Cancer found in Lymph and tissue afer DaVinci surgery

Hi, my name is Jack i am 53yr i am four weeks post operation
my pathology report shows some positive tisue and lymph involvement
i am waiting for six weeks to pass to get blood PSA to establish a baseline
I already know my doctor wants to go with Lupron, this scares the hell out of me
i need to talk to guys who have been down this road before me to help me cope
please contact me, i live in SoCal.
right now i feel good, i can cope with my current condition, surgery went O.K.
but now faced with more treatment that will effect my mind, libido,sex etccc..
this is almost too much to bear, i can have a small erection now and i dont want
to loose what little i have left...
If i go on Lupron will i ever have regular sex again?
i am not interested in implants and extream measures like that...
i dont mind a pil and a pump once in a while, but thats as far as i want to go.
If i go on lupron will the effects of chemical castration be reversable
once i stop?

jack
please contact me.

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Risk of Recurrence
    Jack

    Welcome to the board. Do not be anxious. Lupron will do well and it will not “kill” the sex portion left on you. You may experience lesser libido but the “romance” will be there probably with a newer aspect. The best of hormonal drugs is that their side effects end once we stop taken them and all (or almost all) returns to previous status. ED is a typical side effect from surgery, but your case is of the group of the lucky ones. I recall how happy I was post surgery when I managed to get it “right” at the 3-4 o’clock pointed direction. I was 50 years old.

    Wait for the conclusive diagnosis from your doctor after receiving the results of PSA and try to investigate details on the action of salvage treatments to care for your metastases. Use a net search engine and type; “salvage treatments for metastatic prostate cancer after surgery”.
    The “positive tissue and lymph” nodes involvement indicates that you are at high risk for recurrence.
    What was your previous PSA and Gleason score?

    Wishing you a continuous good recovery.
    VGama
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Risk of Recurrence
    abaixo
  • hunter49
    hunter49 Member Posts: 240 Member
    Don't freak. Many people
    Don't freak. Many people have had those readings and have had no re-occurence 12 and 15 years later. What was you gleason and number of core sample posative? Could your doctor feel it during a DRE and what % of cores?
  • mrspjd
    mrspjd Member Posts: 694 Member
    ADT and So Cal
    Jack,

    Welcome to the forum. Sorry to read that your post-op path report identified ECE (extra capsular extension) to the local lymph node(s). While the info you have presented is important and of concern, it is very limited since your pre tx PCa history and add’l details of your post op path report are missing and critical to understanding your case, for you as well as anyone attempting to provide advice or share experiences on this forum, even if your only goal here is to obtain info about ADT (aka hormones/androgen deprivation therapy)side effects.

    It is recommended that you obtain copies of any tests, pre and post-op pathology reports and meeting notes from consults you’ve had with doctors re your PCa. The reports are yours. You just need to request them from your doctors and be familiar with the info in those reports.

    You are wise to thoroughly research ADT (or any primary or salvage PCa tx) prior to agreeing to beginning a tx protocol. There is much to learn about the different ADT drugs, drug combinations, wide range and intensity of side effects, and “prophylactic” type drugs, such as statins and bisphosphonates, which are often prescribed with ADT to mitigate possible heart/bone health issues, especially when ADT is used continuously for extended periods of time.

    IMO, there is a lot of misinformation about ADT out there, not only from well-intentioned patients, but from medical professionals as well. This is why it is critical at this point in your PCa journey, to make a shift from your urologist (who also may have been your surgeon) and obtain a consult from an oncologist specializing in PCa who can discuss the various PCa salvage tx options (such as RT &/or ADT) and determine if/when/how salvage tx should begin. Your first post-op PSA will be an important piece of info for your PCa oncologist.

    Your fears are understandable. IMO, with the exception of a few men posting here about ADT, many of the posts on this PCa forum are from men who have shared horrific stories about their ADT experience, often venting with angry warnings against the use of ADT. While I respect all opinions and understand the need to vent, I believe there are many more men who have tolerated ADT well and benefited from ADT protocols (perhaps this is the silent majority?) than those who have not, especially those cases staged at intermediate or higher risk.

    Since there are many different ADT drugs and drug combinations, in general, ADT affects every man differently, including the range and intensity of side effects; however, newer, intermittent ADT (IADT) protocols are now favored in some cases over older protocols which often called for long term, continuous ADT use. You can read more about IADT here: http://www.pcf.org/site/c.leJRIROrEpH/b.7633981/k.3C11/Intermittent_Androgen_Deprivation.htm

    I would suggest that you try to attend an established face to face PCa networking group (facilitated by an experienced professional) where you can personally meet with and speak to survivors who have been on, or who currently are on, ADT. If you need help finding one, we are familiar with several of the active PCa face to face networking (educational) and support (emotional) groups in the LA and OC areas.

    My husband, PJD, did not elect surgery as his primary tx. He chose a combination of neo-adjuvant txs, including nine months of ADT3 using Lupron, Casodex, & Avodart. All were well tolerated. We are in So Cal. PJD has read your post and asked me to convey that he is open to speaking with you. If you would like to speak with him, please send me an email using the CSN confidential internal email feature (red box on the upper left of the page). Include your phone # & best times/days to call and he will contact you.

    All the best,

    mrs pjd