Just joined, biopsy shows 4+4 (Group 4)
My rising PSA, 5 years after Proton treatment prompted a PSMA/PET scan, followed by biopsy at Johns Hopkins. Biopsy shows 4+4 (Group 4) cancer, Can find no info on biopsy accuracy of previously radiated prostate tissue, but assume I will need treatment anyway. Are focal treatments possible or is it prostatectomy/ADT only? I would be grateful for any shared experiences of those in a similar situation.
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@billnumber6 He later resigned. The allegations (not proven in court) sound nasty:
❝Epstein, according to the report, was accused by other doctors of pressuring them to change diagnoses and defer to his wishes over several years. In some cases, according to the people familiar with the accusations, doctors said they felt pressured to give second opinions that agreed with diagnoses made by Epstein’s wife, a pathologist at a urology center in Beltsville, Md. In one case, a misdiagnosis led to a patient’s bladder being removed, according to the report and the people.❞
Source: https://centerforhealthjournalism.org/our-work/reporting/prominent-pathologist-leaves-johns-hopkins-after-allegations
@northoftheborder
sounds serious! and to think people have been trusting his opinions for decades....
@northoftheborder
This does sound troubling on the surface, but later in the document you give the link to, it said this
The hospital’s review, Epstein said, included the case involving the bladder. He said that an outside pathologist “agreed with my diagnosis and concluded that other pathologists would have arrived at the same diagnosis given the limited nature of the specimen, its morphology, and what clinical information I had at the time of the biopsy.”
The review, Epstein said, “concluded that all of these diagnoses were within good practice and what a reasonable pathologist would have diagnosed in the same situation.”
This seems to make the bladder report less damaging.
@jeffmarc They're quoting his self-justification for balance. It's also untested in any court or review, since he left before they could assess the allegations.
Unfortunately, that leaves us having to decide between Dr Epstein and his many professional accusers without a full and transparent review of the evidence.
If the allegations are true (and we have no way now of knowing), it would hardly be the first time that a brilliant and talented person let their ego and confidence outstrip their ability.
You've heard the old joke, perhaps?
Q: What's the difference between surgeon and God?
A: God knows he's not a surgeon.
😕
@billnumber6
You must be treated, but how! Since your recurrent cancer is found in the prostate only, it might make sense to try and find a surgeon that will remove it. I don’t imagine that a radiation oncologist will want to treat it with radiation again, Though it is puzzling why they left this much of your prostate around after proton radiation.
What has the RO that did the initial proton radiation say about what you should do?
Did they just not radiate that area and they can do it again,Because it’s not going to affect your lifetime radiation dose. This is one thing that you really need to speak to that radiation oncologist about and find out what your options are with them, And why the prostate wasn’t fully treated.
To the extent it is relevant, when I was reciting to my urologist/surgeon at Mayo why I had decided on surgery over radiation, one of the things I mentioned was that once radiation was done, you could not go back and have surgery. He corrected me by saying that surgery can be more difficult, but we do do it in some situations.
@dhasper
Yes, it can be done but with great difficulty and as he said - they do it "sometimes". After radiation gland becomes hard, stiff and full of scar tissue. It is hard to peal it off the urethra and dissect it with correct margins. Tissue around the gland is also changed by radiation, damaged and heals very slow after surgery. There is more damage to the urethra and nerves and incontinence and ED are more pronounced than it is after regular RP.
If there is another way to treat it, it would be much better option. Luckily it seems that there are additional ways of how to approach this problem 🍀.
Question: "Group 4 plus 4" Does this mean Gleason score 4 plus 4 post biopsy? If so, then the cancer has returned and the subjective examination of the tissue and cells indicates definitively the cancer has either returned or was not targeted for proton radiation initially.
I had proton radiation therapy for 2.5 months, weekdays at Loma Linda Hospital, one of the pioneers of proton radiation therapy, commencing in March of 2010. From what I understand at that time, repeated daily proton radiation in small doses minimized damage to the surrounding tissue as compared to a high dose in a shorter amount of time. At the time, my knowledge was minimal, but over the last 15 years, the knowledge index has gone up through reading, research and sites like this. Now comes 2025, and my PSA is rising somewhat. A PET scan and MRI have not validated the return of the cancer. I have yet to be recommended for a biopsy. At present, I am in the active surveillance mode. My initial diagnosis was PSA: 6.47; Gleason 3 plus 3. RH/Florida
Hi westernflyer,
My Gleason score was 4+4, which in the newer categorization puts me in Grade Group 4, high-risk. Your post-proton track is somewhat similar to mine—earlier PSMA/PET and biopsy found only 3 + 3 in just 5% of 1 of 14 core samples, so I was put on surveilance, too. About 10 months later, and gradually rising PSA, I am in trouble. All I can say is discuss with your doctor how frequently to check your PSA levels or schedule scans to stay on top of this, and best of luck.
@northoftheborder Out of fairness, I should add that the (unproven) allegations are about ego, bullying, and clouded judgement, *not* incompetence. AFAIK, no one is challenging Dr Epstein's obvious skill and experience.