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Thanks, appreciate your reasoned response. in the case of an EPE, not quite sure how the surgeon identifies cancerous vs. non-cancerous tissue, and how they can be reasonably sure they got it all. But I know he scraped away a lot (75% ish) of the nerve bundle on the cancerous side. I assume the surgeon makes a "best efforts" basis but there are no guarantees. Can you confirm I am on the right track?
Second follow up - Do negative margins even matter if you have an EPE? I always thought negative margins meant you had no EPEs! From your response, it appears it only means there are no cancer cells near the edges of the prostate. if I understand correctly, i have a lot of cancerous cells (i.e non-focal) further away from the (former) prostate, just not any that were close to the edge. Any light you can shed on this is appreciated.
I understand that PSA is next, but with IDC and a 98 Decipher, i feel like i have a ticking time bomb in my gut. I am all in on any and all aggressive solutions.
It a bit shocking how much information I have to dig up on my own. Love the Connect as a reliable info source. have been frustrated throughout this process by the lack of concern and honest discussions on the IDC and Decipher. Doesnt appear to be a lot of clinical studies on IDC treatment, just retrospective info.
Outside of that, recovery is proceeding well. Catheter comes out today and feeling pretty good all things considered. i was in pretty good shape going in, so i think that helps.
Replies to "Thanks, appreciate your reasoned response. in the case of an EPE, not quite sure how the..."
Acknowledging the IDC and .98 Decipher results, it is clear that aggressive treatments will be recommended by your medical team and these next steps will depend greatly on your PSA test results that will follow.
As @jeffmarc stated, there are other blood tests, such as PSE, that can detect the presence of PCa cancer cells more accurately and those should be discussed with your medical team.
However, without a prostate, given your RP pathology results, I would expect your first post RP reading at 6 weeks and then another in 6 weeks. The second test result provides you with a direction for both the PSA and, if required, the next treatment. Ideally, your first post RP PSA result is < 0.1. If not, your second PSA test provides more information that will be used for any further treatment.
First follow up: you are on the right track. More information needs to come from your surgeon with the acknowledgement that his decision to “scrape away” nerve bundles on one side indicated that the surgeon expected or anticipated a high probability of cancer in the nerve bundles. In my opinion, only your surgeon will be able to give you clarity on the pathology report statements of both negative margins and non focal EPE, along with his decision to affect the nerve bundles on one side.
Second follow up: you are correct. Non-focal EPE signifies a greater tumor volume beyond the prostate's boundaries relative to focal EPE.
In addition to taking care of yourself, you can prepare for your next meeting with your surgeon and any other members of your medical team to discuss (1) a review of all known information such that you fully understand answers to all of your questions (2) next steps - to include timing of your next two PSA tests, actions if first PSA greater than 0.1 (you can find this discussion and associated questions to ask your medication on both PCRI.org and PCF.org under the topic of “Post RP rising PSA.”
If an additional treatment is needed, the members of this forum can help with best practices and questions to ask your medical team. Including your medical member types.
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EPE can be identified during radical prostatectomy or sometimes preoperatively through imaging like MRI. That is how it can be removed during surgery. The clean margins showed that they did get everything that was there at the time.
If it is In your bloodstream you want to be on Something like ADT to prevent it from growing. Has the doctor mentioned you need to take ADT?
The presence of EPE can influence treatment decisions, potentially leading to recommendations for radiation therapy (following surgery). In your case with the clean margins, ask your doctor if that is necessary. Depending on the state of the EPE, it is possible it got into the bloodstream. You can do something like a PSE Test to see if cancer is actually in the bloodstream. You could ask your doctor about this test.
This was posted by an Episwitch representative
Just to clarify, the EpiSwitch PSE test analyses immune cells in the blood that have been at interplay with prostate cancer (or not). Your PSA value only makes up a small portion of the results of the test. There are other very informative biomarkers assessing the presence or absence of PCa included in this test. So yes, EpiSwitch PSE can still be used with a very low PSA score, and can still detect prostate cancer without PSA shedding. Therefore, the test can be used before, after and during treatment - even after complete prostate resection. In your case, a 'low likelihood' result could potentially help you avoid things like PSMA scans if your PSA indeed rises over time. A 'high likelihood' result could be indicative of recurrence, irrespective of low PSA."