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Posted 10/21/2019 7:50 AM (GMT -7)
Hi there....new member here. My husband (age 51) was diagnosed last Wednesday. This started with a routine PSA test that came back at 4.5. His doctor recommended a biopsy. His Gleason score is 6 with 4 out of 12 samples positive. His urologist is sending it off for genotyping and he will have a MRI in December. We don’t see the doctor again until the day before Thanksgiving. One sample indicated perineural invasion. I have no idea of the significance of that. I’ve read conflicting things on that.

The doctor did mention doing another biopsy with MRI and taking 36 samples instead of 12 but didn’t say when he might want to do that.

My biggest fear is it spreading outside of the prostate. I don’t think I will breathe easy or sleep well until we have confirmation that the G6 score is accurate and that it hasn’t spread. If that is confirmed, our plan is to take a watchful waiting or active surveillance approach. My husband said he knows it will likely have to be removed at some point, but later rather than sooner would be preferable. We have been researching like crazy since receiving this news.

I do have a few questions about his biopsy pathology report though. Below is a post I made earlier in a FB support group page so I’m just copying and pasting.

Hubby and I were reviewing his pathology report from his TRUS biopsy and we noticed what we think are a few errors. I’m assuming they just edit a report plugging in new numbers and what not. It’s not huge but it’s sloppy and annoying.

For example, there were 12 samples taken. It clearly lists them out for identification. Yet in the summary it says percent of cores positive 28.6% (4 out of 14). No, it’s 4 out of 12 which means 33%.

Then further down under diagnostic information it says RIGHT APEX - adenocarcinoma of prostate. Gleason score 3+3=6. Tumor present in 1 of 2 cores, occupying 40%, 0% of the involved cores. Involvement 20%. There weren’t 2 cores from that section. There was only 1. I can match them up with the diagram. So it’s 40% involvement right, not 20%?

Also, maybe someone can explain this. Back up top in the summary section, it says maximum % of tumor in positive cores 60%. Where do they get that number from.
The 4 positive cores are as follows.
Left base 4%
Right apex - 20% (or is it 40%?)
Right lateral mid - 5%
Left lateral apex - 40%.

I’m tempted to call the pathology lab and ask them to review and clean this up just on the principal of the matter. These reports are important and should be accurate!

Can anyone tell me if I’m just reading this wrong?
Also, thank you for letting me join your group that nobody wants to need. 😢
Posted 10/21/2019 9:32 AM (GMT -7)
Star, sorry you had to find us, but glad you found us. I’ll clarify what I can but leve. Lot to others who ER better at it than I am.
There is a lot of debate about peroneal invasion and whether or not it’s a risk factor when found on biopsy. It is very common in surgical pathology, on biopsy less so I believe. Unfortunately like a lot of things related to prostate cancer there is no clear answer

I think 36 samples even an MRI guided biopsy sounds like a lot, I asked the doctor what the reason is for that, I’m sure he has a good answer. But usually I think when you see that many samples taken it’s after two or three negative biopsy’s with a strong suspicion that there was something that was missed

I think 36 samples even an MRI guided biopsy sounds like a lot, I asked the doctor what the reason is for that, I’m sure he has a good answer. But usually I think when you see that many samples taken it’s after two or three negative biopsies with a strong suspicion that there was something that was missed

Gleason six is a real slow mover, and if in fact It is a G6 which you can’t know for sure right now, then the chances of it escaping the prostate are the not high although there is a chance

Reading prostate cancer biopsy tissue is a very subjective process. I would strongly recommend that you ask your doctor to send the slides off to Dr Jonathan EPSTEIN at Johns Hopkins Pathology for a second opinion.
This is done all the time, they have a second opinion service and Epstein does nothing but look at prostate slides, his recognized world leader in prostate pathology. The cost is about $250 probably not covered by insurance but well worth it

I too am confused by some of the language regarding the percentage of Cores and percentage of tumor in each core, so I will leave that to others who will surely be along soon,
This is a great form with lots of knowledge, and you also get plenty of support here. Hope you stick around. Most important please know that based on what was found in the biopsy you’ve got plenty of time to make decisions, and Active Surviellance is likely a very good option. Sometimes that puts treatment off for a year or two but we’ve got men here who have been on active surveillance for 10 years or more with no reason to treat
I am not a doctor, just another guy without a prostate
Dx Age 64 Nov 2014, PSA 4.3
BX 3 of 12 cores positive original pathology G6
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology G7 (3+4), - ECE, - Margins, -LN, -SV (+ frozen section apex converted to negative)
PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat Feb 2017, still .02. May 2017-.033, August 2017- .033 November .046, March 2018 .060. June 2018 .068, July 2018 - .082, August 2018, .078, August 2018 - .08 Start ADT. Sept 2018 Start SRT
Sept 2018 thru November 2018 – T = 4, PSA = <.05
Decipher test, low risk, .37 score
My story.... tinyurl.com/qgyu3xq
Posted 10/21/2019 10:19 AM (GMT -7)
You are doing well considering that you just started this journey with your husband.

The math and notation errors in the pathology report are not all that significant (I had a 2 of 2 and no 1 of 2 but I understood the sampling). You should query the urologist or pathologist about them anyways. Having them sent to Johns' Hopkins - Dr Epstein for a second opinion is a good idea as Prato suggested to get Gleason 6 verified.

Active surveillance may be a stretch with 4 positive cores although the PSA, Gleason 6, and low percentage involvement would lean in that direction. In any case, you have time to study this quite a bit and have more testing done which is a good thing.

Sound like the urologist is doing the right thing by pursuing a MRI and considering additional biopsy cores before making the call on surveillance or treatment. AS requires confirmation biopsy testing anyways so that is just part of the process. When to do that and how many is probably debatable and a MRI may help a little with that. I had the standard 12 cores plus a few more MRI targeted cores which in my case did not change the outcome, just more verification of the problem. It is easy for 12 cores to miss lesions and under-report the Gleason scores so you want to be pretty sure of the results before making long range decisions.

The perineural invasion part does not seem to be all that important in the scheme of things from what I have read as the other stuff is much more important. The genomic testing can be helpful as well.
7/2018-66yo, PSA 4.1->5.1
8/2018-MRI, PI-RADS 5
8/2018-MRI Biopsy,4+3
9/2018-CT/Bone clear
11/6/18-RALP@St. Johns
11/2018-Post-Op Path G7(4+3)5% Tert Gr 5, pT3a pN0 Gr 3
Pos.Marg (SM+), EPE, <3mm, L=0.1mm?
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Gr5
“Difficult to distinguish EPE vs intraprostatic incision,3mm” Extent:pT2x
2/2019-PSA<0.1
4-6/2019 ART
5/2019-PSA<0.1
8/2019-PSA<0.1
Posted 10/21/2019 10:46 AM (GMT -7)
Welcome to HW, sorry you need to be here.

Gleason 6 and that report puts you in the lower risk group. At a PSA of 4.5, it's unlikely that it's spread beyond the prostate. You should have the biopsy slides sent to Johns Hopkins (as Prat suggested) for a second read.

G6 PC is a slow grower so you have time to make an informed decision on what to do. Do your research and get a second opinion. Check out the sticky threads at the top of this forum for more information. You shouldn't be rushing into anything at this point. Don't ignore it, but don't run. Walk and take it bit by bit.

At this point, I'd think all your options are open, AS (active surveillance), surgery and radiation (including Brachy seeds and SBRT). Before committing to a treatment plan you should consult with a surgeon and a radiation oncologist (RO).

I do question the need for another biopsy at this time - just don't understand that.

Keep us updated on your progress.

Ask all the questions you want - we're here most days.
Andrew
I'll be in the shop.
Age 59, 52 at DX
PSA:
4.2 10/11, 1.9 6/12, 1.2 12/12, 1.0 5/13, .6 11/13,
.7 5/14, .5 10/14, .5 4/15, .3 10/15, .3 4/16, .4 10/16, .4 5/17, .3 10/17 .3 4/18, .4 11/18
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
Posted 10/21/2019 12:27 PM (GMT -7)
Right now the slides have been sent off for the genomic testing. I don’t know if he sent them to Onco DX or to Prolaris. I was thinking that depending on what those results show, we’d ask to have them sent to JH or wait for the next biopsy which would be more samples and have those sent.

If my memory is correct, urologist said because cancer was found in all 4 quadrants, another biopsy guided by MRI (overlaid with mri images?) would give us a better picture and make sure the initial diagnosis is accurate. By the time this happens, it will be 3-4+ months since initial TRUS biopsy.

The waiting on more info is the hard part. He’s not even having MRI until December. That’s a long time to sit, wait, and worry. Hubby is just really hoping the G6 is accurate and he can do AS.

We are reading everything and learning. Right now that’s all we can do. Sigh.
Posted 10/21/2019 3:41 PM (GMT -7)
Star - You can hope for the MRI to show something to target or you can hope that it does not show anything which is pretty typical.

The usual practice is to wait a couple of months after a biopsy for everything to heal up before doing anything including PSA, biopsy, and surgery. Your URO is just following standard practice with a MRI in December so you get best results not influenced by the biopsy.

Unless the MRI shows something of reasonable concern (PIRADS 3 or higher?), waiting would be a good idea for the next biopsy. Be patient and wait for things to happen. Easier said than done I know but be glad that this is not a slam dunk like many of us have gone through and treatment is required as soon as the decisions can be made. You can order Dr. Walsh’s book and have completely read it by the time his MRI rolls around.
7/2018-66yo, PSA 4.1->5.1
8/2018-MRI, PI-RADS 5
8/2018-MRI Biopsy,4+3
9/2018-CT/Bone clear
11/6/18-RALP@St. Johns
11/2018-Post-Op Path G7(4+3)5% Tert Gr 5, pT3a pN0 Gr 3
Pos.Marg (SM+), EPE, <3mm, L=0.1mm?
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Gr5
“Difficult to distinguish EPE vs intraprostatic incision,3mm” Extent:pT2x
2/2019-PSA<0.1
4-6/2019 ART
5/2019-PSA<0.1
8/2019-PSA<0.1
Posted 10/21/2019 7:07 PM (GMT -7)

star0210 said...
Right now the slides have been sent off for the genomic testing....... I was thinking that depending on what those results show, we’d ask to have them sent to JH or wait for the next biopsy which would be more samples and have those sent.

I would respectfully disagree. You are in the learning stage. The best learning comes from a second opinion from Dr Epstein. I'd want that sooner rather than later. And yes you guys are lucky to be a G6. Best of luck as you both go through this together.
Dx 5/18/17
11/12 cores 2 4+4
RALP 7/27/17;3 pos nodes
psa post op 0.15 to 0.28
scan=multiple bone mets
Clev Clinic ups to G9
CClinic MO+my MO say ADT+Zytiga+Pred
lupron 11/17/17
zytiga 12/15
psa 12/28 0.03
4/4/18=<0.01
7/3=<0.01
stop Zytiga 7/16 bad liver #'s
9/11/18 restart Zytiga 1/2 dose
10/5=<0.01
10/30 start 3/4 dose
1/19=<0.01
4/19=<0.01
7/19=<0.01
10/19=<0.01
Posted 10/21/2019 8:09 PM (GMT -7)

GoBucks said...


I would respectfully disagree. You are in the learning stage. The best learning comes from a second opinion from Dr Epstein. I'd want that sooner rather than later. And yes you guys are lucky to be a G6. Best of luck as you both go through this together.

My point is we can’t have them sent now because they’re already sent elsewhere for the genomic testing. I’m guessing once they’re back from that, then we can send them to JH? How long are the specimens good for?
Do you know if the genomic testing also verifies Gleason score?
Posted 10/21/2019 8:14 PM (GMT -7)
I thought of another question. I know there is no set criteria for following an AS approach, but does location of positive samples play a factor?
He’s positive in 4 of 12..one in each quadrant.
What does mean vs if the positive samples had been clustered in say only one area or on one side? Or does it mean anything at all?
I think what I’m learning from all this reading is that I need to quit reading! Lol

Thank you very much to all of you who have responded. It’s very comforting to have people to communicate with.
Posted 10/22/2019 2:54 AM (GMT -7)
Star, welcome. You're asking the right questions.

Please try to relax. I biopsied at G6 (3/12 positive, all on one side), and my diagnosing Uro told me I had 6 months to make my decision(s). The thing about AS is that there are variations in the protocols. Some are somewhat stricter than others. So, the PNI and the apical tumor can disqualify from some programs, but not others, same with the other location questions.

Your key points of action are to get the genomic testing done, get the 2nd opinion on the biopsy slides done, and then start talking to the medical experts. Just remember that Urologists are surgeons, so they know surgery, they recommend surgery, and they will frequently bad mouth options that aren't about having immediate surgery.

I didn't see where you mentioned where you are located--so where are you, and where are you going for your diagnostic work?
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA Non-Detect since April, 2015
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
Posted 10/22/2019 3:19 AM (GMT -7)
Hi halbert,

We are in South Louisiana just north of New Orleans.
We are seeing Dr. Sleeper.
https://www.sttammanyurology.com/

I don’t know yet who we will see for a second opinion and haven’t gotten to the stage of finding a RO to consult with should that become necessary. (How does one go about finding a great doctor?)

Dr. Sleeper did not at all push surgery. He did definitely stress that there’s no rush to make any sort of decision and said he is completely on board with waiting and watching. In fact, he initially wasn’t even going to do MRI until sometime next year but hubby said well, I’ve already met my deductible for this year...I just as soon take advantage of that and get whatever additional testing done before the end of the year.
The only thing he does not recommend is radiation at this stage. He said it’s the gift that keeps on giving and not in a good way. He’s entitled to that opinion and we would still consult with a RO should treatment become necessary.
Posted 10/22/2019 5:44 AM (GMT -7)
Star, we have a number of members in your area, and they may kick in recommendations for the area. A good place to start is a major academic medical center--Tulane comes to mind. If he was in a higher risk category, I would strongly suggest MD Anderson in Houston--but you're not there yet. Your Urologist sounds like he is up to speed on the current recommendations.

I fully understand doing the MRI now because of deductibles--it makes sense.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA Non-Detect since April, 2015
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
Posted 10/22/2019 6:23 AM (GMT -7)

star0210 said...
I thought of another question. I know there is no set criteria for following an AS approach, but does location of positive samples play a factor?
He’s positive in 4 of 12..one in each quadrant.
What does mean vs if the positive samples had been clustered in say only one area or on one side? Or does it mean anything at all?
I think what I’m learning from all this reading is that I need to quit reading! Lol

Thank you very much to all of you who have responded. It’s very comforting to have people to communicate with.

Star, the main thing is: what you know for sure right now, or so far. And based on the info at hand so far. you know that he is very low risk. If indeed he is all G6 - and that is something we never know whether we have biopsies or not- then he is very low risk. And the chance of ever dying from PC - with or without treatment- is very low indeed. The majority of older men who die of heart attacks or car wrecks or whatever have PC and never even knew it, especially these low risk types of PC.

Now, of course, whether he has not had no biopsy, or 12 cores, or 36 cores, you still can not ever know for sure that there is not some nasty G9 or 10 hiding in there somewhere. Same thing could be said about any person and any cancer. Who ever really knows what is going on inside of us at a level too low to be detected? And needle biopsies are such a shot in the dark, they can miss a cancer cell. But there is no reason to think that just because you know there are some G6s in there that there might also be some G10s. All you actually know is: G6. So all you actually know is: the odds are greatly in your favor right now. Along with a PSA not all that high(at least it is not 20 or 100), and I assume a negative DRE( correct? ), which would also bode in his favor.

So, if I was a G6, I would breath a sigh of relief and not be in any hurry for any treatment whatsoever, and apparently your Dr. Sleeper is of the same opinion, more or less. ( as a retired CRNA -anesthesia- I think your Dr. Sleeper should have been an anesthesiologist rather than urologist ;) ) In the mean time, your slides are being further checked for risk, and later there is the Johns Hopkins(Epstein) thing. Until one of those gives you some clear evidence of additional risk, I would not be in a hurry to do anything. BTW, if he truly is G6 ( and no reason to think otherwise) I would be really surprised if the MRI showed anything. If it does not, that will just be another reason for Y'all to relax.
PSA 10.9 ~112013
Bx on 112013 at age ~65yrs, with 5 of 12 pos, G9(5+4), T2B.
RALP with lymph nodes at Vanderbilt 021914. (nodes clear, SV+, G9 down graded to 4+5, 1 focal margin )
only rare pad use after 1 year
PSA <.01 on 6/14 and all until 9/15 = .01, still .01 9/16, .02 on 3/17,6/17,10/17, .06 1/18, .06 4/18, <.05 7/18, .06 10/18, .06 04/19

Post Edited (BillyBob@388) : 10/22/2019 7:31:33 AM (GMT-6)

Posted 10/23/2019 5:14 AM (GMT -7)
BillyBob,

Thanks for your reply.

He’s never had a DRE unless doc did one after he was put to sleep for his biopsy. If he did that, he didn’t mention it to us.
When hubby went for his initial visit the doctor asked him if he’d ever had one and the answer was no. He didn’t see any reason to do one then.

Hubby’s fear isn’t dying of this cancer. His fear is treating it! He doesn’t want to. We are just hoping and praying the “good news” verifies and he won’t need to.

He has infinitely more patience than I do. The hurry up to wait is very hard. He’s busier than me with his job. Two weeks ago he was in the Netherlands and this week he’s in Houston. I’m the CEO of a self pay direct access lab testing company (PSA anyone? Lol) but my employees do most of the work. I’ve been looking for projects to do at work to get my mind off of this. How does that saying go? An idle mind is the devil’s playground? Something like that.

Next time we see Dr. Sleeper, I’m going to ask him how many times he’s been asked why he didn’t go into anesthesia! lol
Posted 10/23/2019 6:03 AM (GMT -7)

star0210 said...
BillyBob,

Thanks for your reply.

He’s never had a DRE unless doc did one after he was put to sleep for his biopsy. If he did that, he didn’t mention it to us.
When hubby went for his initial visit the doctor asked him if he’d ever had one and the answer was no. He didn’t see any reason to do one then.

Hubby’s fear isn’t dying of this cancer. His fear is treating it! He doesn’t want to. We are just hoping and praying the “good news” verifies and he won’t need to.

He has infinitely more patience than I do. The hurry up to wait is very hard. He’s busier than me with his job. Two weeks ago he was in the Netherlands and this week he’s in Houston. I’m the CEO of a self pay direct access lab testing company (PSA anyone? Lol) but my employees do most of the work. I’ve been looking for projects to do at work to get my mind off of this. How does that saying go? An idle mind is the devil’s playground? Something like that.

Next time we see Dr. Sleeper, I’m going to ask him how many times he’s been asked why he didn’t go into anesthesia! lol

I’ve gone back to work. (Even though it makes little difference in my financial health)

Best therapy I’ve had in 5 years. Work is a vacation compared to the alternative.

You all will be fine.

And I was the same way. The cancer concerned me. The treatment terrified me.

Good luck
Posted 10/23/2019 7:36 AM (GMT -7)
I had 3 positive cores on the 1st bx and 4 the on 2nd bx a year later. The 4 on the 2nd one were all on the apex side. I work with a medical urologist and a urology surgeon and it doesn't seem to concern them. JH second opinion and genomics are great ideas. The 3TmpMRI is a good next step and should be several months after the bx.

I must admit that the verbage on the pathology report is confusing. My report verbage reads (xx% of one core) for any of the positive cores. I'd definitely want clarification on that.
PSA:
2/16-5.2
5/16-2.8,fPSA-13.2%
10/16-4.6,fPSA-11.5%
1/17-4.4
dx:3/17;age 55
bx:3/12+GS6;5%,5%,20%,28g confirmed by JH
OncoDX-19 V.Low Risk
mpMRI:7/17-2 lesions(PI-RADS 3,2)
7/17-1.9
10/17-2.1
1/18-2.8
4/18-4.3
4/18 bx:4/12+GS6;5%,5%,20%,30%,32g
JH-20%&30% to 10%&20%
11/18-5.1
1/19-3.5
mpMRI;1/19;no focal abnormalities consistent with PI-RADS 3,4,5.
4/19-4.0
7/19-3.9
10/19-4.0
AS-Emory/Atlanta
Posted 10/30/2019 3:28 PM (GMT -7)
Update...we found out that hubby’s insurance covers treatment at MD Anderson at 100%. Zero out of pocket cost to us.
We have an appt on Dec 16. Ugh, so far away!
Still waiting on the results of the genomic testing.

Hope you all are having a good week!
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