I just received my 2nd opinion report of the pathology slides back from Johns Hopkins - performed by Jonathan Epstein on 1/10/2022.
Background - Diagnosed on 10/11/2021 with Stage 2, T1c, Decipher 0.47, PSA 3.57 (no ECE or SVI), PI-RADS 2. Original pathology reported 6 cores involved of which 4 were Gleason 3+4 and 2 were 3+3. One of the 3+4 involved 25% of category 4.
The Johns Hopkins 2nd opinion downgraded 5 of the 6 involved cores pretty significantly.
The new results are still 6 cores but only two are 3+4 they both have less than or equal to 5% of category 4. So I'm wondering now if this makes AS a possible option?
I have been trying to decide between SBRT(Cyberknife) and HDR for treatment and now this updated pathology has me pausing at the moment. My urologist doesn't want to discuss the new pathology - he said to discuss it with Hopkins.
Any thoughts or opinions appreciated.
Thanks,
Mike
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Mando1
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Decipher .46 is intermediate isn’t it? Think I would have it treated. The forums are chock full of AS guys that woke up one day to a cancer that just decided to take off and cause problems. And the biopsy is just what the needle in a haystack came up with.
Hi Anomalous,Thanks for responding. Yes 0-0.45 is considered low risk of aggressive cancer by Decipher and 0.46-0.60 is intermediate risk. My 0.47 just puts me into the intermediate category but on the very low intermediate side.
You make a great point of not knowing when it may take off with AS. The biopsy was targeted and the urologist said he hit the suspicious area but yes there may be more to it. I am still leaning towards treatment to be safe but I have to look into this new AS option that seemed to come out of left field.
Good to rethink this. All treatments come with side effects including SBRT and HDR. With two cores at less than 5% GS 4 you may indeed be a candidate for AS. You should get an opinion from a doc at a top cancer center who specializes in Active Surveillance. My recommendation is Dr. Behfar Ehdaie at MSK.
Thanks Rosenjpj, that's very good advice. I was thinking about having a consult at Hopkins. They have something called a multi-disciplinary consult where they look at all your option and then suggest what might be best. I know the decision is mine but figure this can't hurt. I'll also look into the MSK person you suggested.Thanks,
I've heard that Epstein is very good about discussing the pathology report with patients.
If the two cores with GS3+4 were from the same area, they might have drilled into the same tumor, so it may be large. You have to estimate the total tumor volume, taking into account where the positive cores are, and the % of each positive core that has cancer. The 5% pattern 4 is sufficiently low for AS, but if your tumor volume is high (above 0.5 cc), it may be better to think about treatment. I'd be interested to hear what Epstein said. Ask him if he has an algorithm for estimating the total tumor volume.
In this presentation and Q & A Epstein addresses AS and when it's acceptable for 3+4, in detail and with some of the research. You should watch it if you haven't seen it. You might want to ask him directly about AS in your own case.
I was in a somewhat similar situation, though it was less of a question regarding getting further treatment. The pathology report from my urologist's lab showed 4 of 12 cores positive, 2 of them 6 and 2 of them 3 +4. One of those 3+4 cores had very small amount of pattern 4 but the other was over 60%. MSK's analysis of the pathology downgraded that -- that core became 45%. (interestingly they upgraded one of the cores that were 6 to a 7, but with 5% of pattern 4).
From when I was diagnosed in 9/21 I'd wanted to pursue AS, and my urologist said it was a "fair" decision but that it would be an aggressive AS (I think he knew he'd be saying I should get further treatment by the time of my next PSA test in Jan of '22, three months later).
But I went to MSK for a second opinion on all, and there was agreement there that I should do something. My radiation oncologist there was clear it wasn't a rush, that I had time but should do it within a few months. And that's what I did (urologist fully agreed after seeing RO's notes), and I just did LDR brachy little over a week ago. My pattern 4, with 45%, was well beyond what yours seems to be. It was right at the cut off point that Epstein looked at in his study, and still he thought it risky. So I know I made the right decision.
Good luck with all, and glad you got that second opinion.
Sounds like you made a great decision to treat it and by treating it with LDR. It's very effective and has been around a very long time.
I also have some moderate BPH and the docs and research suggests that HDR and SBRT produce a shorter duration of urinary symptoms so those are the two treatment options that I am deciding between. But must first determine if I should begin with AS for some period.
Thanks for the great info and best wishes on your healing journey!
I am one of those AS guys who's PC took off and went from 3+3 slow growing to 3+4 and 4+3 with nerve involvement. I elected for RP because of the nerve involvement.
I had authorization for Proton Therapy but decided on AS because of the OncoType score showing slow growing PC.
Also, you should go to a cancer center of excellence and stay away from Urologists who don't specialize in PC.
Hello Sryoung,Thanks for your reply. Very interested to hear how long it took in your situation to go from the 3+3 to the 3+4 and 4+3? Also how active was your AS? Just wondering if you feel a more aggressive surveillance may have helped? Also I'm not very familiar with OncoType - were you near their next level or solidly in the slow growing category? Wondering if you felt the test was useless.
If I did do AS, in my mind it would be for a limited period. So one may ask then why bother, just get it treated. So I have two main reasons. First I have radically changed my lifestyle - have become vegetarian starting a few months ago and focusing on foods and other things that are reported to be known cancer killers. Also increased exercise. So I'm interested to see if that significant change has any affect on my cancer. Secondly, the field of Prostate cancer has been producing so many rapid advances in terms of diagnostics and treatments that a year from now the landscape of options may be improved.
My biggest reservation with AS is right now I seem to be in a good position to do a mono therapy and try and knock it out. Of course I don't want to lose that opportunity by waiting.
Mando, it's interesting that you raise health, fitness, and diet. I've been vegetarian for over 30 years, eating all the right foods. I've also been physically fit all those years, weight-training, low body fat and a lot of muscle mass. I run 12 miles or more per week.
I sometimes wonder if it didn't matter -- or, conversely, if my prostate cancer would be worse/more advanced or if it prevented other types of cancer, like colon cancer. Certainly it's helped with other health issues, like strengthening the cardiovascular system, etc. But who knows?
All very good points. I also have been very fit and very active all my life. Also was mostly plant based but did not totally exclude animal products. I wonder the same thing - would it have been much worse if I had not done those things or if I were a vegetarian and increased fitness could it have helped prevent it from occurring.
We'll never really know those answers for sure but when you look at stats and read books like The Blue Zones and the China Study it becomes abundantly clear that folks who avoid most chronic diseases are those who eat foods from the earth, avoid or minimize animal proteins, and live a simpler but active life. So diet and exercise proves over and over again to be key in avoiding chronic diseases.
One of the books I've read suggests that severe stress could also be behind chronic illnesses and that for prostate cancer, many men have had the disease for 10-15 years before finding it during testing or scans/biopsy's. So I looked back at my life then and was going through a very stressful and painful divorce that lasted 3 years. Could certainly have been a possible root cause. Again will never know.
Most important thing now is to focus on the present and determine the best plan then move forward on that plan. And you have done that so continued best wishes on your now Healing journey!
Because the OncoType assay said that my cancer was slow growing I elected to get biopsies every other year. So, it took less than 2 years to grow considerably.
My case mirrors yours. I’m doing AS as of February 2019 when I had my first MRI fusion biopsy. Another MRI fusion bx in February 2020, then an MRI in February 2021 and eventually a 3rd MRI fusion bx in November 2021.
I had Epstein at Johns Hopkins overread my first two biopsy slides. Each time he “found” some 4 where my local pathologist found only some 3.
So I talked to Dr. Epstein, nice man. I then got a 2nd opinion at JH with the head of their AS department in June 2021. At that time JH also overread my 2021 MRI, and came up with significant differences (in my favor). That doc recommended a 3rd bx - aTP bx - and added (he’s kinda humerous to begin with) - “The problem you have, Bobby, is you’ve seen two doctors”. Ha! I laughed my ass off!
I saw my local onc shortly thereafter, and shared my office visit notes from JH with him. His cancer center doesn’t do TP, said it was just a “New York thing” and wouldn’t yield different results. To avoid another out of state trip I had him do my 3rd bx in November, 2021.
AGAIN the local pathologist found no 4. I haven’t yet sent these third set of bx slides to Dr. Epstein (turns out I have somewhat of a life outside of having and researching 2 cancers, who knew? haha), but plan to.
So seeing two doctors can make you see double. It’s a double-edged sword, to pile on the metaphors.
My numbers per Dr. Epstein from February 2020 MRI fusion biopsy:
C: G 3+4=7 (Grade Group 2, involving
10% of one core, less than or equal to
5% Gleason pattern 4 (Pattern 4 has
in areas a cribriform morphology)
H: G 6 (Grade Group 1), involving
10% of one core
And per my local pathologist from November 2021 biopsy (18 cores – MRI fusion from 2021 MRI);
C – right lateral base; I – left lateral
base: “Rare atypical glands suspicious
for adenocarcinoma”
M – left peripheral zone, ROI 1; PI-
RADS 3. Benign prostatic and seminal
vesicle/ejaculatory duct.
N – right base; ROI 2;
adenocarcinoma. Grade Group 1.
Gleason 3+3=6, involving 2/3 cores, 1-
4% of the tissue.
[my notes: “NB: Nothing found in H. Nothing found
in C. But C was the area JH said has all the 7!”]
Message me if you want to rap about this stuff. But here’s a hint as to where I’d go for a “final answer” if it were me: I know of a nice place to stay in Baltimore where you can walk to an Orioles game….
And yes from my limited experience with all this (diagnosed mid October 2021) I would always have the biopsy slides reviewed by Dr Epstein. I was amazed as to the differences between my original pathology and his expert review. I looked up the bio on the original pathologist and she had been doing pathology for 30 years! So much hinges on a correct pathology analysis.
I was on AS for 4 years after a couple of biopsies showed some low-percentage Gleason 6 (two cores, 1%, and 3% respectively). Then in 2021, after an MRI showing a PIRADS-3 lesion, a biopsy revealed some Gleason 7 (3+4) -- the percentage of Gleason 4 was 10% and my Decipher score came back at .22, but the linear amount of tissue with carcinoma was 20 mm.
I probably could have stayed on AS for a bit longer, but with results like that, it was just a matter of time for treatment within the next three years. I decided to go with treatment at that point and went with SBRT at MSKCC.
Going on AS with the Gleason 6 took a lot of "mindfulness" practice for me -- But, I was still able to consider that I could be on AS for 10 years. Once the Gleason 7 showed up, I knew the treatment was in the foreseeable future, and then stress level would be pushed that much higher with each appointment and check up -- For my mental state, I elected to get treatment right after Gleason 7 diagnosis.
Thanks very much for sharing your experience with Active Surveillance. I can understand the constant wondering (and worrying) during AS if it has gotten worse. I'm just starting to explore the feasibility of it at this point. If I could do it for maybe a couple of years while feeling comfortable that it won't take off then I'd be interested in that. Figuring definitive treatment will be needed at some point not too far down the road.
Are you glad that you did stick with AS for as long as you did?
Yes, because I had four biopsies before any Gleason 6 showed up in 2017. My confirmatory biopsy nine months later then ended up showing the same amount of Gleason 6, and then a biopsy after in 2019 showed no cancer at all. The MRI in 2021 showed the PIRADs-3 lesion, and all the Gleason 7 was found in one transitional zone after another targeted biopsy. I think I hit it with treatment precisely at the right moment.
If no Gleason 7 ever showed up, and my biopsies just kept revealing very low Gleason 6 or no cancer at all, I would have been comfortable to continue on AS.
That's a great question. I have not contacted him yet but I'm thinking he doesn't want a competing view of the facts. But really don't know yet. He like many other Urologists pushed for surgery right away because that's what he does for a living. Once I started looking at options I feel like he lost interest in my case. Will post once I do contact him.Thanks,
I've been warned about this from friends who are "ahead" of me and think I may be experiencing this with my uro, who is a surgeon. My uro also pushed for surgery right away.... glad I didn't.
I have been on AS for nearly 4 years. I changed to 100% plant-based diet and began rigorous exercise and daily brisk walking. My first MRI (6 mos after diagnosis) showed a reduction of 3+3 cancer lesion.
4+ years later, however, MRI fusion biopsy showed 3+4 in one core 30%, 3+3 in 3 cores 2%, 2% and 20%. OncoTypeDX score = 48%.
The problem with many treatments is that it treats the symptom (cancer) instead of the cause and recurrence seems somewhat high.... That is anecdotal because I'm referring to several friends/colleagues that have suffered recurrence.
Sounds we are very similar. Very impressed that AS was successful for 4 years. Are you deciding on treatment now that 3+4 was discovered or are you thinking of going longer on AS?My Decipher score was 0.47 so just into the intermediate risk but as low as you can go in that category. I scheduled a multi-disciplinary clinic evaluation of my case at Hopkins in early February. I'll decide on AS or treatment with either HDR or SBRT after that.
I'm just now processing my recent biopsy and Onco score... I want to stay on AS and try to beat the cause, but I'm not going to risk if the growth continues. My next step is to get a 2nd opinion(s) of the pathology report, find an oncologist experienced in lifestyle interventions with PCa, and research best treatment in my situation.
One thing that's not clear to me or my doctor is if the recent 3+4 finding was always there but just now discovered or if it really just started. If it's always been there, that's more comforting considering it's taken 3-5 years to grow vs a few months if it's new.
I'm 57 now and was diagnosed at 52. I'm in excellent physical shape and play sports and workout regularly, so I intend to live a long life. My dad just passed at 92, so the genes are certainly there.
I love that you made the massive change and commitment to a full plant based diet. Again we are on the same path. I was focused on fruits and veggies but since my diagnosis in October 2021 I have transitioned to total plant based and actually feel much better than before.
I had the second opinion on the biopsy slides done at Hopkins by Jonathan Epstein - he is the highest authority in PCa. Hopkins makes it easy to have it done. Cost is around 300 and most insurance covers it. Absolutely the way to go before making any further decisions.
I am in the process of getting a 2nd opinion on my biopsy. When you had your second biopsy from Hopkins, did you Epstein do the review or was it one of the other docs on his team. Dr. Lotran or DeMarzo?
Personally and this goes against the current guidance but I say fook surveillance and go on the offensive. Search out and talk to many specialists... but do something. This passive wait and see crap ain't for me. But he its just IMO...
I often feel that way also. Just want to cover all bases as much as possible so I won't look back and wonder why I didn't consider all options. AS definitely has a scary side especially when you don't fit the exact profile for AS.
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