Nervous Introduction

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  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
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    A lousy update

    Not sure if it's appropriate to keep appending to this thread, but by way of update:  Ive now met with the Uro and MO at Dana-Farber, both of whom I liked and felt comfortable with--but the real and unwelcome development is that the bone scan and the CT scan each showed suspicious bone lesions on different sides of my pelvis. In other words, their findings didn't overlap or corroborate at all. So an Axumin PET scan is now scheduled next week as a tie-breaker.  Definitely was not expecting these scans to show anything. So now the research efforts intensify, in a different direction.  [ETA:  the pathology read of the biopsy slides by Dana Farber was pretty consistent with the initial read--4+3 with a lot of 4, and PNI evident.]

    Thread

    Hello, it's your thread, use it as you see fit.  But in general, it is wise to keep stuff as organized and together as possible, at least early on, as you learn more and mre about your initial diagnosis (which you are still in the process of gathering).  This Board does NOT contain a convenient or logical search mechanism, and things posted at random later on in essence become lost forever to the reading public.  Some guys do copy and past their former stuff together is one way to make things a bit easier.

    PCa tumors outside the gland are often tiny, too tiny for most scans to detect.  This probably accounts for the disparity within your scan results.  Almost always, postitive, confirmed metastasis to the bone (which you do not currently have proof of) indicates substantial advancement.

    Clinically, your case is still capable of curative intent as regards first-line treatment.   You were wise and correctly guided a time back when first treatment moved away from surgery to radiation therapy, possibly with or withiout HT.   It is necessary to have a world-class M.O. in these decisions; do not use 'local talent,' who 'does PCa,' along with every other cancer known to science.   Remain positive in mind and spirit, continuing to learn and drvie your own course here.

    max

  • Hellostone
    Hellostone Member Posts: 22
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    Gentlemen, thanks again and

    Gentlemen, thanks again and always. I will update with the Pet scan results. And while I may yet change the name of the thread (Max, great point about the site's lack of a robust search option), I'm not going to do so yet, as the title still seems strangely apt. With the recent inconclusive scans and the pending Pet scan, I find myself in mental territory like I was a month ago when the Dx was new and most everything unknown. 

    joseph, glad to learn you're a fellow DFCI guy. Perhaps we should get forum name tee shirts made so we can identify each other in the 11th floor waiting room?? (unrelatedly, I am going to MGH to meet with MO and RO for additional opinions once the scans are done. Feels like I'm cheating on Dana...)

  • Hellostone
    Hellostone Member Posts: 22
    edited March 2020 #44
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    Another Update

    Glad the CSN board is back up, and thanks to those who made that happen. 

    Update:  Axumin PET scan came back negative, meaning clear, meaning some good news, thankfully!  So now both mpMRI and PET scan both indicate the horse remains inside the barn (though I know there could be micro mets outside the gland that no scan could show). 

    Accordingly, am back to the fundamental primary treatment decision -- and have decided on surgery after many weeks of research and consults with multiple docs at Dana Farber and MGH. Now deciding between robotic and Open RP. Will meet with Francis McGovern, an oft recommended open surgeon at MGH soon.  Comments welcome!

    My sincere thanks, and I'm sure I'll be back soon with more questions!

  • Josephg
    Josephg Member Posts: 385 Member
    edited March 2020 #45
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    Another Update

    Glad the CSN board is back up, and thanks to those who made that happen. 

    Update:  Axumin PET scan came back negative, meaning clear, meaning some good news, thankfully!  So now both mpMRI and PET scan both indicate the horse remains inside the barn (though I know there could be micro mets outside the gland that no scan could show). 

    Accordingly, am back to the fundamental primary treatment decision -- and have decided on surgery after many weeks of research and consults with multiple docs at Dana Farber and MGH. Now deciding between robotic and Open RP. Will meet with Francis McGovern, an oft recommended open surgeon at MGH soon.  Comments welcome!

    My sincere thanks, and I'm sure I'll be back soon with more questions!

    Another Update

    Great news, Hello!

    I'm glad to read that you have been able to come to a decision regarding your treatment, based upon the latest and already accumulated information.  You've made your decision, and now own it.

    I wish you the best of outcomes on your treatment selection, as well as on your overall PCa journey.

  • VascodaGama
    VascodaGama Member Posts: 3,647 Member
    edited April 2020 #46
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    Invasive cribriform carcinoma is present

    Stone,

    I am pleased to know that you are alive and kicking. I wish you total recuperation from the RP and that the success is demonstrated soon.

    Sorry for posting my comment on the pathologist’s report (Invasive cribriform carcinoma is present) in this your initial thread because it includes our exchanged opinions and data since your diagnosis that may influence the way we judge it. You posted this;

    “I've already received the pathology results and was greatly cheered to learn there were negative margins and no EPE or SVI. I remained scored as G4+3 with plenty of pattern 4 (i.e., 90%), pT2 N0.  That seemed about the best news I could get at this point.
    However, there was this additional note on the report: Invasive cribriform carcinoma is present.
    How meaningfully adverse is that finding?”

    The “cribriform” finding indicated by the pathologist regards the possibility in having recurrence later but it doesn’t mean that you are diagnosed now with metastases. This indication was provide for your urologist to judge your status and provide a pathological stage. In your case he believes it to be pT2 N0. However, he did not include the third item of “MX” that regards findings from previous image exams (MRI, CT, Bs and PET) which were inconclusive for existing far metastases. I think that the ambiguous results of the CT and BS exams on bone lesions and the negative results from the MRI and PET made him to consider your case as contained (pT2). In any case he should have indicated his opinion inserting a third classification of M0, M1 or MX. The cribriform finding may have lead to MX.

    I agree with Clevelandguy opinion that each case is different and that you should follow up the results with periodical PSA tests. The PSA should indicate remission (levels below <0.05 ng/ml) and stay there forever. The negative margins, negative SVI, negative EPE and negative lymph nodes leads to believe that your had a successful RP. Congratulations.

    Please let us know about your experience in regards to the side effects.

    Best Wishes.

    VGama

     

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
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    I have been told cribriform

    I have been told cribriform is a diagnostic marker for a G4 grading

  • Hellostone
    Hellostone Member Posts: 22
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    VG and hewhosits, apologies

    VG and hewhosits, apologies for the double thread; I posed my question in a new thread as I figured this one was too stale.  I'll update once I talk with my doc about this, as there doesn't seem to be a lot of cribriform postings here (at least that I could find).

    Meanwhile, just looking forward to losing this Gucci (catheter) bag in a few days!  Thankfully, its been a smooth recovery from surgery so far. We'll see how the side effects are soon enough. Thanks!