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Posted 7/4/2014 12:14 PM (GMT 0)
With PSA 9.4, Gleason 3+4, PSA density 15, 1 of 24 positive (1mm of 16mm), am I a candidate for AS? Some of you suggested I might be when I first posted my diagnosis last week, but most of my research says the Gleason should be no higher than 6 for AS.

When my doctor told me the diagnosis he also said that 7 of 10 urologists might recommend that I consider AS. He said he would be 1 of the 3 who would not recommend it. My cancer is small but located in an area near the seminal vesicle and he thinks it is prudent to move forward with surgery.

Delaying treatment allows my wife and me to follow through with some plans we’ve made for perhaps the rest of 2014 and maybe even longer if the cancer doesn’t worsen. On the other hand, if the cancer does worsen and Gleason changes to 8, my proton treatment would probably have to include adding HT. That outcome would dwarf any benefit from delay.

I have an appointment at UFPTI for the combo session on July 21 to prepare me for 8 weeks of treatment starting in mid-August. If I should decide to try AS for a while and cancel the proton treatment, and a few months later decide I can’t handle AS emotionally or I have other indications that the cancer is worse, I would probably have to have start all over with another biopsy, 2nd opinion, and all the paperwork for UFPTI treatment.

I'd like to consider AS, but maybe biting the bullet and not delaying what is probably inevitable is what I should do.

No easy answers are there?
Posted 7/4/2014 12:55 PM (GMT 0)
The PSA itself is another concern. I thought PSA density was a decimal. e.g. .15 .
I don't think there would be a need or benefit in obtaining another biopsy within a year, unless it we're an mpMRI biopsy.
Am thinking you should be able to defer treatment till next year at least. Good luck.
Posted 7/4/2014 1:45 PM (GMT 0)
With a PSA that high, GL 7 and a small amount found on the biopsy, I would be worried that the biopsy missed some cancer. It's a possibility since the biopsy is random. I wouldn't make an AS decision until you knew for sure how much cancer you really have.
Posted 7/4/2014 1:55 PM (GMT 0)

teddydog said...
With a PSA that high, GL 7 and a small amount found on the biopsy, I would be worried that the biopsy missed some cancer. It's a possibility since the biopsy is random. I wouldn't make an AS decision until you knew for sure how much cancer you really have.

Are you thinking I should have a multi-parametric mri to see if other suspicious areas show up or the maybe the very small cancer I know about is actually a tiny piece of a larger amount? VCU has this capability and is within driving distance. I spoke with them yesterday and the earliest I could have the scan is mid August, which means cancelling my UFPTI appointment.
Posted 7/4/2014 3:14 PM (GMT 0)
Why are you rushing?

"I have an appointment at UFPTI for the combo session on July 21 to prepare me for 8 weeks of treatment starting in mid-August."

You have every indication that you should NOT rush. I can't believe there would be a righted-minded doctor, or a knowledgeable PC brother in the world who would suggest that you rush into aggressive treatment after finding a tiny piece of natural aging.

Yet it seems like you are rushing.

The word "cancer" often causes a "get it out now" reaction because of our societally concept of equating "cancer" with painful, and certain, death. That's just not what happens with favorable risk PC. From what you've written here, you've got some more "patient education" to go through to be sure you understand the "natural history" of PC.

Don't take aggressive treatments lightly...they make forever changes that many men before you have underestimated. There are pages full of stories here (note in particular other men's postings with favorable-risk PC)...


Added later as an edit: Also, don't think of "AS or treatment." It's not an "or." AS means successful treatment if and when it is needed. For about 30% of men it is eventually needed and they move on to be treated AT EXACTLY THE SAME SUCCESS RATE as those who sought immediate treatment. Those men were successful on AS because they were treated when they needed it...but the huge success is all the other men who completely avoided unnecessary aggressive treatments.



edited typo

Post Edited (JackH) : 7/7/2014 9:51:20 AM (GMT-6)
Posted 7/4/2014 3:27 PM (GMT 0)
What's your PSA history? Velocity or doubling time is a major determinant of PCa aggressiveness. 9.7 is high, but more importantly what has it been in last few years? I had low volume as well, but PSA velocity was high and I had Gl 9. With Gl 7 if your velocity is high, I would get treatment.
Bob
Posted 7/4/2014 4:31 PM (GMT 0)
Tertiary cancer centers that give mpMRIs or CDUS, and have superior radiologists who can properly interpret them, are increasingly allowing men with insignificant amounts of GS3+4 into their AS programs. They reason that the advanced imaging capability allows them to track the cancer pretty accurately with image-guided repeat biopsies, and the time to treat is when GS4+3 is detected, or the cancer volume increases measurably.

Focal ablation may also be a possibility for you. I think of it as a way of extending the time (perhaps indefinitely) that one is on AS.

I think you meant your PSA density is .15, which is normal. It's a good idea to have your biopsy results confirmed by Bostwick or Epstein.

- Allen
Posted 7/4/2014 5:14 PM (GMT 0)
Yes, per my other post, you may want to confirm that what they found is not part of a larger portion of cancer not detected on the original biopsy. I would look into getting an MP MRI before you decide to do anything. Also the PSA velocity is a good indicator as others have mentioned. It would be prudent to have a full picture of what is going on. In my boyfriend's case, it was clear. GL7 and he needed treatment. He chose surgery and is doing well. It's been 18 months. Undetectable, some drips, but not bad. Erectile function is returning.
Posted 7/4/2014 5:35 PM (GMT 0)
Most docs I talked to said GS 7 or higher most likely pushed you into a treatment group and not a candidate for AS. Check out the NCCN guidelines to help you. It depends as well on your age and health etc.
Posted 7/4/2014 7:18 PM (GMT 0)
Hrpu, of course it's your body and you have to make the decisions. And, I'm certainly no doctor but since you asked I think that at your age (68 I recall?) with the info you have in hand I think proton therapy or any other radical treatment is massive overkill at this point. You MAY need to do something but maybe not. If it was me I would stay in the info gathering mode a little longer. Specifically:

1. I recall (?) that you have sent your biopsy slides to JHU for a re-read. You should wait until you see the results of that before jumping to anything.

2. Assuming your Gleason, number of positive cores and % stay at or below the first reading then many of the well known AS programs would consider you as a candidate. You may want to contact Dr. Carter at JHU or the UCSF program to get their opinion. Again, if it was me, I would certainly pick an AS "artist" rather than my garden variety uro who may not have the appropriate experience in this protocol. If your scores come back worse you can certainly make other decisions based on that new info.

3. I recall that you have inquired about MP-MRI. If you are considering AS you certainly want to have this done. Most major AS programs require this or a confirmatory extensive biopsy.

4. If you are insistent about having "something" done, have you considered focal therapy? Search for member Ziggy 9 and you can see why he considers himself the most successfully treatment member of HW.

Additionally, I know that 142 has given you info about how to create a signature. I would recommend doing that so you don't have to retype your stats each time and so it's easier for the rest of us to know the baseline before responding to your posts.

Jim
Posted 7/4/2014 7:39 PM (GMT 0)
PSA history:
1/04 1.48
5/04 1.26
5/05 1.47
5/06 1.41
7/07 1.59
9/08 2.13
9/09 2.39
10/10 2.34
03/12 3.41
09/12 4.18
01/13 4.95
03/13 5.18 biopsy 12 cores negative
02/14 6.00
05/14 7.00 start 4 weeks cipro
06/14 9.40 24 core biopsy 1 positive GS 3+4 1mm of 16mm .1528 PSA density <4 pca-3
Posted 7/4/2014 8:15 PM (GMT 0)
The last year is a pretty sharp rise. I would investigate further and not make any major treatment options until you know what is going on. Your PSA rise makes me think you have more going on than what you saw on your biopsy.
Posted 7/4/2014 8:38 PM (GMT 0)
My doc thought that the rise in 3 months from 6.1 to 9.4 was due primarily to prostatitis. I got real sick in April from gallstone lodged in my bile duct and got an e coli infection and was in the hospital for a few days. When I got out I went to my primary doc for blood test to see if my liver enzymes had returned to normal. The lab also mistakenly tested the PSA and it had risen from 6.1 to 7.08 in 1 week. My free PSA had fallen to 7% from 16%. My primary and uro docs thought I had urinary tract infection that maybe involved the prostate. Cipro was prescribed for 4 weeks, The uro doc said prostate infections are very hard to eradicate and it may take more than 1 treatment of Cipro. When I returned 1 month later and PSA was 9.4, free PSA had moved to 14, and even though PCA-3 was <4, I insisted on saturation biopsy.

Post Edited (hrpufnstuf) : 7/4/2014 4:09:00 PM (GMT-6)

Posted 7/4/2014 9:06 PM (GMT 0)
The biopsy results are not bad if you are 68 .
If you get a mpMRI in the future some day, they my not need to take very many core samples.
Posted 7/7/2014 3:15 PM (GMT 0)
Hrpufnstuf, my biopsy had one core of Gleason 7 (3+4), 15% involvement, and I am scheduled to formally join the MD Anderson Active Surveillance group in September. The doctor running the AS group at MD Anderson told me that there are 800+ patients in the group, and 15% of them are Gleason 7.
Posted 7/7/2014 4:31 PM (GMT 0)
Lefty, thanks for reply. Good to know. MDA is too far for me to travel (assuming one has to meet periodically with docs conducting AS). I hope JH's upholds my GS 3+4 in their 2nd opinion, and that VCU has an AS program. I know they have MP-MRI and MRI-guided biopsy capabilities, but not sure if they follow a formal methodology.

I must decide something soon as I have appointment on July 21 at UFPTI for consultation and 3-day workup before treatment starts in mid-August.
Posted 7/7/2014 4:58 PM (GMT 0)
hrpufnstuf,

You are in Virginia?  Norfolk far for you?  (probably not if you are looking for best-in-class care and are also considering the University of Florida)  The Eastern Virginia Medical School is in Norfolk and has a solid AS program at The Paul Schellhammer Cancer Center. 

Paul Schellhammer is a famous urologic surgeon who treats prostate cancer, and he also had prostate cancer. Dr. Schellhammer spoke recently at an active surveillance conference and shared his perspective on this treatment strategy. He characterized active surveillance as a paradigm shift in the way patients will and should view their prostate cancer. He explained that when most men are diagnosed with cancer, they think about wanting a cure, and they think of themselves as being at war with their cancer. It also turns out that due to the relatively low mortality rate of prostate cancer, patients usually end up considering themselves a cancer “survivor” and a cancer “warrior”. Conversely, men opting for active surveillance will have a completely different outlook in that they are not seeking a cure for their cancer, they are not at war with cancer, and the goal is to be at peace and co-exist with the cancer. This is counter-intuitive to most other cancers where the entire focus is on cancer cure.

If Eastern Virginia Medical School is too far away for you, then you should consider contacting them to recommend a physician specializing in AS in YOUR area.

Posted 7/7/2014 6:00 PM (GMT 0)
Nkinney, I live in the Piedmont of NC and am roughly 4 hours from either Richmond or Norfolk. I will investigate the Norfolk program. I was raised in the Richmond area, went to school for a time at VCU and have friends in the area. Of course the main consideration is which facility has the better program.
Posted 7/7/2014 7:06 PM (GMT 0)

hrpufnstuf, I also used to live in the Piedmont area.

This link suggests (in NC) contacting Duke Comprehensive Cancer Center specifically for finding a doctor supporting AS: http://www.active-surveillance.com/active-surveillance-programs/

It really is important to find a knowledgeable, supportive doctor...and to realize that not all urologists will suggest AS to patients even if they believe it is the best course of action (probably for financial reasons). In a brand new article just published in Medsacpe, data from surveys of physicians showed that:  "Most prostate cancer specialists in the United States believe AS effective and underused for low-risk prostate cancer, yet continue to recommend the primary treatments their specialties deliver."

No real surprise...but a fact that the patient community should be at least aware of.

Posted 7/7/2014 7:22 PM (GMT 0)
"With a PSA that high, GL 7 and a small amount found on the biopsy, I would be worried that the biopsy missed some cancer."

Agree with this.
Posted 7/7/2014 8:02 PM (GMT 0)

Buddy Blank said...
"With a PSA that high, GL 7 and a small amount found on the biopsy, I would be worried that the biopsy missed some cancer."

Agree with this.

Certainly a concern, if not a worry. I don't know what the protocol is for AS, but I assume it would involve a MP-MRI to access the area where the biopsied cancer was found and to look for other suspicious areas. If it is not the protocol of the AS facility, I would have the scan before making the decision to proceed with AS.
Posted 7/7/2014 8:16 PM (GMT 0)
hr, your comment is prudent.   Please read the several (3) posts   I’ve made in another concurrently running thread by RobertT called “Newly diagnosed, should I be seeking anything else at this time?”   The issues of TIME I commented on there are also completely relevant to your case. Of course.   It appears on the surface that the issue of “risk” pointed out by Buddy Blank is really the one thing that a patient on AS has to concerned about . The fact is that there is both “upgrading” and “downgrading” of disease which occurs over time, and while one may intuitively want to assume the worst, it actually turns out in large populations studied that downgrading happens in cases of low-risk PC at about the same rate as “upgrading.” One of the rules-of-thumb in the PC-world is that if you are initially diagnosed with favorable-risk prostate cancer and you move to aggressive treatment without waiting for a second, confirmatory biopsy, then you have put yourself at high-risk of being overtreated.   I’d encourage you to use the element of TIME which is in your favor to find and consult with a urologist who is very knowledgeable in AS, and see what your confirmatory biopsy indicates.   You might proceed successfully to treatment at that point in time, but there is a good chance that you won’t have to.  As I pointed out earlier, outcomes of favorable-risk men being immediately treated is the same as those who initially go onto AS. One never has “TIME” if one rushes into aggressive treatment.
Posted 7/7/2014 8:36 PM (GMT 0)

Jack, when you said...
The fact is that there is both “upgrading” and “downgrading” of disease which occurs over time, and while one may intuitively want to assume the worst, it actually turns out in large populations studied that downgrading happens in cases of low-risk PC at about the same rate as “upgrading.”


you may have been oversimplifying the research a bit. Yes, there have been large population studies that found the rates of upgrading and downgrading roughly the same, but there have been a number of smaller studies that found upgrading occurring in the low 40 percent range while downgrading was in the low 20s.
Posted 7/7/2014 8:39 PM (GMT 0)
PDA, I find the larger population studies to be more meaningful and less anecdotal.

Here's a page from JHU which speaks (similar to this discussion) about upgrades/downgrades of GS7 patients after RP. Big picture, it's about equal both ways...

http://pathology.jhu.edu/department/services/consults/urologic2.cfm
Posted 7/7/2014 10:46 PM (GMT 0)
If it were me I'd treat it due to a G7 and the PSA. Seems to me you will have to treat it sooner or later. Waiting just might allow the cancer to become worse.

I am not a doctor, or any PCa expert - just my 2 cents.
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