5+4=9

CBHowry
CBHowry Member Posts: 6
edited May 2018 in Prostate Cancer #1

My post-op pathology indicated 5+4 Gleason score. (Surgery on 2/12/2018) I have stage T3b and positive magins. I also have Perineural Invasion. My pre-op PSA was 8.0 and after RP is 0.1. I've been reading a lot online and most info seems outdated. However 9 + T3b + PM + Perinueral Invasion seems to equal that I am at very high risk of met or recurrence. I'm scared. Theres no one I can talk to. My husband is in denial of the facts. I'm trying to maintain a positive attitude but its hard with all the negative info about my test results.

 

My surgeon neglected to tell me about the positive margin, my oncologist told me. What else isn't my surgeon telling me? I start radiation on 5/30/2018, why aren't they giving me ADT too?

 

Comments

  • RobLee
    RobLee Member Posts: 269 Member
    Of course you are scared

    Of course you are scared, that is only natural.  Cancer is the loneliest place on earth.  One never knows what will happen, yet you must make potentially life changing decisions with very little information.  Physicians by necessity must remain detached and provide little if any emotional support.  And cencer is also very hard on the patient's loved ones and especially if one is a caregiver.  In the event of an end stage diagnosis, which one will be left alone, grieving? 

    I might suggest that you avail yourself of one of the other CSN resources.  Start a blog on your "My CSN Space" about me page, on the left, or join some of us in the chatroom (off and on during the daytime, but becomes very busy around 10PM eastern time). No one understands what it's like to have cancer better than others who have or have had it. There are a couple other chat regulars with PCa and the crowd encompasses a variety of lifestyles and various types of cancer at different stages.

    Regarding your treatment, none of us here can really offer any advice or recommendations.  I had surgery, radiation and am still on HT.  Your prognosis sounds worse than mine was, so I can only guess that your RO or oncologist wishes to spare you some uncomfortable side effects, or perhaps suspects that HT might mask the progress of your treatment.  You are still looking for the most effective treatment, and throwing too many into the mix may obscure what is working and what is not.

    I wish you good luck going forward.  There are still many options beyond RP and RT, though those are the first line of attack. It ain't over til it's over, and every case is different.

  • Clevelandguy
    Clevelandguy Member Posts: 1,162 Member
    More info needed?

    Hi CBhowry,

    Sounds like radation would be a viable option with what you have described here.   Looks like they are throwing multiple weapons at it(ADT + radiation) to get it under control.  What kind of radiation are they going for?  How many post PSA tests have you had, are you showing an upward or downward trend?  A .1 post surgery PSA is a lot better than say a 2 or 3!  Do they know where the escaped cancer is located in your body?

    Dave 3+4

  • contento
    contento Member Posts: 75
    CB, given the info you

    CB, given the info you provided a .1 ng/ml psa reading after RP is not a good reading. If the reading is confirmed it sounds like some cancer may have been left behind.

    If it's in the pelvic area it can potentially be " cured " ( that's a real tough word to use ) with radiation. If it has spread to distant locations then most likely hormones would be used to control the cancer.

    I also was a stage 3 gleason 8 and although my surgery was successful I did have a reoccurance after about 18 months . I subsequently had radiation treatment w/hormones . That was over 2 years and so far everything is going well.

    Hope all goes well for you also.

    Good Luck-- contento

  • RobLee
    RobLee Member Posts: 269 Member
    CBHowry said:

    I have had no post surgery

    I have had post surgery PSA tests (0.01). They will do scans to see if it spread outside the prostate area (where it used to be). 

    My pre-op PSA was 7.1 and after RP is 0.1.

    At least that's what you said in your original post.  That's what's throwing everyone off.

  • Grinder
    Grinder Member Posts: 487 Member
    edited May 2018 #6
    Your partner

    This should be a wake up call for your partner as well to get tested. I am assuming if he is approximate to your age he has been checked out, because detecting PC in early stages and tracking its development is the best key for successful treatment.

    Reiterating what the guys above said, Androgen Deprivation Therapy is used primarily to supress the activity of cancerous prostate cells, not kill them. Cancerous prostate cells are prostate cells with mutated DNA, and so they do not behave as normal prostate cells. Androgens in your testosterone and other male hormones trigger a response in prostate cells to activate, and that is all part of the reproduction process in humans, since the prostate is an important part of the reproductive system.

    So depriving prostate cells of androgen is meant to keep them dormant, and hopefully the immune system can deal with them, or they may eventually atrophy. But keeping them dormant makes it harder to detect them and locate them to kill them with intervention treatments if your immune system fails to kill them. So ADT is used or not used, depending on what treatment program your doctor is prescribing.

     

     

  • Grinder
    Grinder Member Posts: 487 Member
    helpful diagram

    trying to bring up a copyright free diagram of the role of androgen in the prostste cell.

    androgen

  • CBHowry
    CBHowry Member Posts: 6

    More info needed?

    Hi CBhowry,

    Sounds like radation would be a viable option with what you have described here.   Looks like they are throwing multiple weapons at it(ADT + radiation) to get it under control.  What kind of radiation are they going for?  How many post PSA tests have you had, are you showing an upward or downward trend?  A .1 post surgery PSA is a lot better than say a 2 or 3!  Do they know where the escaped cancer is located in your body?

    Dave 3+4

    I have had no post surgery

    I have had post surgery PSA tests (0.01). They will do scans to see if it spread outside the prostate area (where it used to be). 

  • Jerry Mac
    Jerry Mac Member Posts: 21
    PSA

     CB, was your PSA 0.01 or 0.1? Your first post stated 0.1 and the second one 0.01. If your PSA is 0.01, that's great.