of problems. Luckily for me, the drip antibiotic and the follow-up Levaquin took care of it. But I was out from work for a week, and it took literally a month for me to get back to normal with respect to energy level and strength. (And by the way, getting the cancer diagnosis while going through the infection-which they'd said was a 1/100 possibility-didn't make me feel that great, either).
So here it is, I'm a month out from the diagnosis and I've been reading/researching for about 1-2 hours a day. I've read Walsh's 2nd edition and the summaries of probably 100 on-line articles gleaned from the National Medical Library's on-line website. I've gotten a "second opinion" and talked to about a dozen post-treatment/surgery friends, relatives and friends-of-friends. I've concluded that I'll never become an expert in this and at most will be able to ask mostly sensible questions about my cancer.
So you'd think I should know what I'm going to do. But I don't. I'm one of the lucky ones. Everyone I talk to wants to treat me. The radiation oncologist, while highly qualified and very experienced, seems a little like a used car salesman. (No offense to used car salesmen). The Da Vinci surgeon who is probably the most experienced in the Rocky Mtn region, was totally credible and had a fantastic manner about him. But he's the guy who said something like, "Well, the truth is that 30% or so of people in your situation (age/diagnosis/staging) will have some significant long term affects of impotence after this surgery, even if we spare both nerve bundles." The "second opinion" guy was famous and told me he recommend an open radical prostatectomy. He'd done thousands and thousands using Walsh's nerve-sparing technique and he liked that open approach better than the laparoscopic robot. Hmmmmmmmm.
This is my first experience with the principles of free market economy meeting medical advice and health issues, and it's perplexing. Each doctor starts to sound like a walking advertisement for whatever technique he happens to use.
I understand that the biggest factors are the skill and experience of the treatment provider and the facility you're using, but come on now. There's got to be a "best choice." The problem is that you won't hear what it is from anyone giving you supposedly "unbiased" medical advice. (Forget the people saying they're the ones to treat you with their particular technique).
At most your unbiased urologist will say something like, "Look, you're here on the map and you want to get over there. Lot's of roads lead to that goal, but we just don't know in every particular case whether one way will prove faster and more efficient than any another. Who knows whether the road conditions will cause delays if you take the interstate, as opposed to maybe running into an accident if you take the local streets. And you can never tell when you're going to have a flat tire that'll cause delays, or maybe more serious results." While I don't want to overdo this analogy, it seems to me that I'm supposed to decide, never having driven a car, which way to go. And it doesn't seem fair or right.
In a couple of days I'm going to see my urologist again after having seen 2 surgeons and the radiation guy, and what I'm hoping for is when I look him in the eyes and say, "If you were me, which would you choose?" he'll give me a plain-spoken direct answer pointing only in one direction on the map. You know, if he does that, his choice might not be the choice I make, but at least it would let me have some confidence that while anyone can be wrong, at least some treatment advisors have some measure of certainty or at least comfort in the way they look at this crazy world of prostate cancer.
I'll try to keep you posted, and wish you well in your decision-making process and treatment.
Later: My wife and I visited with my urologist December 4, '08 and had a great talk with him. After discussing my case with him for the 4th time, I'd come to the conclusion that either brachytherapy or a prostatectomy would be a cure for me, and that incontinence wasn't going to be a probable issue in either case. The last thing I needed to know, therefore, was which treatment would most probably have the least affect on my potency.
After a lengthy Q&A, I decided that if I truly at worst had a Gleason 6 tumor, (whether or not bilateral or simply on one side), given my diagnosis, age, and genito-urinary history of an active sex life with few, if any, complications, then brachytherapy with Palladium 103 permanent seed placements would have the least side effects on my potency.
However, to confirm--as much as reasonably possible--that the cancer has not gone beyond Gleason 6, I decided to have another biopsy, with greater focus on the 2 PIN sections that showed up on my first ill-fated (see above) biopsy. I've learned that the first biopsy probably had an 82% or so accuracy level and that having another one would improve that percentage by another 10 points. (After that, apparently each further biopsy only adds at most 1% more information and therefore seems almost counter-productive given the trauma to the prostate that biopsies can cause)
Bottom line: I decided that if the upcoming biopsy shows something like a Gleason 7 tumor, then it's a prostatectomy for me. If it shows Gleason 6, whether on one or both sides, then it's the Palladium seed implants. But . . . if it shows absolutely nothing (one can always hope, no?), then I'll consider active monitoring, and do quarterly visits to my urologist.
After having talked through the possibilities described above with my urologist, I did the old "look him straight in the eye," and ask him what he would do if he were me. When he quickly said, "If I were you, I'd do exactly what you've described."
At that moment, for the first time in weeks, I had a sense that I'd reached as much certainty as I was ever going to get, and that the process was finally starting to lead to the kind of treatment decision I'd always feel comfortable with--no matter what happens down the road.
Getting to this place has been emotional for me. Each person needs to do what he feels is right for him until he gets to this level of comfort, whether it's simply relying on one or two health care providers, or--as it was for me--spending weeks talking to doctors and reading and reviewing books and articles inches thick, and visiting with as many men who've been through as close to the same experience as you're going through. Speaking of which, the last thing I'm doing before I commit to taking the journey I've described, is to talk with at least a half dozen men who've gone through the same brachytherapy therapy, administered by the same radiation oncologist that I'm going to be using.
Given my earlier prostatitis and the upcoming holidays, I've decided to have the next/confirming biopsy after the first of the year. So, until then, you have my best wishes for as good a holiday season as possible.
It's now the beginning of the new year, and my 2nd biopsy is scheduled for next week. You'd think that I could just sit still and wait, but that's not me. For me, more information is always better information, no matter what it may be. So what did I do? I talked to my urologist about whether I should have another PSA test before they mug my prostate again with the next biopsy.
His answer was clear. He advised me not to go out and worry myself with another PSA test. He said that since I'd had a biopsy and a case of prostatitis back in late September, he wouldn't be surprised if my PSA was at 10 or higher, and not to worry about it. So what did I do? I ignored him and went out and got myself another PSA test through my GP. Why did I do that? I did it probably because there's still a part of me that wants to snack at that tempting buffet table of denial.
The test results came back today: PSA of 6.3 (up from 4.7), and a free PSA of 0.38. Hmmmmm. I guess it's now clear that my PCa hasn't spontaneously disappeared. And I guess I won't be eating from that damned buffet table an anymore.
I'll be back to you after next week's biopsy.
This prostate cancer experience is becoming bizarre. A few minutes ago I got off the phone with the assistant to Dr. E. David Crawford (well known University of Colorado Anschutz Cancer Pavilion doctor), who I went to for a second opinion in the middle of November 2008. She was contacting me to tell me that it was Dr. Crawford's opinion that I did not have prostate cancer. (Is this getting weird or what?).
She said that their pathologists examined my first biopsy tissue slides and concluded that I did have 2 areas of PINS, but that the cells that Johns Hopkins and the first pathologist identified as cancerous (the 5% of 1 needle), Dr. Crawford believed those cells were in fact non-cancerous cells. He identified them as "atypical small acinar proliferation" (ASAP) [This is one of four conditions that can be mistaken for adenocarcinoma but which are not demonstrably dangerous.] They recommend a re-biopsy (which they didn't know I was scheduled for this afternoon) or a "mapping" biopsy, which is done under general anesthesia where they take a very large number of cores.
I guess none of this changes anything since I'm still going to have the 2nd (regular 12 needle) re-biopsy this afternoon, but it's crazy that.
1) The second opinion took 2 months to get back to me (since by now, most people would already have had their prostate taken out--I understand that the average time between diagnosis and surgery is just around 2 months); and
2) that the biopsy I had looked at first and then re-checked by the number one prostate pathologist in the world (Dr. Epstein at Johns Hopkins) may have been mis-read.
I'm not sure what the message is for all of you: Maybe it's that one has to be exxxtremely careful before one makes any decision where the result will be irreversible. In most cases, a quick decision to remove the cancer asap (pun intended), may be wise. Then again, in other low grade cases where there's uncertainty, perhaps taking the lengthier process of getting as many facts as you possibly can might be a good decision. [Medical Oncologist Dr Stephen Strum says time and time again ASSESS STATUS BEFORE DETERMINING STRATEGY. Regrettably, as well known prostate cancer specialist Dr Charles "Snuffy"Myers has said "As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data".]
The story gets a little stranger, but the outcome is as good for me now at this point in the journey as I hope it may be you:
On January 12th, I had the second biopsy. It was preceeded by several days of both Levaquin and Flagyl, and concluded with a shot of Gentamicin, right after the procedure. Additionally, I doubled the preparatory colonic cleansing protocol. I was damn sure, after the re-biopsy, that there was no way in hell I was going to get another bacterial infection.
A day or two later, after I got the infection and my temperature started to rise over 100, I was put in the hospital. This time for 3 days. I was stuffed full of additional IV antibiotics I'd never heard of. They were so concerned about why I was running a temperature that they brought in a special infectious disease team to do the analysis and consultation. Three days later, after they released me, all the culture samples came back. They were all negative. I'm scheduled to do a follow-up with those interesting bug sleuths this week. We'll see.
The results of the infection, however, were the same as before: end-of-day fatigue and listlessness. I expect this to last for another 2-3 weeks or so, if my last experience is any indicator.
Now the good news. I was back at work and in a meeting last Thursday when I got a message from my urologist. He'd received back the pathology report on the second biopsy. He was going to send it to Dr. Epstein at Johns Hopkins for confirmation, but when I spoke to him he was happy to tell me that my second biopsy was completely negative. No carcinoma, no PIN, no ASAP. Not even any indication of the "chronic inflamation" noted as part of the first biopsy report. Of course, I'm going to send it to the lab/pathologist that diagnosed the ASAP and get their read on it. Just what I never thought I'd see--fighting pathologists.
So this is getting to be wonderful news, but the latest events don't answer the underlying question: Who's going to win the fight? Who was right on the first biopsy? Was it the first lab and Dr. Epstein's confirmation that I had T1c cancer correct? Or was the Anschutz Cancer Center at the Univ. of Colo. correct when it disagreed and said that I had an area of ASAP, in addition to the 2 PIN areas, but that I did not have cancer?
That's the question I'll now be focusing on, as well as developing a protocol for monitoring my condition and making some lifestyle changes that my guess is many of us could constructively use.
My best thoughts and hopes to you all. As I close for the day, I'm thinking about the tortured metaphor that I set out above when I talked about it not being fair that in this cancer journey you're told where you want to go, but not how to get there, and how wrong it is that you're expected to make the choices when you've never been through this before.
Well, now I think that metaphor may not have gone far enough. Maybe there's another lesson, whether its an emotional or medical, physical or spiritual one. Maybe the real lesson is that sometimes, you don't even know where you're going, but you have to drive, anyway.
February 12th: The mystery continues but a treatment decision is finally reached.
Johns Hopkins came back with a confirmation on my second biopsy--Epstein agrees its completely negative. My urologist's initial position was, "well, I have a couple of patients in your position and the plan is to have you come in every 6 months for a PSA test and another biopsy if the numbers indicate it." My response was, "well, that may be the plan, but first I want to know which of the pathologists was right on the first biopsy." Bottom line: Do I have prostate cancer or not?
Surprisingly, he said he thought we weren't ever going to be able to resolve that issue, and that the pathologists with the different conclusions on the first biopsy sample simply wouldn't come to an agreement for both "real world reasons" (could that mean one of them wouldn't want to admit to error), and "political reasons" (could that mean that no Johns Hopkins pathologist--especially not Epstein, himself, would ever admit that his institution had been shown up by some less experienced pathologist at a "junior" institution).
I told him that that kind of ego shouldn't be allowed to control the resolution of the issue, and that I wanted him to get in touch directly with the two disagreeing pathologists and get them talking to each other to see if they could come to an agreement. He's promised to do that and get back to me.
Regardless of the result, however, that won't change the treatment decision I've made. And that is--after over 3 months of investigation/testing/reading/talking/etc . . . to start the regimen of active surveillance, and make some lifestyle changes, including increasing physical activity, cutting back on red meats, fried food, etc., and moderating the nice vices such as a little too much alcohol sometimes, and poor sleep and work habits. If/when I find out anything about the whether or not I actually have cancer, I'll be sure to do an update. But for now, I'm joining the ranks of the watchful waiters and seeing my urolgist regularly.
Best of luck and wishes to you all.
It's now May and my urologist told me that while the Univ of Colo pathologist was willing to talk to me (Dr. De La Rosa) and explain why he thought I did not have cancer, Dr. Epstein at Johns Hopkins never returned his calls. Since I wanted the disagreeing pathologists to talk to each other, and since I'm not smart enough to do anything other than listen to what they have to say and nod my head appreciatively, I decided that instead of going through that waste of time I'd go to yet another urologist, explain the situation and have him forward my biopsy data to 2 more pathologists, one of whom would be the highly regarded expert on ASAP cells, David Bostwick back at the Bostwick Laboratories.
Well, the results are in from the Denver local pathologist (he's now the 5th pathologist to look at these slides!). His opinion . . . no cancer. So I'm 2 and 2. Two say cancer (the 1st pathologist and then Epstein), and 2 say no cancer (Dr. De La Rosa, the CU pathologist used by my original 2nd opinion doc (Crawford) and now the local pathologist at The Urology Center of Colorado who works with my second 2nd opinion doc, Dr. Craig Sakurada.
To break the tie I'm now having the data/slides sent to Dr. Bostwick. I've decided that I'm going with whatever he says as the actual result since he's one of the experts in atypical small acinar proliferation (ASAP) abnormalities.
The lesson for the likes of you all who have waded through this way too long series of updates: some people who consider having their prostate out because they've been told they have cancer, may in fact, not have cancer. Caveat emptor, you betcha (as Gov. Palin used to say:-)
Later: Confusion about biopsy samples, but a good conclusion:
After not hearing anything for weeks about Bostwick Lab's read of my 2008 (initial biopsy), I called both them and the Uropath people who are the custodians of both of my biopsy slide sets. It shouldn't have surprised me when I learned that Uropath had sent the wrong biopsy slides to be read by my 3rd-opinion doc--sending my 2009 slides to my 3rd-opinion doc instead of my 2008 slides.
Of course, I was upset when I learned that, but that was made up for when I learned that Uropath later sent the correct (2008) slides to my 3rd-opinion doc's second pathologist--the Bostwick Labs. Got their report today. Bostwick agrees that I have Atypcial Small Acinar Proliferation ("ASAP"), and not cancer.
So, to sum up:
10/08 biopsy was initially read by Colorado pathologist as 5% of 1 needle was T1C, Gleason 6, cancer in 11/08. That reading was confirmed by Epstein at Johns Hopkins. Minutes before second biopsy is performed in January 2009, 2nd-opinion doc (Crawford at CU Med Cntr, and his pathologist De La Rosa) call me and give opinion that first biopsy is ASAP and not cancer. Epstein refuses my request that he talk to De La Rosa to sort out confusion.
Colo pathologist reads 2009 biopsy and says no cancer, no PIN, no ASAP. Epstein agrees.
I have 2008 and 2009 biopsies and entire file reviewed by 3rd-opinion doc (Sakurada at TUCC) who tries to send 2008 biopsy to an in-house pathologist, but the Uropath folks send the wrong slides by mistake and he doesn't catch the mistake. Since he's reading the 2009 slides he agrees that they are completely negative. Sakurada, tells me that what he thinks are the 2008 slides--but are really the 2009 slides--are negative.
Bizarrely, Uropath subsequently sends Bostwick the correct 2008 slides. Bostwick's Lab faxes me Bostwick's reading, agreeing that while the slides present a "challenging" case, he reads them as showing ASAP and not cancer.
Conclusion: Who knows? Looks like I have ASAP in one biopsy (my first one), and a completely clear second biopsy. Prognosis: I will get another PSA test in mid-June '09 and see what's up. Given some interesting feedback from Yananow readers I've been taking an over-the-counter NSAID for a while, to hopefully lower my PSA number. We'll see.
September 2009: While my August PSA went down to 4.3, there was only 8% free PSA, so, once again, it was biopsy time. Given my history of ending up in the hospital with a serious infection each of the 2 previous times I'd been biopsied, my new urologist decided to up my prior Leviquin dose to 750 mg/day and give me an IV of gentamycin before the procedure.
The result has been great news on all fronts. First, it's been 4 days since the biopsy and I haven't developed an infection. And second, I just got a call saying that the biopsy results were completely negative. Not even any sign of the previous ASAP or inflammation.
So now my goal will be to keep working on lifestyle and OTC remedies to reduce the PSA numbers and promote prostate health, and hope for lower numbers in my next PSA test 6 months down the road.
Best to all of you, and stay optimistic.
After my September 2009 PSA of 4.3 I had my 3rd biopsy. Since I'd ended up in the hospital with a raging infection after the first two, this one, performed in-house at my new urologist's offices in Denver (TUCC), was done under a drip anti-biotic along with a shot of gentamycin. It resulted in a completely negative 12 needle result.
In March 2010 I had my next 6 month PSA test. The result was a decrease to 4.0 and a recommendation that instead of another (4th) biopsy, I have a PCA-3 test. Don't know which I'd rather have . . . probably the PCA-3. Am getting in touch with my insurance company for upfront approval since the test is not usually covered by insurance (but it's cheaper than a biopsy, so they should look at it as a bargain).
Best of luck to all.
It's been exactly one year since my last biopsy and PCA-3 test. The test came back negative, and the end of that chapter in my strange prostate story was a message from my urologist to come back in A YEAR for another PSA test. That would be right around now.
Conclusions/Lessons: My story is unusual and the importance of the fact that I don't have and probably never had prostate cancer shouldn't be overstated. I certainly wouldn't want anyone to assume that their story is identical to mine and wait too long for appropriate care and treatment. Rather, the message in my case seems to be that occasionally the data is or can be confusing. So get second opinions.
Bottom line: Where you are not sufficiently comfortable to go forward with the removal of your prostate, get the best help you can and get as much information as you can, to the extent your condition allows you to safely delay making your decision.
And as my friend and mentor, RHSF, used to say, "Better to be lucky than smart." [Indeed - but people who are smart tend to be luckier - as Gary Player used to say when he was categorised as a 'lucky' golfer. "Yes, I am. But I have noticed the more I practise, the luckier I get."]
A year ago, as my PSA; numbers were decreasing, and following my negative PCA-3 test, my urologist told me to have my PSA; tested in a year. That year has passed and I just got my test results back: 1.9. My PSA; numbers keep going down and my level of hope and appreciation keeps going up.
The bottom line is that when in reasonable doubt, get more information before pushing ahead with a course of treatment that is irreversible.
I'm not scheduled to get a blood test which will include my PSA; test for another month, and will file an update report then.
Just had my annual PSA test and the number came back at 3.0. Since my last one before that was 1.9, this spurred my internist doc to tell me to reschedule for another PSA test in 3 months, instead of waiting for another full year. So I'll get back to you in September. My best wishes to all, David
I was recently retested because my annual screening showed a rise from 1.9 to 3.0. Doc said he wanted to wait for a few months and try it again. Just got the results back and I'm down to 2.4. Based on that good news my doc doesn't want to see me for another PSA test for a year.
My best to all of you going through your news and decision making process. Remember: sometimes the only control you are going to have is deciding that you know enough to make a decision. In concluding that I suggest you perform the following thought experiment . . . imagine it's 2 years from now and you're looking back at the time when you decided what to do in responding to your diagnosis. Are you satisfied that you had the information you needed to wisely make that decision? If not. Get more info before taking the next step, whatever it is.
My thoughts and prayers are with you.
Just got my annual physical which came with a blood test PSA result of 2.7. Not a significant change from the 2.4 of a little more than a year ago, so my doc's simply told me to show up in a year and we'll go through this testing thing again.
Coincidentally, I just got off the phone with a friend who's had a significant elevation in his PSA over the course of the last year or two and he's being scheduled for a biopsy a month or so from now. So what's he doing (other than trying not to dwell on the issue over the holidays)? He's educating himself. He's talking to people. He's reading books/articles/websites/etc. Of course I told him about Yananow.org so he'll have all of your experiences and lots more educational sources at his fingertips. So that's all good.
Whatever way you're comfortable doing it, once you're given dramatic prostate news, you need to get enough information that makes you feel comfortable in moving through the process. There's no freight train bearing down on you. You're not tied to the tracks. You've most likely got lots of options and no absolute deadlines. But once you're there in that space where you don't feel overwhelmed, whatever course of treatment/diagnosis you choose, it's going to be OK. It's going to be OK because this is not an event. This is a process, and you have the time to make the decision that you reach from a place of calmness.
That's about the most you can reasonably expect from life, huh?
Best of luck and happy holidays to you all from cold snowy Colorado.
It's been over a year since my last PSA; and I just got the results back: 2.2 ng/ml, which is excellent news given my history. I have had no typical symptoms of prostate problems for many years now. No frequent or painful urination. No urinary tract infections or other health conditions generally associated with prostate-related issues. I am a very lucky person, and luckier still that I didn't jump the gun and have surgery or radiation therapy when in fact I needed none of that. My course of "treatment" is now just to have annual PSA; tests. I'm on no medications and no therapies.
If there's a lesson in my story for others it is that one needs to have as much information as possible before making what can be a very serious and potentially life-changing decision. So give yourself a break and do yourself a favor. This is probably a scary time. Acknowledge your fear but breathe deeply and don't cave in to it. It will lessen when you give yourself a chance to live with it for a little, to accept it, and to work through it by making carefully considered decisions about your course of treatment. Unless you're told you're in a true emergency decision where action has to be taken immediately (and I rarely believe that is true), take your time. Get as much information as you can and then have it double checked and then confirmed if there is any reasonable question about the "facts." Taking your time will give you the chance to be the decision maker and not just the passive patient to whom things are done.
Best of luck, David
Still just passive monitoring, along with annual PSA tests.
David's e-mail address is: firstname.lastname@example.org