3 + 4 Gleason 7, PSA 5.8, Exo dx 35- leaning cyberknife no lupron

grattman
grattman Member Posts: 6 Member
edited January 1 in Prostate Cancer #1

I am 66 and healthy. After biopsy I am {3 + 4 Gleason 7, PSA 5.8, Exo dx 35}

2 of 14 core samples showed cancer, one 3 + 3 Gleason 6 and the other as above.

Core abutment with no bulging, nothing outside Prostate

I had a CT and no lymph nodes of increase size. My prostate is not enlarged and no abnormal digital exam.

I am leaning toward cyberknife, but I DO NOT WANT TO TAKE CHEMICAL CASTRATING LUPRON.

Has anyone gone with cyberknife and declined Lupron? Why not monitor PSA and initiate Lupron if need be. Lupron does not treat but suspends growth of ademocarcinoma.

Any Lupron denying Cyberknife men out there? Physicians will never advise to go against the standard of care, I am willing to take a minimal educated risk.

Comments

  • Josephg
    Josephg Member Posts: 460 Member
    #2

    "Has anyone gone with cyberknife and declined Lupron? Why not monitor PSA and initiate Lupron if need be. Lupron does not treat but suspends growth of ademocarcinoma."

    The answer is simple. The combination therapy wields significantly better results in either possibly contributing to a cure, or more likely in increasing the time period until the next recurrence.

    The choice is yours, and I'm sure that you aren't the first to prefer no hormone therapy. I can't say that I've heard of anyone on this Forum doing CyberKnife without also doing the hormone therapy, but if there any, they will respond to your question.

  • centralPA
    centralPA Member Posts: 341 Member
    edited December 2023 #3

    It appears that you are Grade Group 2, with a risk level of Favorable Intermediate. This implies you should be good for radiotherapy without any ADT.

    Take a look at the NCCN guidelines and see if you are truly Favorable Intermediate risk. Ask your doctors. If so, the official recommendation is just radiation without ADT.

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #4

    @grattman , I understand your reluctance to be placed on hormone therapy, I suspect because of certain side effects.

    Sorry to be blunt, but you don't WANT hormone therapy, just like the rest of us don't WANT cancer.

    Man up and take your medicine.

  • bdhilton
    bdhilton Member Posts: 866 Member
    #5

    Both times I had Lupron (6 months each) in 2015 for Salvage and 2021 with Cyberknife it was optional. In my cases, (in theory) it made the treatment more affective but based on outcome, it wasnt a value add to me but that doesn't mean it will not be for you...yes, chemical castration affects each of us differently...my medical team (UCSF, UC Davis and Northwestern) has kept me in great health the last 15+years...a lot of it is frame of mind and placing all in perspective...all the best in your journey

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    #6

    Hi,

    I don’t think anyone wants the side effects from Lupron but you could always start it and see whether the side effect's are something you can tolerate because it affects people differently. If it was me I would start and if the side effect's get to severe stop it. Just my humble non medical opinion, and you know what they say about opinions….LOL. You might want to talk with you Oncologist and see how long they want to keep you on the ADT program.

    Dave 3+4

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #7

    @grattman , I'm not here to bully you, I genuinely wish you well, but you need to come clean and explain why you have such a hang-up with hormone therapy. I noticed that you have since started another thread where you implied in an adamant fashion that you will not consider Lupron at all, which is a shift from what you said at the top of this thread where you said that you just don't want it. I'm not sure why you haven't replied in this thread yet.

    I'm going to stick my neck out and make a completely uneducated assumption that there are specific side effects from Lupron or any other chemical castration drug that you are trying to avoid - ED and plummeting libido. If this is true, may I suggest that you should stop thinking with your little head and start thinking with your big one. 😉

    Consider the following scenarios, keeping in mind what has already been suggested to you: "The combination therapy wields significantly better results in either possibly contributing to a cure, or more likely in increasing the time period until the next recurrence."

    So, you have the choice of (a) pushing for Cyberknife alone and possibly having a recurrence a couple of years down the track, in which case you might have no choice but to go on hormone treatment PERMANENTLY then, or (b) following your doctor's advice (he's the one with the degree, after all) and having Cyberknife with adjuvant hormone therapy for 9 months or so now with the expectation that the side effects will then disappear and life will return to normal - with the further expectation that recurrence might then be 10 years down the track.

    Your choice.

  • grattman
    grattman Member Posts: 6 Member
    #8

    I appreciate your thoughts but not the spirit of your reply. You misrepresented my position on Lupron, I was just asking for info. In addition I work in the medical field and am excited about Pylarify and Pluvicto, the first a diagnostic PSMA PET scan, the second an FDA approved targeted therapy that piggy backs a therapeutic radio isotope to kill the cancer cells in nodes and systemically. Please don’t reply to my inquiries, I don’t trust men with your attitude.

    Happy New Year

  • centralPA
    centralPA Member Posts: 341 Member
    #9

    @grattman , what is your risk level? Who told you that you need Lupron? Your doctor?

  • grattman
    grattman Member Posts: 6 Member
    edited December 2023 #10

    Had one core 3+4 (7) one a Gleason 6

    Just consulted with my Urologist,

    He is an eminent Uro, (Dr. Vincent Lanteri) helped develop the DaVinci, he is not comfortable with The Cyberknife in my situation.

    There is a problem outside the prostate situation. They found that I am on the verge of a colovesical fistula. (Had cystoscope today) So they can’t do prostate surgery until I get a resection of my colon. Dr. Lanteri is like family, my cousin through marriage’s brother.

    I have a bone scan Thursday, with visit next week. My CT showed clean nodes. I think I am done with trying to be my own Doctor. Too much information and varying opinions.

    Thanks to you and all the gracious brethren. “On-a- journey” slapped me and I am not even a week post biopsy report. I got thick skin, but the dude irked me with his arrogant posture.

    Joyful New Year

    Gary

    My Lord Jesus Christ is in Control”

    I am ready for whatever…

  • centralPA
    centralPA Member Posts: 341 Member
    #11

    Based on the minimal info, it sure seems like active surveillance is possible. Just closely monitor it, especially while you deal with the alligators closer to the boat.

    I am curious if you look at the NCCN guidelines, what risk level you come back at. I wonder if you aren’t in the range of AS.

    https://www.nccn.org/patients/guidelines/content/PDF/prostate-early-patient.pdf

    You started three new threads in so many days, in each highlighting your abhorrence of Lupron. That’s not a normal posting pattern. @On_A_Journey was looking for the deeper reasoning. Frankly, I was wondering too.

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    edited December 2023 #12

    @grattman ,

    There is plenty of anecdotal and scientific evidence, some of which have been made aware to you here, that the combination of hormone therapy and cyberknife will, in all expectation, yield a far better result in the long term. Heed the experiences of others and don't hide behind your piousness to dismiss the science!

    Your quest for info, and your expectation of receiving it, is respected. But it is hypocritical of you that that in my quest for info about your reasons for not wanting to take Lupron, you have given me and everyone else here short shrift.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #13

    Please let's cool down a bit (directed at the two of you).

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