My story...

John T said...
John T said...
Jim,
Your case is exactly the reason for the current flap of giving men psa tests. If they did a 34 core biopsy on all the men your age, 50% of them would have a positive biopsy, and if you were older the % positive would pretty much match your age. I hope your doctor explained this to you because it is important in the fact that most men over 50 have PC in thier bodies. It is also obvious that 50% of men over 50 never get treated for PC and very few die from it. Prostate Cancer runs the entire gamut from being very benign to being very agressive. The benign stuff (gleason 6, low positive number of cores) does not kill people, except if you have a rare varient.

John T said...
Take a deep breath, because in the very worst case you might get symptoms in 15 years if you did nothing and in the best case you will die from something else in your 90s. In any event you have years before you even have to do anthing about it.

John T said...
Indolant cancer clusters are very common, sometimes they disappear on their own, most of the time (70%) they never progess to the point that would hurt you and some of the time they progress, but if treated the cure rate is exactly the same as if treated immediately.
All of this should be good news. The best news is that the biggest danger in waiting to do anything is that the traditional 6 or 8 core biopsy may have missed an agressive cancer. The fact that you had a 32 core biopsy and they only found one spot is an excellent indication that it is indeed indolant.

John T said...
You will hear various opinions on this board, but the facts are that you have years to decide what to do with out any danger. In your case if you sought immediate treatment you would be treating fear rather than a disease. Take your time and evaluate all options.

John T said...
Get an opinion from a doctor that is experienced in active surveillance or look at the trials going on in AS at Hopkins and UCSF. Google Laurence Klotz and read about his studies on AS. Bone up on all the side affects of various treatments.

John T said...
The fact that over 50% of the posts on this forum relate to dealing with the side affects of surgery should tell you something. You will also hear a lot of things about other treatments such as radiation and seeds that are myths (the rate of impotence after seeds is much less than the impotance after surgery and does not get worse after the 2 year mark).
The basic undisputable fact is that with a low core gleason 6 every treatment option, including doing nothing results in a long life with a very small chance of any symptoms in your lifetime. In fact the results of every treatment is exactly the same in cure rate and disease specific death. You will also hear that young men should never go on AS. The facts don't bear this out as it is the type of PC, agressive or non agressive, rather than age that is the real factor in progression.
Good luck on your journey, it will be a long one and will affect you psychologically more than bodily.
JohnT

Hi Selmer,

My dad has had 3 biopsies that I know of. The last one was with the same doctor I am seeing. He is a self proclaimed expert at finding cancer. The doc told me, "your bad luck is coming here to see me. I always find the cancer. I am your bad luck." :P My dad's PSA has been above 8 before. He's currently on Avodart, but the doctor insists he doesn't have PCa. I have a younger brother, he's been alerted about my situation, but we don't really speak.

Selmer said...
Jim, you state the following in one of your replies...

"My dad is in his 70's and has an enlarged prostate. I thought this was to be my path but alas no. I guess that's why I took the news so badly. I KNEW I didn't have it."

I'm assuming your dad has never had a biopsy?
Do you know his psa history?
Any brothers your age or older?

Good chance if they poked your dad 32 times they'd hit at least one positive sample.
But goodness, I'm not suggesting he do that test/biopsy.

Regarding your doctor's push for a decision only 5-6 weeks after diagnosis....
That is just madness given your 1 in 32 Gleason 6 result.
I'm sure he means well, but he does not appear to be the kind of urologist who can give you a well reasoned choice of paths with which you can make the optimal decision for your life.

A second opinion from a unrelated urologist, perhaps in a major medical center, is a must.
Indeed, it doesn't sound like your next visit to your urologist is gonna be very productive until you learn more and get a prior second opinion.

Oh and as some others have indicated, you need your 32 samples read by a second expert.
Also in that one cancerous sample, find out what percent of the core was cancerous.
It can range from 5% to 90%...with the lower number being the better number.

Its too bad you got that scary "cancer" word and were kind of left on your own. Some of us who have had fathers with prostate cancer don't find it quite so alarming. My dad was 63 when diagnosed, and with a case that was past the point of being operable, many years more advanced than anything you might have. He freaked out and thought he was going to die soon. 25 years later, nearly 89 years old, he died of unrelated causes.

Selmer

Heavy Leaker said...

Jim,

The purpose of this post is not to frighten you but to relate my experience to you.  Active Surveilance is always a good action to consider.  However, biopsies are not always indicative of the extent of Prostate Cancer.  ....  By that time my PSA was up to 18.  ....  However, AS would have been a big mistake in my case & if I had radiation instead I would have always wondered if I even needed any treatment.  ....  Again, I am not trying to scare you or anyone else but therer is a flip side to Active Surveilance.  My apologies to anyone recommending AS.  I just want to present a case that biopsies don't always show the true extent of cancer. 

Just to be clear for Jim, who is in learning mode, no doctor would have recommended you (Heavy Leaker) for Active Surveillance/Deferred Treatment when your PSA was 18.

One would never take a single piece of the data puzzle and ignore the rest...one with never look only at a biopsy finding without also considering PSA, and similarly one would never look only at the PSA without considering biopsy findings.  However, when both are indicating very low risk (as in Jim's case, but not in Heavy Leaker's case), then the Active Surveillence/Deferred Treatment approach should be strongly considered.

The fact is that with Active Surveillence/Deferred Treatment, one will regularly review new data, new results and also new developments in research which may, at a later date, significantly alter the balance between risks, benefits and uncertainties.  This, to me, is one of the strongest arguements in favor of a very low risk patient of any age simply saying, "Wait, let's see what this tiny amount of slow-growing cancer in my prostate is going to do before over-reacting."  With some lifestyle modifications to diet, exercise, stress, etc., perhaps the further growth can be fully arrested, or further slowed, to the point of never having to do anything other than simply watch it closely.

Just wanted to make sure Heavy Leaker's comment was taken in balance of the big picture.

best wishes...

Casey59 said...

Heavy Leaker said...

Jim,

The purpose of this post is not to frighten you but to relate my experience to you.  Active Surveilance is always a good action to consider.  However, biopsies are not always indicative of the extent of Prostate Cancer.  ....  By that time my PSA was up to 18.  ....  However, AS would have been a big mistake in my case & if I had radiation instead I would have always wondered if I even needed any treatment.  ....  Again, I am not trying to scare you or anyone else but therer is a flip side to Active Surveilance.  My apologies to anyone recommending AS.  I just want to present a case that biopsies don't always show the true extent of cancer. 

Just to be clear for Jim, who is in learning mode, no doctor would have recommended you (Heavy Leaker) for Active Surveillance/Deferred Treatment when your PSA was 18.

One would never take a single piece of the data puzzle and ignore the rest...one with never look only at a biopsy finding without also considering PSA, and similarly one would never look only at the PSA without considering biopsy findings.  However, when both are indicating very low risk (as in Jim's case, but not in Heavy Leaker's case), then the Active Surveillence/Deferred Treatment approach should be strongly considered.

The fact is that with Active Surveillence/Deferred Treatment, one will regularly review new data, new results and also new developments in research which may, at a later date, significantly alter the balance between risks, benefits and uncertainties.  This, to me, is one of the strongest arguements in favor of a very low risk patient of any age simply saying, "Wait, let's see what this tiny amount of slow-growing cancer in my prostate is going to do before over-reacting."  With some lifestyle modifications to diet, exercise, stress, etc., perhaps the further growth can be fully arrested, or further slowed, to the point of never having to do anything other than simply watch it closely.

Just wanted to make sure Heavy Leaker's comment was taken in balance of the big picture.

best wishes...

 I would like to clarify my prior post.  First let me give you a 17 year history of my PSA as I started tracking my PSA shortly before my father died of PCa:

December 1992 PSA 1.3
December 1999 PSA 3.0
March 2001 PSA 3.4
December 2005 PSA 6.0
November 2006 PSA 9.3
December 2007 PSA 9.9
December 2008 PSA 13.2
April 2009 PSA 18.0

Next, please remember that I had 3 biposies before the one that showed cancer in only 1 core of the 12 taken & that core was only 5% cancer Gleason 3+3=6.  These biopsies were done in January 2006, December 2007, December 2008, & April 2009.  My Doctors concluded that since I had 48 cores done over 4 years & that only 1 showed a small amount of cancer that the high PSA was due to chronic inflamation of the prostate & that I could be a candidate for AS with PSA tests done every 3 months & biopsies every year.  However, the final decision was up to me & my Doctor said that if I were his brother he would recommend external beam radiation.  As I stated in my post above, the high PSA concerned me & after the terrible death my father had, I felt that I would prefer to err on the side of attacking the disease aggressively.  I paid for that decision with my current battle with incontinence but I have a very good chance that all of the cancer is gone.  I hope to avoid salvage radiation & hormone therapy.  The 4th. biopsy showed Gleason 6 in a very small tumor.  The pathology showed Gleason 7 in 30% of my prostate & cancer was found up to 3 mm from the margin.  How long would it have taken to have the cancer escape my prostate & perhaps has it escaped before the operation.  I don't know but I do know that having the prostate removed takes out the tumor & at least now there is no prostate for the tumor to grow in.  I also have read here about the suffering physically & emotionally that men & their wives have gone through with PCa much worse than mine.  I choose to concentrate on saving my life & being here for my family.

Again, this post is not designed to frighten Jim or anyone else.  It's just that there has been a lot of news lately about overtreating PCa & I'm sure there are many of us who wish there cancer had been discovered & treated before it spread.  Look at the "zero club" postings & you'll see the anxiety that many men face.  Jim, you may be a perfect candidate for AS but I would definitely get several opinions before taking that route. Actually, I did go through a period of AS for 4 years as my PSA rose but once the cancer was found I wanted it out of me.  I am not saying to make a quick decision & quite frankly you may not make a decision for a long time.  My point is that a biopsy is only a very small sample of your prostate.  As John T did, you can do a lot of research & seek additional opinions before you come up with the right treatment for you.  I am just concerned, that considering your fears that you might only hear the words, "go for Active Surveilance!" 

 Actually, I did go through a period of AS for 4 years as my PSA rose but once the cancer was found I wanted it out of me.  I am not saying to make a quick decision & quite frankly you may not make a decision for a long time.  

Heavy Leaker,

Thanks for your note.  The whole point of any of us posting here in this thread is to help give Jim good inputs, and it is my sincere hope that we are all keep striving for that. 

I have highlighted, above, one of your key points that many overlook when they speak of "Active Surveillence."  It's not a lifetime, irreversible commitment.  For many, it becomes a choice of "deferred treatment"...for some, deferred forever, for others deferred if-and-when the indications change.

Speaking more broadly, I will echo your voice that while we (collectively, certainly all of "us" who have undergone radical treatments) don't want the "overtreatment" pendulum to swing too far back in either direction.  I would hope that we want to strongly support the mantra I've put forward of "aggressively treating all those who need aggressive treatment, and not aggressively treating those who do not need aggressive treatment." 

Unless you would like to add further comment, let's swing the focus back to Jim.

best wishes...

I have received my book by Dr. Strum today! :D I'm not a fast reader, but I will do my best to read it all. I have now started a notebook of sorts...

It has my questions for the doc.

My to do list, scratch the book off the list!

Quotes from some of you guys.

I have so much work to do concerning AS. I'm going through the PDF JohnT emailed me.

What I'm going through... Easily sucks a golf ball through a 100' garden hose! I'm glad you guys are here to help in whatever capacity you chose. Thanks!!!

I am not really the same person who wrote the first post. I was blowing off steam at the ridiculous position this disease has put me in. I have become a lot more calm, and am not panicking at the drop of a hat anymore. I am getting more used to the bizarre biological poking, and prodding that comes with this  But honestly I don't feel the need to apologize to anyone for not being the nerves of steal super man you think I should be. I have other positive traits that make me a good person and I sleep very well in that regard. I wish you all the best though.

I finally have received some reports.

I asked the doctor where my tumor was located. I faxed over a 2D diagram asking him to draw an X where the tumor is. He wrote on the paper. "Left Peripheral Zone" Sigh...

Peoria Tazwell Pathology Group

Final Diagnosis 2/8/10 by Ronald Champagne, MD

A. Prostate, left transitional zone, needle core biopsy:

• Benign Prostatic Tissue
• Chronic Inflamation
• Focal Glandular Atrophy

B. Prostate, right transitional zone, needle core biopsy:

• Benign Prostatic Tissue

C. Prostate, left peripheral zone, needle core biopsy:

• Prostatic Adenocarcinoma, Gleason's Grade 3+3 (score 6) involving approximately 10% of the submitted tissue specimen
• Negative for Perineural Invasion
• Focal High Grade Prostatic Intra-Epithelial Neoplasia

D. Prostae, right peripheral zone, needle core biopsy:

• Benign Prostatic Tissue

I was told by the doctor that I had one core test positive for cancer and one core test positive for abnormal cells. But I read on the report.

Microscopic description:

C. Specimen C consists of multiple needle cores of prostatic tissue in which foci of approximately three needle cores reveal prostatic adenocarcinoma with the primary and secondary Gleason's pattern 3 with a score of 6. The tumor involves up to 10% of the submitted tissue specimen. There is no perineural invasion or lymphatic/vascular invasion noted. Associated with the tumor are foci of high grade prostatic intra-epithelial neoplasma.

My PSA history...

8-7-09  3.22

11-13-09  4.25

That's all I have so far...

Hi Selmer,

He did in fact take 32 samples. He knew my anxiety concerning the "awake" office biopsy, and he probably figured that it was his one chance so he went for it. But actually I believe he routinely does 32 core biopsies. I will ask for a more clear description, but my best bet is probably having someone else look at them. Thanks for writing me.

Selmer said...
"C. Specimen C consists of multiple needle cores of prostatic tissue in which foci of approximately three needle cores reveal prostatic adenocarcinoma with the primary and secondary Gleason's pattern 3 with a score of 6. The tumor involves up to 10% of the submitted tissue specimen. "

It would be nice if the report detailed how many needle cores you actually had in total.
Originally you said 32, which sounded high and unusual for a first time biopsy.
This report doesn't seem to clarify that issue.

Additionally what does "approximately three needle cores" mean? Its either 2 or 3 or 4 or it isn't.

Saying the tumor involves "up to" 10% of the submitted tissue specimen.... Which specimen?
10% of each of the three needle cores? .
I think it only means that none of the 3 exceeded 10%, which is good.

Personally I'd want to know how many total cores were taken and from where.
Exactly how many were found to have adenocarcinoma and what percent of each of those, although "up to 10%" is probably the lower reporting percentage they choose once it passes zero percent.

All in all 3 positive cores is more than 1, but at 10% or less each and with your psa level there is no need to rush into any treatment choice. You have lots of time to get comfortable with your knowledge and learning. Do not rush until you know much much more about all your options.

Selmer