I have come to the next fork in the road of my prostate cancer journey and I seek the wise counsel of the members of this group.
Here are my stats and the latest chapter of my story:
2/3/22 - mpMPRI : PI-RADSv2 Category 5.
5/10/22 - Transperineal Biopsy 12-core template + fusion targeting of Left PZ lesion.
(7) Benign;
(1) ASAP, right posterior medial
(4) Gleason 6 (3 + 3 ):
10%, right posterior medial; 25%, left posterior lateral; 50%, left posterior lateral; 40%, left lateral wing
(1) Gleason 7 (3 + 4), "involving 1 of 1 core and
40% of the tissue, discontinuously. - 10% of pattern 4 is identified"
"Summary of additional features:
Perineural invasion: absent
Intraductal prostatic adenocarcinoma: present"
5/25/22 - My urologist delivered my cancer diagnosis. I was prepared to hear Gleason 3 +4 . . or worse. The presence of "intraductal" sent me into a mild panic after only the briefest of research.
I am already deeply indebted to the members of this group.
I had no idea that there was more than 1 type of biopsy and I left my first Cancer Center of Excellence which scheduled a TRUS and was not able to offer a TPB. I knew from the advice I received here that I would send my biopsy slides to Dr. Epstein for review even before I received my results. The importance, the necessity, of a 2nd opinion on my pathology report was confirmed.
My job now is to get my diagnosis as 'right' as may be possible before I decide on a treatment course. I don't think I have enough information to assess the extent and aggressiveness of my cancer.
I was discouraged from getting a second read of my pathology from my Second Cancer of Excellence and so I have decided to go to another Cancer Center for diagnosis and treatment.
I may have just been unlucky in my experience at Cancer Centers in Philadelphia. Nonetheless I am giving up on hometown options. I am thinking Hopkins and/or MSK as my next stop(s) to figure my cancer out.
I ask for your help in learning what other tests may help me better assess what I have now and what I may face over time. Your recommendations about where to go and who to see would be greatly appreciated as well.
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Thank you Tall_Allen. I have no doubt that I should rely on Epstein's evaluation. After 4 months of worry about the effects of Surgery or Radiation, it is hard for me to get my mind around the possibility of Active Surveillance as an option. I just need to find a Team now to look at all my tests and health profile and advise me as to whether I need additional testing before I consider my treatment course.
I think you will be happier in the long run if you empower yourself to make your treatment decisions rather than slavishly follow what someone else dictates. Teams are seldom a good idea. I suggest you meet with an expert in active surveillance (AS).
AS protocols usually involve a confirming mpMRI-targeted biopsy within a year.
I was just wondering how to go about getting your/my biopsy slides to someone to get a second opinion I am being seen at the Salem VA medical center and the only thing that is offered there is surgery and I ask if radiation was an option and was in so many words told not a good Idea. My PSA WAS 5.65 IN MAR OF 2022 HAD DRE IN APRIL AND TOLD NO SUSPICIOUS AREAS FELT SENT FOR PROSTATE MRI IN EARLY MAY THE RESULTS FROM THAT Prostate within normal size limits 3.1 x 3.8 x 4.5 cm (AP x transx CC). Heterogeneity of the transition zone with a small at least
partially encapsulated nodules, largest 1.1 cm within the ventral
aspect mid left hemigland. Isointense diffusion of the transition
zone with areas of mild hypointense coefficient signal with the
exception of a 0.6 cm more prominent hypointense focus within
left paramedian mid gland, ADC map image 13.
Within the posterior lateral base to mid left hemigland is a 0.9
cm hypointense T2 focus (high-resolution axial T2 images 13-14,
high-resolution coronal T2 images 18-19) abutting the prostate
capsule. No definite extracapsular extension. This demonstrates
prominent hyperintense diffusion and hypointense coefficient
signal, image 13-14. This area demonstrates a early enhancement
on dynamic postcontrast imaging. Additional areas of mildly
hypointense T2 signal including streaky hypointensity within the
bilateral peripheral zone maintaining isointense diffusion and
mildly hypointense coefficient signal.
Visualized portions of the pelvis with no adenopathy by size
criteria with more prominent bilateral inguinal nodes. Remainder
of pelvic viscera unremarkable. Osteoarthritis of the lumbosacral
spine and sacroiliac joints. No osteoblastic lesions of the pelvis.
PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3 = 6 (GRADE GROUP 1),
INVOLVING 10% AND DISCONTINUOUSLY INVOLVING 30% OF TWO OF THREE
CORES
F) PROSTATE, LEFT BASE X3, BIOPSY:
- PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+4 = 7 WITH 5% OF PATTERN
4 (GRADE GROUP 2), INVOLVING 20% OF ONE OF THREE CORES.
So in looking at this if reading this correctly and not sure that I am that I got Gleason score of 7 from 5 percent of the total from the 3 cores of which only 20 percent of one core was involved.
So I thinking maybe I should get another pathologist to look at it. And get someone to explain it to me because so far no has explained any of this to me. So any help in a direction would be great. I would also like to get this the tall something or another and sorry I can't remember the rest of his name also sorry so I am just a really confused mess right now. Any help would be great.
If he confirms it, your Gleason score is 3+4 - it is always the highest score of all your cores. There is only a small percent of pattern 4, which means that you are probably still a good candidate for active surveillance.
Maybe make an appointment to see Judd Moul at Duke University to discuss.
I recently received my second opinion from Jonathan Epstein at Hopkins a couple of weeks ago. And today I was able to speak with him. My initial biopsy report showed several Gleason 3 + 3 and one Gleason 3+4 with the 4 making up 10% of the cancer. Dr. Epstein's 2nd opinion was that my Gleason 3+4 should be downgraded to a Gleason 3+3.
My urologist discouraged me from getting a second opinion. After I persisted and got the second opinion, he would not discuss the difference of the two reports and what that could mean for my treatment.
I found the Cancer Center's 'bias' to treatment disturbing. I wanted to talk about the extent and aggressiveness of my cancer; the urologist and the radiologist wanted to zoom past the diagnosis and talk to me about what treatments were appropriate and my schedule for choosing from the smorgasbord of options they presented.
Setting up the second opinion and connecting with Dr. Epstein was a very manageable experience for me and I would be happy to share my experience if you would like to contact me.
Dr. Epstein told me I was a very good candidate for Active Surveillance. However my PiRads 5 from a mpMRI leaves open the possibility that more agressive cancer was missed in the biopsy. A fusion guided biopsy is in my future in the next 6-12 months.
I am now looking into the AS programs at both Hopkins and MSKCC. I am aware that in 6-12 months or at some later date I may have to decide on active treatment.
Tall_Allen and others in this group have given me invaluable advice for the last several months. Getting a second opinion from Jonathon Epstein was one of the first recommendations I received. Best use ever of $300.
If a Doctor discourages you from considering radiation as a treatment option and fails to explain clearly your MRI and Biopsy reports, I encourage you to find a doctor (who only 'does' prostates) at another cancer center.
". . . I just need to find a Team now to look at all my tests and health profile and advise me as to whether I need additional testing before I consider my treatment course. . ."
You have the best-available read of your biopsy cores. That pretty well determines what you should do, according to the latest NCCN "standard of care" guidelines. (Sorry if I have the name of that document wrong.)
. . . What's the use of involving more Wise Men, who may not agree with each other?
Hiya, just a cautionary note. Although the downgrade from Dr. Epstein is great news you (I think) still have positive cores on both left and right sides. This is a worrying feature because either PC is extensive enough to have grown from one side to the other (worrying) or has had multiple foci or origins (also worrying). In my case I had only 2 of 12 cores positive with low percentages of Gleason 3+3 and 3+4 but one each on right and left. After biopsy despite moderate PSA of 5.7 this put me in PT2c which is the most advanced variety of stage 2 diagnosis and triggered immediate surgery. This turned out to be the right thing to do because PC was outside the capsule and my surgeon was only able to get most of it leaving me with a small positive margin. My long term prognosis is still pretty good. Followup radiation has been deferred since my PSA is still undetectable and I have a low Decipher score but I’m glad we didn’t wait and watch for a few years. Sorry to possibly ramp up your anxiety but I thought some extra info might help. Cheers.
Thank you and you needn't apologize. I am learning how to surf the anxiety of my prostate cancer 'journey'. Please help me understand: I thought a Pathological T was determined following RP and not biopsy? My tumor was not determined by DRE but rather the mpMRI.
I don't know my CT or rather it wasn't provided to me. Per AJCC I should be, I believe, CT2c. Does that make a difference in my risk and diagnosis? I can't tell you and that is part of the reason why I am unclear about my next steps.
At this point, all I think I know is that I am a Gleason 6 with a big honkin' tumor.
It appears that I have not been clear in my questions or clear in my thinking about my next step(s) to confirm the extent and aggressiveness of my cancer:
What, if any, additional testing should I consider to gain clarity on my cancer and risks?
[I am unclear about terms/tests: molecular, genomic, germline, somatic, molecular? When is genetic testing advised as part of a decision for Active Surveillance]
Regarding a "Team": I am not seeking to outsource my treatment decisions to a medical Committee. I just haven't found a Cancer Center and/or Doctors that will engage with me in Shared Decision-Making about my Diagnosis and Treatment.
I have had enough or too much experience in my life with misdiagnosis of my health and medical conditions. With my prostate cancer I have had to research/double check the recommendations of doctors for obtaining a biopsy and for evaluating the pathology. I don't want to work with doctors who don't have time or patience for my questions or my need for understanding before I make decisions about my healthcare.
I am in search of the doctor(s) to work with at another Cancer Center. I need a second (or third) opinion on my cancer. If Active Surveillance is my choice, I will need to determine the 'best' place for me to manage that process. Centers outside of Philadelphia seem to be where I am headed and recommendations are welcome and would be greatly appreciated.
Thanks to all for your assistance and the care you are giving to answer my questions.
Dr. Christian Pavlovich is or at least was head of Johns Hopkins Active Surveillance (AS) program in Baltimore. While I do recommend him one other member here in forum waited to long so maybe he will speak up. Pavlovich IMO is one of the best Urologists but he is not a hand holding loving type. But that was totally fine by me. I had a Epstein Gleason score of 5+5 so AS was not an option. I moved fast in the heart of the pandemic. I look back and it was all just a bad dream and now all good
Oh one last thing... Your chances of a positive outcome are very good. The adage I picked up here is that most men die with Prostate Cancer, not from it....
I greatly admire your resilience. Dealing with Gleason 5+5 during the Pandemic must have been a terrific challenge. May the remnants of your bad dream fade away so you will be left only with "All Good".
I don't require warm and fuzzy. I am a bit weary of Doctors who act as if I am too 'frail' nor intelligent enough to handle my cancer diagnosis. A direct communicator, a so-called straight shooter, would be sufficient for me if my doctor is willing to explain the basis for his/her recommendations/judgment. A touch of humility would be nice but I may be asking for too much.
My reading suggests to me that I may not meet the criteria for Hopkins' Active Surveillance Program however it was certainly on my list to check out. I appreciate your perspective on Dr. Christian Pavlovich and I will look into him during my Johns Hopkins research.
I did end up getting MRI guided SBRT for my Gleason 3+4 tumor at MSKCC in NYC last December. This after meeting with their top surgeon as well. Oncologist tells me I have a 95% chance of not seeing it again. After reading the decipher score he also (Zelefsky-the local rock star I am told) declined any hormone treatment. I can’t say I enjoyed the experience. But every single person at MSK was thoughtful, kind, professional and fastidious. This was a huge difference after leaving Mount Sinai in disgust.
I hear the MSK satellite in NJ is also quite good, but my experience was at the main campus. Best of luck. Feel free to reach out with any additional questions.
Thank you WilsonPickett. I plan to contact MSK. A little unclear on The Who’s Who. The name of the top surgeon you saw? Zalefsky is an in-fact rock star or a MSK ‘rock star’? I am more comfortable talking about prostrate cancer than Rock Music. This should give you the correct impression that I am ignorant of the latter since I am only beginning to learn about my prostrate cancer.
Zelefsky is one of the top oncologists at MSK in NYC specializing in PC, Vincent Laudone is the surgeon to see @ MSK, although I’m sure there’s well more than one. I use the term rockstar to imply extremely well-known. Shouldn’t have assumed that anybody would know what I was talking about.
Please, no need to apologize. Attempts at (self-deprecating) humor in digits about what I don't know about rock music was not a good idea on my part. You are being quite informative. Although I have some contacts at MSK, learning from the men in this group and their experience gives me quick start in my research of who I may want to see at Sloan Kettering. Thank you again.
Last tip: I found for me that surgeons like surgery, that’s what they’ll push, because that’s what they know. Oncologist on the other hand, have numerous treatment options to offer, many with the same outcome rate as surgery without the invasive procedure. Just some thing I found thought-provoking, which ultimately resulted in me ending up going with radiation.
I am slow on the uptake, sorry. Do I understand correctly that you started with Zalefsky and that led to your eventual decision on radiation?
I reached out to Prostate Cancer Research Institute, early on, for referrals to a prostate medical oncologist, thinking I needed advice and guidance from a doctor who didn't have a stake in the treatment option I may eventually choose. Is there even an "Epstein" medical oncologist expert in prostate cancer, save for Mark Scholz. I put my 'conversation' on hold concentrating on getting a transperineal biopsy and its results.
Prostate Cancer Care strikes me as terribly ad hoc. I keep finding myself having to fact check the advice and expertise of the doctors who recommend treatment for me. My first urologist failed to inform me of the options for and risks of a biopsy. My next urologist discouraged me from getting a second opinion on my biopsy slides.
Were it not for this group I'd be sitting right now with a Gleason 3+4, weighing my options between RP and Radiation. I am very fortunate (damn lucky I'd say) to have discovered this forum and am grateful as well.
True enough. As a result of this forum I did a great deal of research, months actually, after Tall Allan told me to take my time. So I did all my homework, studied all the different types of treatments and their outcomes and decided on Zelefsky after Tall Allen ( clearly the resident PC guru here ) said he was the gold standard in New York City. Zelefsky also said to me “why would you have an invasive procedure, when you could have a non-invasive procedure, if both presented the same statistical outcome”. That was a pretty convincing argument for me against surgery, and I did check, and the outcomes are the same.
Although I have long standing ties to MSK through it’s pediatric cancer research and treatment, I never considered that one day I might be seeking treatment there. You and Tall_Allen have given me invaluable advice. I now know where to start. Thank you again.
Life is full of surprises… Some of them not too good. But it sounds like you’ve got a pretty favorable prognosis, which means you’re blessed, at least in the cancer arena. Best of luck to you
I had a similar experience. PSA 11.5, Gleason 4+3, Cancer T3b. Surgeons wanted to do operate, radiologist recommended EBRT. Head of Department, a surgeon, said although he could operate, because of the slight spread to the seminal vesicle, he would want to do follow up radiation, so why not just go with the radiation? I saw the logic and followed his advice. And cross fingers, so far so good.
My recommendation - make sure you don't let the cancer spread like I did before you catch it, as that will cut down on your treatment choices.
I am a 75 years old with G(4+3=7)Grade 3 on more than 50% of the Prostate.MANY health problems stopped me from having RP and my cancer was VERY aggressive so even with the COVID-19 that put many people on hold, I was put on first lane.
ADT started on April 4th 2020, then VMAT-RT 3Gy X 20fx = 60Gy in June 2020.
PSA pre-Dx = 20.4 μg/L then went rapidly to <0.03μg/L and stayed at that level until March 09 2022 went to 0.04μg/L.
From the sounds of it, you are doing all the right investigation. You have time with AS to visit with docs and evaluate options. MSK is a great center of excellence. So is JH.
Thank you and I very much appreciate your response.
Yesterday the urologist who performed the biopsy put me in the position of having to choose between the two pathogists and reports. My urologist said he is ‘going with his guy’.
While I prefer Dr. Epstein’s reading of my slides, I am cognizant that it could have gone the other way; i.e, Dr. Epstein could have assessed my cancer as a Gleason 4+3 or ‘worse’. Afterall, I am a Pi-rads 5 with a large, uninvited tumor ‘down there’.
My approach would be the same with any significant difference between the original report and a second opinion: get as much information as possible about the extent and aggressiveness of my cancer before I proceed.
I now have to identify another Cancer Cancer (my third go at this) for a second (or, sigh, third) opinion on my diagnosis and treatment plan.
I am still unclear however, after digging into the NCCN and American Urological Association Guidelines, whether genetic tests or other tests might provide additional data for an AS or treatment course of action. I apologize if I have missed others perspective on testing in prior posts.
The advice and experience of members of this forum have already proven invaluable to me. Thanks again to you and all.
My Urologist also wanted to use his MRI Center, Pathologist etc because he trusted them and worked with them daily. That makes a ton of sense. But so does another opinion so I hate to say if but if were me I would proabbaly go for a third from another highly recommended pathologists.
Also having been through my PCa episode, and with other important life impacting decisions, when in doubt, move out! I've been more wrong as many times as being right but it would drive me crazy waiting and watching. This is all just IMO.
No urologist should decide for you. You decide for you, you should take as much time as you need, you should see as many people as you need, and then you should make a decision based on the input you received. If my urologist made a choice for me instead of advising me, I would fire him.
I had both genetics tests. They delivered opposite results. At the end of the day, I was uncomfortable w AS after a (repeat) biopsy disclosed 3+4 (Epstein). I finally decided on SBRT at UCLA and pleased with the result. If I lived in the northeast, I would have gone w Zelenski at MSK.
I might be in the same place as you after a second biopsy. For now I accept the 3+3 from Epstein. I am also uncomfortable with AS but I am even more uncomfortable with radiation and surgery.
Keep testing. Keep watching. If I had a do-over, I’d be much more careful about my diet especially re sugar intake. It could be, that’s just my physiology but you want a diet that minimizes inflammation. To me that’s the best way to be on AS. Also from my POV, there is no comparison between RP and radiation if you have the choice (ie. Low to intermediate risk prostate ca). There is plenty of testimony, much of it more qualified than mine, on the subject.
I was just wondering how to go about getting your/my biopsy slides to someone to get a second opinion I am being seen at the Salem VA medical center and the only thing that is offered there is surgery and I ask if radiation was an option and was in so many words told not a good Idea. My PSA WAS 5.65 IN MAR OF 2022 HAD DRE IN APRIL AND TOLD NO SUSPICIOUS AREAS FELT SENT FOR PROSTATE MRI IN EARLY MAY THE RESULTS FROM THAT Prostate within normal size limits 3.1 x 3.8 x 4.5 cm (AP x transx CC). Heterogeneity of the transition zone with a small at least
partially encapsulated nodules, largest 1.1 cm within the ventral
aspect mid left hemigland. Isointense diffusion of the transition
zone with areas of mild hypointense coefficient signal with the
exception of a 0.6 cm more prominent hypointense focus within
left paramedian mid gland, ADC map image 13.
Within the posterior lateral base to mid left hemigland is a 0.9
cm hypointense T2 focus (high-resolution axial T2 images 13-14,
high-resolution coronal T2 images 18-19) abutting the prostate
capsule. No definite extracapsular extension. This demonstrates
prominent hyperintense diffusion and hypointense coefficient
signal, image 13-14. This area demonstrates a early enhancement
on dynamic postcontrast imaging. Additional areas of mildly
hypointense T2 signal including streaky hypointensity within the
bilateral peripheral zone maintaining isointense diffusion and
mildly hypointense coefficient signal.
Visualized portions of the pelvis with no adenopathy by size
criteria with more prominent bilateral inguinal nodes. Remainder
of pelvic viscera unremarkable. Osteoarthritis of the lumbosacral
spine and sacroiliac joints. No osteoblastic lesions of the pelvis.
Sent for biopsy end of May following results
FINAL DIAGNOSIS
A) PROSTATE, RIGHT APEX X2, BIOPSY:
- BENIGN PROSTATE TISSUE
B) PROSTATE, RIGHT MIDDLE X2, BIOPSY:
- BENIGN PROSTATE TISSUE
C) PROSTATE, RIGHT BASE X2, BIOPSY:
- BENIGN PROSTATE TISSUE
D) PROSTATE, LEFT APEX X2, BIOPSY:
- BENIGN PROSTATE TISSUE
E) PROSTATE, LEFT MIDDLE X3, BIOPSY:
PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3 = 6 (GRADE GROUP 1),
INVOLVING 10% AND DISCONTINUOUSLY INVOLVING 30% OF TWO OF THREE
CORES
F) PROSTATE, LEFT BASE X3, BIOPSY:
- PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+4 = 7 WITH 5% OF PATTERN
4 (GRADE GROUP 2), INVOLVING 20% OF ONE OF THREE CORES.
So in looking at this if reading this correctly and not sure that I am that I got Gleason score of 7 from 5 percent of the total from the 3 cores of which only 20 percent of one core was involved.
So I thinking maybe I should get another pathologist to look at it. And get someone to explain it to me because so far no has explained any of this to me. So any help in a direction would be great. I would also like to get this the tall something or another and sorry I can't remember the rest of his name also sorry so I am just a really confused mess right now. Any help would be great.
Update to my 'story': Dr. Epstein returned my call and answered all my questions about his '2nd opinion' of my biopsy pathology. I am a good candidate for active surveillance but a repeat biopsy is indicated 6-12 months. Taking the good advice I have received here: I have appointments next month at MSKCC with Dr. Zelfsky and Dr. Ehdaire. The process of scheduling appointments was handled professionally and promptly. Thanks to all.
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