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Wow... Got the biopsy results today

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Posted 2/14/2019 5:20 AM (GMT 0)
I have only three words - coming from a 49 year old who went through surgery:

Wait, Watch, Wander

You have lots of time on your side
Posted 2/14/2019 5:38 AM (GMT 0)
You have been given some very good advice here. I am old and my case does not compare to yours. I jumped into surgery with only 2 of 12 samples. 20 % g-7. Did not know about this group at the time. Nothing has been the same. No ejaculation, total ED. Was told I may need viagra. results from RARP, Blown out hernia. Blown out Hemrroids. incontinence 20 months later. Got an implant for the erections but that is just not the same and terribly expensive and painfull. The little things they don't mention.
Posted 2/14/2019 9:45 AM (GMT 0)
Leah, just Google “active surveillance younger men” to find some several articles and studies showing that AS is a safe choice for younger men.

Here is one article:

https://prostatecancerinfolink.net/2016/07/07/can-a-man-be-too-young-for-active-surveillance/
Posted 2/14/2019 10:26 AM (GMT 0)
https://www.verywellhealth.com/is-gleason-6-prostate-cancer-really-cancer-4118536
Posted 2/14/2019 1:19 PM (GMT 0)
Leah,
Read Michaels post. Over and over again. It’s gold,
Posted 2/14/2019 2:01 PM (GMT 0)

Michael_T said...

Deciding how to treat any disease is a personal matter. Everyone has their own calculus and at the end of the day, it's your opinion that matters most.

Correct, but in this case it's Leah's husbands opinion that may rule to day. Lots of wonderfully informed advise here, Leah.

Can you get you husband to read it? AS just seems to make so much sense for him, as long as he can live with a bit of anxiety. Surgery vs Radiation is a choice that he can safely put off for a long time, maybe forever. But once he has the PCa diagnosis, continued vigilance is a fact of life, whatever treatment you and he select.

Good luck.

Post Edited (garyi) : 2/14/2019 7:05:33 AM (GMT-7)

Posted 2/14/2019 2:07 PM (GMT 0)
In my case, I decided to be treated mainly because of the MRI findings. The pathological report was in agreement to what the images indicated and I was upgraded from G3+3 to G5+3. But everybody is different.
Posted 2/14/2019 2:20 PM (GMT 0)
Disclaimer, Disclaimer, Disclaimer: I am a group of one. I have an extreme bias against surgery. I am not a doctor. I state the opinion of one, mine. Do not believe most of the stuff you hear on the big net. As an example:
1. One poster said that at the Epstein Lab “all they do is read prostate cancer slides”. This is so totally incorrect. Nothing could be less true.
• Usually I downplay the recommendation of a second read on slides. Most academic centers have a person that is an expert in (name a tissue). However, perhaps a validation of the original interpretation might add some stability to his emotional “just get it out” orientation
• I believe that it should be considered malpractice for a surgeon to remove a prostate in a person of this age with this pathology.
• I also believe that it would be a crime against oneself to have surgery at age 44 with this pathology when it is so obvious to people that have had surgery (me) that this would be a monumental mistake.
• On the subject of MRI “sizable mass”. This happens with x-ray, ultrasound, MRI, CT with regularity. The study indicates something and after additional studies / procedures it is just not as it appeared. On the other hand it is true (but unlikely with 15 specimens taken under a controlled environment) that this area wasn’t included in the samples submitted.
• Just to be clear. I have had one of the best possible outcomes from surgery ever, but I would never, ever, ever do it again, I never recommend it to anyone that ask my opinion. I make it known immediately that I have a perverse bias against surgery.
Don’t believe anything in my post as it is just my rather prejudiced opinion.
GOOD LUCK!
Hero
Posted 2/14/2019 2:37 PM (GMT 0)
Leah, you have gotten some excellent advice on this thread and I hope you can get your husband to read these posts. You two should slow it down, get educated on our disease and get the second opinion from Dr. Epstein. There is a sticky thread at the top of our forum that is designed for new patients to read -- please take the time to do so. Seeing Dr. Scholz will, I predict, be enlightening to your husband. You might have him read Dr. Scholz' two excellent books, "Invasion of the Prostate Snatchers" and "The Key to Prostate Cancer". Those will be great prep for his appointment.

Finally at this point I'll just reemphasize what others have said: Having surgery with his diagnosis is like putting in a thumb tack with a sledge hammer -- there is bound to be ancillary damage. You two are making potentially life changing decisions now so try to be sure you are as right as you can be.

Let us know how the appointment goes.

Jim
Posted 2/14/2019 3:18 PM (GMT 0)

Leah77 said...
2 different urologists told him he was fine ( he may be) But I pushed for an MRI- It came back with a suspicious mass... Biopsy is tomorrow. The mass is in an area of the prostate that is not typically reached by biopsy or felt by DRE. So having the MRI is crucial for proper diagnostics in my husbands case.

After that scary MRI report, he ends up only having 1 out of 15 cores showing less than 15% of gleason 6 !? Does anyone know how accurate these biopsies are?


I've been laying low in this forum for a while. But I must jump in and point out that most of the replies so far assume that the patient actually has only a small volume of G6. That is not necessarily the case. MRI's can be misleading, and biopsies can miss tumors entirely. While AS may be appropriate in this case, I propose that the true nature of this case is at this point not certain.

In my case, the biopsy missed the primary tumor, located at the base where it "not typically reached by biopsy or DRE". My urologist ignored my steadily rising PSA as well as my family history. The MRI indicated that the tumor was contained within the prostate. All of that was wrong. It meant absolutely nothing to the doctors involved. But it made a world of difference to me.

Again, while AS may be appropriate, please allow me to present an alternative possibility. That is that the MRI was close. The biopsy was wa-a-ay off base. The tumors are much more pervasive and of higher grade than this initial stab have indicated. Waiting a year or so will allow it to grow rapidly. It happens. It happened to me.

Just another point to consider. I realize the severity of overtreatment at this early stage.
Posted 2/14/2019 3:53 PM (GMT 0)
Leah, your husband's extremely favorable biopsy result--no clinically significant prostate cancer found--strongly supports a plan of no immediate aggressive actions, and gives you the gift of time.

I noticed you did not yet, however, address the apparent misalignment of your two key pieces of data:

  • "1.2cm lesion that is a Pirads 5/5" — indicating very high likelihood of clinically significant PC
  • "1 out of 15 cores showing less than 15% of gleason 6" — which is not clinically significant


I did not see here whether you indicated that the biopsy was "MRI targeted" or the more standard ultrasonically guided but "random/blind" type. Additionally, what sector of the prostate was the biopsy sample from? What sector was the MRI lesion observed? Please be sure that you understand.

Your husband is clearly not at a stage to be talking about any type aggressive treatment; that would be incredibly premature. (Prostate Cancer rule-of-thumb: nobody should have an aggressive treatment based on a single prostate biopsy with low-risk findings.) I'm pleased to hear that you plan to meet with Dr Scholz to discuss these important points...

Post Edited (Blackjack) : 2/14/2019 9:10:23 AM (GMT-7)

Posted 2/14/2019 4:03 PM (GMT 0)
I would add that I too was a low volume Gleason 6 when diagnosed. I had the surgery and post op pathology revealed I had a much more serious case then the biopsy suggested. It's a difficult decision and I echo everyone else that you should take a few months to research and seek additional opinions. However, if you do go AS than you must have that confirmation biopsy to see again if there is something more serious in there.
Posted 2/14/2019 4:19 PM (GMT 0)
Some clarification.

Johnathon Epstein and his group are reknowned for their prostate expertise, but they also do general surgical pathology. Less than a year ago he told me they do about 10,000 PCa pathologies from biopsies and surgeries each year. Another top firm is Bostwick. I do suggest a second opinion be sought from one of these. Bostwick was my first read, so we didn’t get a second opinion.

With the initial diagnosis that has been explained here, any rush to treatment would, in my opinion, be malpractice. It may be that treatment at some point is to be considered, but not at the present. AS is the best from my layman’s point of view, because it presents the best way to monitor the situation without physical treatment side effects. Granted, there are psychological side effects that need to be addressed, but there are many ways to start. The first order of business is education. If he only has G6, which is the current indication, then AS is the best way for now. Many top specialists are referring to G6 as pseudo cancer since it does not spread and cause other damage, nor is it known to further mutate into more aggressive cancer.

Above all, help him relax and learn. He is in no danger and cutting out what he has currently is like cutting off his thumb to treat a hangnail.

Best wishes to both of you and Happy Valentines Day. Enjoy it, please.
Posted 2/14/2019 4:31 PM (GMT 0)
RobLee -- I remember after my "big" consultation with my uro where he layed out my situation and possible treatment plan he told me "take your time and make a decision" I asked him what that meant. he said, "two weeks, not two months". granted I had 12 of 12 cores positive and at least one at 70%. the patient in this case probably does have more time, but we don't know that yet.

JNF, Hero -- I would agree with malpractice at this point and another case of the 90% making the 10% look bad.
Posted 2/14/2019 5:12 PM (GMT 0)
Leah,

Welcome to the forum. I've been following your case. I've also kept quite until now. Here my opinion.....

There are a lot of smart people on this forum. They provide us all a great deal of important and useful information. However, there is a big difference between having lived it and having learned or read about. You're now beginning to hear from those of us who have lived it.

I understand exactly where your husband is.

Leah, I've yet to read anyone on this forum whose surgery and complications went sideways more so than mine did. But, that's medicine. My take on this stuff is just the opposite of what the first page and a half hammered home. My take is.....your husband should trust his instincts. Many times, first instincts are the correct instincts.

The more people that read your thread Leah, the more incidences there will be of people coming forward. I've kept my mouth shut as too. The reason? Anyone who has reservations on this board about AS tend to be silent because we do not want the fights that come with having an alternative viewpoint. It's not worth it to us. What you're beginning to see is that AS bites men.

There's something else you will see that's unfortunate. The one's who have already given their opinion, will now circle the wagons and come back around to tell us that how wrong we are. Even though they did no live it. They never had the opportunity to make the choice between AS or surgery.

Good luck to husband Leah. I understand his wanting to know what in inside of his body. As have some who've already spoken. But they leave that part out. They give you the "forum acceptable" answer, even though they had the choice between AS and did exactly what a lot of did, we did what your husband wants done. My guess is, they do not regret their decision Leah. They just don't want to tear your thread to shreds. But when the silents stay silent, you do not get the full picture of this forum.

Again, good luck to your husband. (You'll be hearing ALOT more from the most vocal pro AS. You won't be hearing from me again. But I will be following your husband's journey)
Posted 2/14/2019 5:20 PM (GMT 0)

Blackjack said...
Leah, your husband's extremely favorable biopsy result--no clinically significant prostate cancer found--strongly supports a plan of no immediate aggressive actions, and gives you the gift of time.

I noticed you did not yet, however, address the apparent misalignment of your two key pieces of data:


  • "1.2cm lesion that is a Pirads 5/5" — indicating very high likelihood of clinically significant PC
  • "1 out of 15 cores showing less than 15% of gleason 6" — which is not clinically significant


I did not see here whether you indicated that the biopsy was "MRI targeted" or the more standard ultrasonically guided but "random/blind" type. Additionally, what sector of the prostate was the biopsy sample from? What sector was the MRI lesion observed? Please be sure that you understand.


Blackjack,
He had the Uronav MRI- fusion biopsy. There were 12 random samples taken and 3 targeted. Only ONE of the THREE targeted samples came back posotive for 3+3 at 15% .

Posted 2/14/2019 6:17 PM (GMT 0)
From past experience I have noticed the overarching message for these threads is usually:
1) you have time to make an informed decision.
2) have your biopsy slides confirmed.
3) talk to specialists in treatment areas that may apply to your situation.
4) take the time to educate yourself so you can make the best possible decision for yourself.

I think this is appropriate and the best we can do.

Then the OP either chooses to do some, or all of these things, or they don’t.

I usually only post my views once on these types of threads. Any more than that seems to be wasted effort.
Posted 2/14/2019 6:41 PM (GMT 0)
Thanks, Leah. So “misalignment” persists.

The MRI will, as you probably know, overlook the presence of 3+3 sites as not clinically significant. So the high Pirads reading should, in theory, have absolutely nothing to do with the 3+3 biopsy findings. Do you see this key point? I’d be really surprised to hear that the urologist you’ve already seen didn’t seem to address this...but you haven’t mentioned this particular point. At this point, I’m looking forward to hearing what Dr Scholz says about this conundrum...the 2 bullet points in my prior post.
Posted 2/14/2019 7:19 PM (GMT 0)
Yes, the "misalignment" is disturbing. Which is the point I was trying to make. The MRI detected something significant in there, even serious... something which the biopsy seems to have missed entirely.

Some may say "a negative biopsy is a good thing". I completely disagree. After all, mine started as a "your biopsy is negative" story. I'm with Island Time. A lot of guys here were just plain lucky that their cancer was easily detectable on the first stab, or a subsequent stab. And turned out to be relatively low grade.

I would NOT trust that biopsy at all. It was just shooting in the dark.
Posted 2/14/2019 7:40 PM (GMT 0)

RobLee said...
Yes, the "misalignment" is disturbing. Which is the point I was trying to make. The MRI detected something significant in there, even serious... something which the biopsy seems to have missed entirely.

Some may say "a negative biopsy is a good thing". I completely disagree. After all, mine started as a "your biopsy is negative" story. I'm with Island Time. A lot of guys here were just plain lucky that their cancer was easily detectable on the first stab, or a subsequent stab. And turned out to be relatively low grade.

I would NOT trust that biopsy at all. It was just shooting in the dark.

That is our thinking.... but at the same time the urologist mentioned that this is a transitional zone tumor... they tend to be less reliable to diagnose via MRI- and that the overall 4/5 score still has a big margin for error.

We are going to think positive and assume that it is probably a low grade cancer... but we are going to be very assertive and proactive. No way is AS even a consideration unless it is absolutely certain a small G6 .
Posted 2/14/2019 7:44 PM (GMT 0)
RobLee, I would respectfully challenge two of your points...and I offer this because it seems like your post was a follow-up to mine:

RobLee said...
The MRI detected something significant in there, even serious...


There is no evidence of anything "serious." MRI does not in any way gauge "seriousness." It ONLY gauges the likely presence or absence of something "clinically significant," in other words, something greater than 3+3. ONLY a biopsy Gleason score grades-out the "seriousness" or aggressiveness of the samples. This is a common mistake that people think a high Pirads score means high-grade cancer...that's absolutely false...no reason for Leah to think that.

RobLee said...
I would NOT trust that biopsy at all. It was just shooting in the dark.

Perhaps this point is more minor, but "shooting in the dark" is what happens in a TRUS, or an ultrasonically guided "blind" or "random" biopsy. Maybe you missed it, but Leach's husband had a MRI-guided biopsy to target specific likely spots. Perhaps the important point you meant to make was that the biopsy is still--even if MRI-guided--just a "sampling" and not 100%.

Besides these couple of finer points, I think RobLee and I are conveying a common sentiment...something less than very high confidence in conclusion drawn from the first biopsy...which is why I'm very interested to hear what Dr Scholz recommends as next steps.
Posted 2/14/2019 7:48 PM (GMT 0)
Leah, you posted as I was typing my prior entry.

Keep in mind that one is not really "on AS" until after the 2nd, confirmatory biopsy validates the initial choice. Now, and in the mean time, he is a good "candidate" for Active Surveillance. There is no medical evidence to base any decision on for anything else. Beware of letting him (or you) form an emotion-based decision path which is counter to the medical evidence...that's a common mistake.

Post Edited (Blackjack) : 2/14/2019 1:02:10 PM (GMT-7)

Posted 2/14/2019 9:01 PM (GMT 0)
Leah:

The doctors at POS are some of the best. However, if your husband insists on some kind of treatment, consult with Dr. Chris King in Radiation Oncology at UCLA and/or Dr. Howard Sandler in Radiation Oncology at Cedars Sinai. Both are very highly recommended for RT.
Posted 2/14/2019 9:01 PM (GMT 0)
Thanks Blackjack. I know nothing of PIRADS... Didn't even know my own. But your explanation of it being a measure of certainly rather than severity sounds valid. And yes, I did read that three cores were targeted. But they could well have been tangential to the tumor and missed its core.

I see this as would an auto mechanic. Some places are relatively easy to access and others are highly inaccessible. Even a minor problem that you can't reach can become a major issue.
Posted 2/15/2019 8:08 PM (GMT 0)

2019Guy said...
That sounds like pretty good news to me, Leah, and somewhat similar to my situation. I'm also considering a consult at the Scholz practice and will be interested to read of your experience there.

Will let you know!
I am curious... When you did the targeted biopsy, how many samples did they take of the target, the 15mm lesion? And how many of those were positive?

I am starting to wonder if my husbands biopsy missed the target. I asked the dr and he said that happens about 15-20% of the time . They did 3 cores of the target, only one was positive.
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