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Something I am struggling with...
Biopsy 2 years ago showed 1 core high grade pin. All other cores benign. PSA continued to rise slowly fro 2.2 to 4.3, so had another biopsy. Originally 3/12 cores Positive, G 6 10%, G6 20% G8. (3+5) 70%. Second opinion from Johns Hopkins said 3/12 G6, 10, 20, and 80%.
No PErineural, lymphovascular or SV invasion evident.
All positive cores were on the right side. Right lat apex, right mid and right base.
All doctors I have sen have told me I am in a potentially curable situation, and I should do well whichever treatment I choose.
What I can't get out of my mind, is how can a g6 grow to 80% of the core? And doesn't this put me at high risk of an upgrade or escape from capsule?
I spoke with Dr Epstein at Johns Hopkins regarding the downgrade from G8 to G6, and he was emphatic that if was G6, and also told me that th 80% volume in that core (which was right apex) didn't mean anything (his words). I did not press him to explain further, but thinking about it it's not logical to me.
I am trying to get my mind around this diagnosis, and get more positive, but this issue of 80% of core , and even 20% in the other core, is weighing on me, despite positive comments from all doctors, all well known, high profile Drs.
I believe that I can provide some clarification for you. It is FAR MORE LIKELY that the 80% involvement has to do with needle placement than an alarming growth of your G6 tumor, and that would explain why your high profile doctors are not concerned. I will give you an example from my own experience. In 2010, my biopsy results showed cancer in 2 of 12 cores that had 1 & 15% involvement. The following year, cancer was found in 4 of 12 cores and all four had 45% involvement (which was later downgraded to 20% by Bostwick Laboratories). This seemingly dramatic change from one year to the next was simply due to a more direct hit by the needle in 2011.
Two last things. It is comforting to know that Dr. Epstein is emphatic that you are a G6 in all of your cores, but if you want some added peace of mind, you can send your slides out for a third opinion to break the tie. That is what I did when I sent my slides out to Bostwick one year for a second opinion and the results came back showing perineural invasion. John Hopkins broke the tie in favor of not finding any evidence of that. (Whew!)
Also, I recommend in the future that you do not hesitate to ask your doctors any and all questions that you need answered, rather than hold back because you think that you might be pressing them. If you had, then it is likely that you could have avoided all this worry.
Thank you Alan. One of the Drs (the least high profile of them) actually gave me the same answer that you did. I do wonder, if that's the case, why do they bother to report it on the biopsy path report.
Btw I do generally ask the Drs tons of questions, I didn't press only because at the time with Dr Epstein, I didn't have the presence of. Mind to do so. I was surprised I was even able to get him on the phone.
The other thing I find curious, is that dr Epstein included a note to counter a note made by the original pathologist. The original path,, noted that the 3+5=8 was given a 5 due to comedo type necrosis , which is indicative of Gleason pattern 5. I actually read that to be the case on some internet info I foind. However, Dr Epsteins report had a note referring to the same slide that said "comedo type necrosis is not indicative of Gleason pattern 5 in a well formed gland"
So my point is, he was calling it a 6 based on the original path using what he called incorrect underlying assumptions, rather than subjectively evaluating the way the cells looked. He confirmed this to me on the phone call
I was not looking for a third opinion, because every surgeon/Uro I've seen including my original URO who did the biopsy and sent the samples to his own hospital pathologist who gave the G8 opinion, has said that Dr Epsteins opinion should be considered the correct one. However, since I am seeing a RO at MSKCC and they require the slides to be looked at by their own pathologists, I will likely get a third opinion. Which I pray will agree with that of Epstein.
Two and a half weeks past date of diagnosis, and I am still terrified of the possibilities. This is all so confusing
I agree with Alan. I had a core go from 30% to 80% on my second biopsy also. It's what's called sampling error. I asked my Doc if my cancer had progressed and he said no, it was simply sampling error.
Everyone should understand that when you quote your gleason score and needle biopsy volume you are always at risk of understating your disease simply because the needle biopsy may have missed a sample of a higher gleason or higher volume tumor.
Sometimes men get what is called a saturation biopsy that can be up to 100 cores when they have a rising PSA and they can not find the tumor with a standard 12-16 core biopsy.
Needle biopsies are not an exact science.
I believe your Doc's are giving you good advice and you will be fine with whatever treatment you choose.
As of now I am scheduled for surgery in early January with Dr Ash Tewari in NY. He requires a 3tesla MRI prior to surgery which I will have done mid December, that should tell us more. I am thinking I should set a second appointment with him after the MRI, to ask last minute questions as well as get info on what the MRI showed. As I said, I am planning to see an RO in the interim at MSKCC, but it's really more to complete the circle of due dilligence, as I am pretty set on surgery.
I need to throw this out there one more time.
Alan, I've had a number of people and seen a number of posts, on other forums say the same thing you are saying, that it's all about needle placement.
And yet I have seen a lot of "studies" (pubmed, AUA, etc) saying that high volume in a core is highly correlated to high volume in surgical path, high chance of GLeason upgrade, positive margins, EPE, and high chance of PSA failure.
So I am confused.
This one core of G6 @80%, the one that was downgraded from3+5 to 3+3, is the single thing that is most troubling to me, prior to surgery (or whatever primary treatment I dinally choose)
Sure, clinical stage is T1c and age is just turned 64.
I have had one Dr (surgeon) say he felt sligh firmness on one side, this was a week after biopsy another Dr (my Uro) say 3 x he felt nothing abnormal and a third dr (a surgeon) say if there was anything it was liked the result of after effects of the biopsy and temporary, so he said between t1c and t2a. Finally, a fourth dr , also a surgeon, about 3 weeks after biopsy, said Prostate felt perfectly normal. So I assume my stage is t1c. I did not see it noted on biopsy, don't see how it can be, as part of I itial staging would be whether or not a nodule is felt on DRE, correct?
First of all, you are only partially correct in your knowledge of clinical stage. This sentence from the American Cancer Society (ACS) website explains it well: “The clinical stage is your doctor's best estimate of the extent of your disease, based on the results of the physical exam (including DRE), lab tests, prostate biopsy, and any imaging tests you have had”. Also, just to make sure you fully understand, you can have a clinical stage T1c and still have a high Gleason cancer. That is because a T1c diagnosis involves two things: 1) Your doctor can't feel the tumor or see it with imaging such as transrectal ultrasound and 2) Cancer is found by needle biopsy that was done because of an increased PSA. If you are, in fact, a clinical stage T2a, the following two factors are involved: 1) Your doctor can feel the cancer with a DRE, or see it with imaging such as transrectal ultrasound, but it still appears to be confined to the prostate and 2) The cancer is in one half or less of only one side of your prostate.
Next, there is no reason for me to doubt what these studies that you refer to are saying about the possibilities associated with a high-volume core. That doesn't change what I said about the 80% involvement being far more likely the result of needle placement than what I called an alarming growth of your G6 tumor. I say this because Dr. Epstein confirmed in his second opinion that ALL 80% of the core is G6, and as you said yourself, you will have the chance to confirm that at MSKCC. Of course, that doesn't mean that you don't have a higher Gleason tumor elsewhere. That, according to a recent study, is much more likely than the morphing of your Gleason 6 into a tumor with a higher Gleason score.
As far as EPE, positive margins, and the possibility of recurrence are concerned, you should Google (or Bing) The Partin Tables provided by Johns Hopkins University. The results are based upon 5734 men who underwent RP at JH between 2000 and 2005. All you have to do is type in your clinical stage, PSA & Gleason score, and it will tell you, in percentage terms, the likelihood of your cancer being in one of these four pathologic stages: 1) organ confined 2) extraprostatic extension 3) seminal vesicle invasion 4) lymph node invasion.
Dr. Patrick Walsh at JH has this to say about RP and prostate wall penetration: "Men who are curable with RP have organ-confined cancer, or even cancer that has penetrated the prostate wall, IF the cancer is well to moderately well differentiated, and it’s possible for doctors to get what's called a clear surgical margin - that is, IF they can cut out all the tumor". Now, my own thoughts on this last paragraph are these: if I knew I had EPE, or a high likelihood of it, then I would not seek out surgery as an option. Those are two big "IFs" that he lists above. I would ask myself, how is the Dr. to know if the cells are well to moderately well differentiated unless he pulls core samples from the EPE, and I question the ability of MRI and CDU scans to accurately detect EPE so that a needle can be injected into it. I say this because, while it is said that both scans have that ability, my MRI not only did not find EPE, it didn't detect any cancer at all (and I definitely have cancer). Also, as far as the other "IF" is concerned, it seems to me that the Dr. would need to perform the surgery before he could tell if he is able to cut out all of the tumor.
So, if you are worried about the possibility of your cancer no longer being organ-confined, I suggest you look for alternative treatment. You are at the right age where radiation therapy is clearly an option, and I suggest that you talk to Don Oberlin, who knows pretty much all there is to know about proton therapy (a treatment option that I continue to read good things about). A second person, with another option, that you should talk to is Fred Wood, who chose neither surgery nor radiation, and instead opted for ADT3. I have talked to him briefly about this, and his experience is positive. I may be in your shoes down the road, Anon, and if I am, these are two guys I want to talk to. Both of them frequent the forum, and you can talk to them in greater detail by e-mail.
Alan, thank you for the detailed explanation,it's pretty clear. And from your explanation,at this point, I am clearly a stage t1c.
And using the Parton tables, my chance of organ confined disease would be 83.8%, with a 14% chance of EPE, and less than 1% chance of positive LN or SV
Even with a stage t2a, my chance of organ confined would be 73.8%. Interesting that they don't include core volume in the calculation, BTW, my PSA at biopsy was 4.3, and that was the reason for the biopsy, DRE was normal prior to biopsy
So bottom line, SO FAR, we don't have reason to believe with any assurance, that the tumor has escaped the capsule. And from what you say, the G6 is highly likely to be G6. Although there could be higher GLeason in there somewhere that was missed on biopsy.
I am scheduled for a Paranetric 3T MRI, MID DECEMBER, MY SURGEON, DR Tewari, wants it don prior to surgery, I assume so that when he goes in, it's with as much information about what to expect as possible.
So I guess I should know more at that point. If I understand correctly, it can show with some degree of reliability, whether there is EPE.
If it does, I suppose I need to rethink my plan. If not, then I would want to go ahead with surgery. If my thinking is flawed feel free to let me know.. I have reasons for wanting the surgery if it offers potential to be curative, admittedly partly psychological (the way I am wired) but also because I'd like to know from surgical biopsy exactly what I am dealing with.
Pending results of the MRI, it seems like I am in decent position, based on what I know, with an understanding that something could change with the MRI or even with surgical pathology.
Your welcome Anon. Glad to help. Reading your last post, we do seem to be in sync now, except on the subject of EPE detection. I said:
“I question the ability of MRI and CDU scans to accurately detect EPE so that a needle can be injected into it. I say this because, while it is said that both scans have that ability, my MRI not only did not find EPE, it didn't detect any cancer at all (and I definitely have cancer)”.
…and you said:
“If I understand correctly, it (meaning the MRI) can show with some degree of reliability, whether there is EPE”.
So, when you talk to Dr. Tewari about an MRI’s ability to detect EPE, I would appreciate you letting me know what he says on the subject.
To answer your question, on 8/30/12 at MGH, I had a 3.0 Tesla MRI with and without contrast that involved the use of an endorectal coil. Whether or not that means that it was “parametric”, I do not know. I could not find any web information that could answer that question, and the hospital was not able to answer it for me either. If you have that knowledge from your research, then I would appreciate you letting me know.
The findings listed on the report are as follows: “Prostate: Normal. No prostate neoplasm identified. There is no evidence of EPE. The neurovascular bundles are intact. The seminal vesicles are unremarkable. No pelvic lymphadenopathy”.
Here is what I had to say about it in my Survivor Story: “The MRI detected NO cancer at all, and I have a rather large visible tumor that can be seen on the CDU. I was disappointed and felt that it was a waste of my time. From my research, it was my understanding that these MRI images tend to miss insignificant tumors and pick up those that are possibly aggressive. On the positive side, one could argue that my large tumor was not picked up because it is not aggressive; hopefully, that is true, but for the MRI to have any value I believe it still should have detected it”.
In your case you seem mainly concerned about curing the cancer and not the side effects. So you are going to get your prostate out and then if salvage radiation is required you will get that later. That is the best you can do. No one dies (I've heard of one unusual case) for at least 10 years after getting their prostate out from prostate cancer. Partly because they don't operate if you already have metastatic bone disease.
Once you have the prostate out and receive the pathologist report you will have more information but even then it won't make any difference to your next decision on whether you need salvage radiation treatment. That will be decided on your PSA after the operation. If your PSA goes over 0.2 then you get salvage radiation.
@Frank - It's not that I am not concerned about the SEs, I clearly am. More the Incontinence issue, then ED. I could make adjustments and live with the latter if I had to, if that was the price of cure. The incontinence if it were permanent, would be more difficult. But I have a high degree of confidence that worst case scenario, that gets worked out over time.
So that's why I am meeting with an RO next week. I am still very partial to surgery, but I want to hear what the RO has to say.
@Alan - parametric is the term I think that is used for these MRIs so I think its the same thing. I am also having the endocoil, w and w/o contrast.
I will let you know if I get feedback on accuracy from my Dr. If the results are good, I will have the presence of mind to ask. If the results show anything bad, I may not :-(
Anon, I know about six other chaps who used the same highly recommended surgeon as myself for the radical....and none have any incontinence issues. None of us even do kegels. The top surgeons seem to be pretty adept at protecting against incontinence. We all had issues of some sort with erections and needing viagara which helped somewhat...but you 'never' get fully back to where you were in this area. Kind of a small price to pay at our stage of life to pretty well ensure staying alive.