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Higher Biopsy Gleason vs. Lower post surgical pathology Gleason

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Posted 1/10/2014 1:45 AM (GMT 0)
How many of you had a higher Gleason score from the biopsy that turned out to be lower when the final post surgical pathology came back?

I've read that it's usually quite unlikely that Gleason will decrease and very common for it to increase in the final pathology. I think Cajun Jeff was one who had a lower Gleason after the final pathology.

Why does this happen? I've mentioned in another post that it was troubling to me to be rated a Gleason 7, and make decisions based on that, only to find out I was really a Gleason 6. I feel cheated from the ability to attempt AS. My PSA's were so high that maybe it was a good thing in the end but I wonder how many have been through this and if they had a similar reaction to being upset they were given inaccurate info about their condition?

If you did get bad info, if you could, would you go back based on the actual lower number and do something different?
Posted 1/10/2014 2:05 AM (GMT 0)
I went from a Gleason 7 (4+3) from biopsy to Gleason 7 (3+4) post surgery. Should have been a good thing, but made no difference. Surgery failed fast. Salvage radiation failed fast. Now dealing with advanced PC. No such thing as normal logic when dealing with PC.

I believe someone here, perhaps JohnT, showed stats once, that showed there were about as many upgrades to Gleason's post surgery, as there were down grades. I could be wrong, but that is what I seem to remember.

Why does it happen? Because at best, a biopsy is but an estimate of what is going on. And even with a skilled pathologist, there is still a subjective line between interpreting what they are looking at. That is why is so often recommended, to have a second higher opinion of one's biopsy slide before deciding a primary treatment. I am one that wished I had done that, but I didn't know to at the time.

David
Posted 1/10/2014 2:17 AM (GMT 0)
David, I'm sorry to hear that...hope that doesn't sound like offending pity from my end. I just feel for what you've been through.

I went to an oncologist after my urologist to have a 2nd opinion done. He was the one who recommended surgery or radiation with hormone therapy. I found it interesting when I told my uro who diagnosed me that information, he laughed out loud. He was shocked and asked me for the guy's full name. he seemed to indicate by his body language that the doc who gave me that info was a quack but he was a highly respected oncologist at UT-Southwestern in Dallas. He gave me a 2nd opinion of an upgrade of my 3rd Gleason core to a 3+4 from a 3+3.

What I'm learning is there is no set roadmap and even if your numbers look good it's never truly over like Jason horror movie, and if it looks dire, there's always hope. Each individual situation is as unique as the individual involved.
Posted 1/10/2014 2:27 AM (GMT 0)
Hi,

The most plausible reason for a pathological Gleason score to be lower than a clinical one based on a TRUS biopsy is that the clinical GS was misread. This is why it is absolutely imperative that a man get a second opinion on the biopsy from an expert pathologist such as Dr. Jonathan Epstein at Johns Hopkins University. (Of course, it is also possible that the pathological GS was the one that was misread. This is nowhere as crucial since the initial clinical GS often determines the course of treatment.))

I speak from personal experience. The reading of my biopsy was done by the general pathologist working for the hospital where I had my TURP procedure done. Based on a GS7, my urologist was recommending radiation for treatment. This was so even though less than one percent of 25 grams that was biopsied was found to be cancerous. I turned to Active Surveillance after Dr. Epstein evaluated the biopsy as a GS6.

Marvin
Posted 1/10/2014 2:28 AM (GMT 0)
Don't worry, didn't view that as pity, nor do I seek any. Just telling it like it is, at least in my case.

"Normal" should never be used in the context of anything PC. There are mathematical averages, of course, and percentages that can extrapolated, but nothing is ever normal.

Going to an oncologist after getting your dx. was a wise and highly recommended move on your part. All men should do that. As its generally know, many uro's are surgeons, and have a surgery bias, and many RO's, by nature of course, have a radiation bias. This is to be expected. But a good oncologist will have no dog in the fight, and should be more interested in giving a neutral bias when it comes to a primary or secondary treatment recommendation.

I don't think many would find an oncologist from UT-SW-Dallas to be a quack. For him to laugh, speaks volume of that doctor, if you follow my drift.

With have men here, with terrible numbers on paper, that are doing very well for themselves years later, and men with fairly benign numbers, that aren't doing well. You got guys that had advanced nerve sparing ops, with total ED even 2-3 years out, and then the rare ones like me and a handful of others, that had non-nerve sparing op with zero ED. When you shake it all out, you can never guess or accurately predict what you are going to end up with.

But like you said, never give up hope. I have seen some amazing turn arounds here in my 5 plus years at HW PC. And I have seen some really sad stories too.

Takes all of us to make this place work. While each of our journeys are unique, we still fight the same common beast or enemy, and that is what ties us all together.

From looking at your stats, you are doing pretty well on all fronts. Just going to take some more patience on your end. Your young age amazes me though. I was 56 when dx, and my uro said at the time, that I was one of his youngest PC patients he had ever had. You were 10 years younger than me when your dx, so I feel for you there, as I do the other's here in the 40 club. Hope you continue to do well in the future.

David
Posted 1/10/2014 2:37 AM (GMT 0)
I had a biopsy at PSA of 3.3 with a negative DRE. I had 1 core positive of 12 taken and that 1 core was 30%. LIKE YOU, I was graded at Gleason 3+4=7. After surgery, I was downgraded to Gleason 3+3=6 with a 67 gram prostate that was 10% involved with PCa. No positve margins. It has been 2.5 years since surgery and all my tests are <0.015.

Once in a while, I think just for a minute, that perhaps I didn't need surgery...that I could have gone the AS route. But then I realize that I was indeed lucky to catch it at such an early stage and have such a good outcome with no lasting side effects of the surgery. Most men cannot mentally handle knowing that they have cancer and playing Russian roulette as to when it is the right time to have surgery or radiation. In my case, I couldn't wait to get it out! I counted the days until my surgery. Remember, that the biopsy only samples a tiny portion of the prostate and in my opinion, I would not want to bet my life on that small sample being representative of the whole organ. As you state, most cases of a change in Gleason score from biopsy to final pathology are an INCREASE. So for us super lucky guys who go from a 7 to a 6, we are indeed rare and fortunate. Don't feel cheated.....feel lucky my friend!

Bill K. from NJ
Posted 1/10/2014 3:06 AM (GMT 0)
Bill,

Your attitude is a refreshing one.

In some rare cases, the post-surgery pathology finds no cancer at all. This stage is listed as pT0. One article which dealt with this situation asked the following question: is the patient a winner or a loser? On the one hand, the man underwent, in retrospect, an unnecessary surgery. On the other hand, knowing there is no cancer in your body is a good thing.


Marvin
Posted 1/10/2014 3:45 AM (GMT 0)
Don't know about that line of thinking, Marvin. Wouldn't want to lose my bladder, or a lung, because some doctor or test thought I had bladder or lung cancer. As we know, one's sex life will never ever be 100% the same post prostate surgery, even if you aren't dealing with long term ED.

Guess it depends on how one looks at things.

David
Posted 1/10/2014 4:34 AM (GMT 0)
David,

I agree with you. In my situation, when my PSA went from 9.51 before the TURP surgery to 1.0 after the surgery, I decided that I would not undergo any treatment until it was absolutely clear that the cancer was still there. Both the prostate surgeon I first consulted and the urologist I sought for a second opinion were putting pressure on me to treat as soon as possible. My family were accusing me of "shopping around" for an opinion that would agree with what I wanted rather than listen to the "experts".

Marvin
Posted 1/10/2014 4:35 AM (GMT 0)
Marvin: In the case of not finding cancer after surgery must be agonizing. But if your initial biopsy was indeed checked and double checked by two (2) reputable institutions; then you may still say to yourself:

1. Was the pathology that complete that every FRACTION of every cc of prostate tissue was examined? And perhaps the cancer was not actually sampled at pathology time.( ie. it was missed?)
2. Did the person doing the pathology correctly grade the cells as cancer free?
3. Did the very mild cancer that was detected at biopsy time get attacked by the imune system during the time between biopsy and surgery and die off?
4. Or then the very worst case.....both labs at the time of biopsy thought they saw cancer when there was none.
5. It could be a combination of any of the above!

Makes you really wonder!!!

Bill K.
Posted 1/10/2014 4:46 AM (GMT 0)
Yes, an interesting philosophical debate that I've had inside my mind many times since. I feel guilty when I question my seemingly good fortune of being "effectively cured". I guess it can always be better as well as worse.

I do feel fortunate that the cancer was downgraded. I feel like there's less possibility of micro metastases with a 6 than 7 but remind myself that nothing is a guarantee. My wife is thrilled and thinks it's crazy I would've tried AS. Perhaps, I wouldn't have fared as well with AS as I think I would've? In any case, the toothpaste is out of the tube. If I get no better than right now, I'll be okay with it. Will hope and strive for better each day, though.

Still, I can't shake feeling like I was robbed of making a truly informed decision by being told my PCa was aggressive and had to be dealt with immediately. It was found to be benign and the best reason my Uro in Texas (had surgery in Minnesota) could give for the discrepancy is that some parts of the country view Gleason different than others??? Huh? So, the fine folks in TX thought 7 and the great Yankees thought 6? I find that hard to believe and think that Mayo in Minnesota was correct. I honestly contemplated a 2nd biopsy because I felt so tremendous prior to surgery. I committed to an all natural diet...one so unrecognizable from my former it would make your head spin. If I took out a sheet of paper 8 months ago and listed the 10 things I didn't ever want to eat ever again, that pretty much became my menu. I feel it rejuvenate my body. FORKS OVER KNIVES was a very interesting documentary that made me think my body was healing itself just as it made itself sick. I just needed to help it out instead of crippling it. Sadly, I'm off that strict diet but retain some principles of it. Been thinking of recommitting to it as it really gave peace of mind and my body reacted so well to it.

Wow, if I'd have come back as a ZERO on the Gleason... Whoa. I don't even want to think about that one. I think my head might explode if I ponder it too long.

Post Edited (Inchoation) : 1/9/2014 9:49:03 PM (GMT-7)

Posted 1/10/2014 4:56 AM (GMT 0)
Inchoation: For what it is worth, IMO.....you made the correct decision. And if you are "half mast" now at a mere 4 months, you are doing very well and should be "full sailing" soon. Your progress with ED is twice as good as mine!

Bill K.
Posted 1/10/2014 6:11 AM (GMT 0)
When the boom is small we can accomplish much. :)

Thank you, Bill... Will never know for sure but isn't that the "joy" of this whole thing?
Posted 1/11/2014 1:55 AM (GMT 0)
I can certainly understand why you feel gyped - I would too. Fortunately, it seems to be turning out OK, but I think you have every reason to feel frustrated and annoyed by your downgraded scores.

I agree with TurpT1a that it's probably a misread. It's not easy to determine a Gleason score, and takes a lot of training and expertise. Most pathologists are hired to read all kinds of cell types, and are not specialists at Gleason grading. The lack of concordance between pathologists at community centers and the experts like Epstein, Bostwick or Oppenheimer is troubling. Often it's not enough to make a difference in the treatment plan, but sometimes it is.

Grading accuracy is not so much an issue in post-RP pathology because of the greater amount of tissue sampled. PDA has explained that the way they slice it can make a difference, but generally the post-RP path is definitive.

Most of the time, the two match. about 1 of 4 times, there is an upgrade, and about 1 in 10 times, a downgrade. There was a change in the Gleason grading system in 2005. Some pathologists never got on board with the new standards. Here's a European study of pathologists showing how varied they are in their grading. In another European study among 337 pathologists only 71% agreed with the expert consensus on Gleason 6, and only 56% agreed on Gleason 7s.

Even the experts can disagree, but perhaps not so much that it would make a difference. I've known a couple of guys who had both Bostwick and Epstein read their slides. The only disagreements were in the relative percents, but not in the scores.

- Allen
Posted 1/11/2014 2:52 AM (GMT 0)
When Gleason developed the grading system it was based on 90% of pathologists agreeing with the grade. So there is already a 10% error rate built in with the best case senario.
Posted 1/11/2014 5:22 PM (GMT 0)
Image libraries reviewed by experts may be useful for standardization.
(www.ncbi.nlm.nih.gov/pubmed/23240715, last sentence)

With the huge strides made in computer facial recognition technology recently, I think a case can be made for eliminating subjectivity by using the technology. Imagine what a "Watson" could do not only for gleason scoring but for medical diagnosis as a whole.
Posted 1/11/2014 9:41 PM (GMT 0)
onthefence- what a great idea! Watson is being trained for medical uses anyway. In addition to Gleason scores, if it had the ability to read mpMRIs and CDUS, diagnostic tools that only a handful of radiologists are competent to use, it could bring those diagnostic tools to millions.
Posted 1/11/2014 10:09 PM (GMT 0)
I was originally diagnosed at Gleason 6 by a local lab. When I made an appt at MSKCC, they wanted to see the same slides, which they read at Gleason 7 (3+4). I was told the MSKCC reading was probably more accurate since they focus on PCa and the local lab does all sorts of evals.
However, it turned out the post-op reading was Gleason 6. But in had started breaking through the capsule, so I'm just as glad it's gone.
If I had side effects I might be more curious about whether I could have waited, but I'm not looking back now.
Mikey
Posted 1/12/2014 3:27 AM (GMT 0)
A related issue that needs to be addressed is that too often the treatment is applied without any suggestion of first getting a second opinion on the biopsy. In my case, it was a fellow PCa patient who was the one who suggested that I get a second opinion, and even mentioned Epstein at John Hopkins. Some institutions routinely require a second opinion (I understand that MSKCC does). However, this is not universally done. Most people who are diagnosed with cancer know little about it and rely on their doctors for all their information. They are not well-served if the surgeon or radiologist who should know better are so much in a rush to treat that they don't inform their patients of rather important information.

Marvin
Posted 1/12/2014 4:13 AM (GMT 0)
Marvin...I would add that my uro didn't invite a 2nd opinion... he was only interested in pushing me to one of his "guys" to be treated. I often wondered how much, if any, kickback was associated with trying to get me to have some procedure done by one of his "guys". I was being telemarketed like crazy after dx. I had his radiation guy calling, his surgical guy calling, etc.

The end of that is I chose to have surgery after getting a 2nd opinion and then hopping a plane and landing states away to have it performed. I almost had it done in NJ but chose MN. MD Anderson in Houston was a 3rd option and would've made the most sense since it was the closest but never had peace about that place.

My wellness seemed to be a backseat rider to pushing this through quickly and to someone connected to the person who diagnosed me. I find that insulting and tragic.
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