New to Reluctant Brotherhood

capecodder
capecodder Member Posts: 8 Member
in Prostate Cancer #1

Thanks to this great forum as I am learning lots about things I wish I never had to learn. 65-yr old living with my wife on Cape Cod. I am recently diagnosed with 7 of 15 cores malignant, (6 cores 3+3 and one 4+3 at target lesion found on MRI, plus two cores list “High-grade PIN”), in left mid core “Perineural invasion is present.” PSA 1.97, digital rectal exam found small nodule, which led to MRI and biopsy. I have long history of BPH. Father had PCa late 60 years old, treated with the “seeds”, died of metastatic cancer at 89, so not so sure about seed treatment. Decipher test ordered but no results yet.

With Dana Farber Cancer Institute (DFCI- a top Center of Excellence) 90 minutes away in Boston, I have scheduled appointments there with an oncologist, radiation doctor, and a surgeon over next 45+ days. DFCI just did a second reading of biopsy slides and came back with same six 3+3 scores and the following at target area: “TARGET LT POST LAT:PROSTATIC ADENOCARCINOMA, focus too small for precise Gleason grading, see NOTE. No perineural invasion. NOTE: The focus is too small for precise Gleason grading. No definitive component of pattern 4 identified.”

In an initial discussion with Dana Farber oncologist, he said he feels I am between Grade Group 1 and 3, but basically low risk at this point.

Am reading Dr. Patrick Walsh’s book as recommended- very helpful. Starting to learn about possible treatments and want to consider all, including focal (watching swl1956’s posts) ablation, and proton radiation.

Have not told my son or daughter yet, or any other family members (other than my wife who was with me for biopsy results). I am a Christian who tries to trust God’s plan, and would welcome prayers from others so want to share with other Christians and friends, but not sure if I want my PCa to be public knowledge yet. I think I will wait until all 3 meetings with the Dana Farber doctors are complete and I have a better idea of treatment plan before sharing with family and close friends. Any advice from this group on how and when to tell family members is welcome. Also, any thoughts on how many others to let know is appreciated.

Thankful for this forum!

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,229 Member
    #2

    Hi,

    Sounds like you are going down the right path meeting with your team of doctors. In my humble non medical opinion the PNI is nothing to mess with. Once the cancer leaves the Prostate its a different ball game. It’s totally up to you and your family to inform who ever you wish. I just told a limited number of close family and friends. Good luck in the next few weeks, study and decide whats makes sense to you. I have included a link for you to study.

    https://www.cancer.org/cancer/managing-cancer/treatment-types.html

    Dave 3+4

  • capecodder
    capecodder Member Posts: 8 Member
    #3

    thanks @Clevelandguy!

  • VascodaGama
    VascodaGama Member Posts: 3,717 Member
    #4

    Capecodder,

    Welcome to the board.

    I also think that you are doing well in consulting various PCa specialists to reach to a decision in a therapy of your choice. In any case, you shouldn't discard brachytherapy just because it didn't well in father's case. PCa cases maybe similar but never equal.

    Thought you had BPH, your PSA seems lower at 1.97 ng/ml to have it into consideration/significance in the cancer issue. Gleason rate 3 is the lowest but 7 positive cores (out of 15) clarify the case as voluminous.

    In your shoes I would do a 68Ga-PSMA PET exam before meeting all those doctors.

    Best wishes in this journey.

    VG

  • capecodder
    capecodder Member Posts: 8 Member
    #5

    Thank you @VascodaGama. What is the 68Ga-PSMA PET exam?

  • Marlon
    Marlon Member Posts: 137 Member
    #6

    I didnt tell anyone other than my wife until I had the biopsy results and was making a decision. Then it was only trusted family members and a couple of friends who had dealt with it too. Even now post-surgery, only a few other friends know. What I found is that very few people know anything about prostate cancer, and so telling some people was making them uncomfortable.

    Your age is a factor in determining which treatment options are feasible. But mostly, it's the cancer itself that determines what will be needed.

  • capecodder
    capecodder Member Posts: 8 Member
    #7

    Thanks @Marlon!

  • VascodaGama
    VascodaGama Member Posts: 3,717 Member
    #8
    https://csn.cancer.org/discussion/comment/1720162#Comment_1720162

    PSMA PET exams became essential imaginary tools after the positive diagnosis of PCa to add info on the extention of the illness. It helps in judging possible existance of extraprostatic extention or far metastases which would rule out treatments for contained cases.

    In USA, there are several types of PET exames being the 68Ga-PSMA and the F18 Pylarify PSMA the best in PCa detection.

    You can Google the terms for details.

    Best wishes

    VG

  • Old Salt
    Old Salt Member Posts: 1,547 Member
    #9

    Trust Dana 😀

  • capecodder
    capecodder Member Posts: 8 Member
    #10

    @Old Salt, Dana is listed as a top Center of Excellence, so I will trust the docs there! Thanks

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