Newly Diagnosed with Gleason Scores of 9 and 10

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  • Gleason Score 9 and 10
    Gleason Score 9 and 10 Member Posts: 66 Member
    #82
    Second PSA Score, 5 months post surgery....Still
    Hi All,
    I hope you are all doing well and finding ways each and every day to enjoy living!
    It has been a while since I have posted, but wanted to give an update on our progress. Just this week, my husband had his second PSA test following surgery in January, and we are thrilled to share that it has remained <0.01ng/mL. Additionally, his incontinence is greatly improved, using only one liner a day. He recently saw a physcial therapist who specializes in incontinence and though my husband felt he was making strides before the appointment, he feels what he learned as exercises/advice has helped a great deal. ED is slowly coming along.  We have a doc appointment this Wednesday so we will address some of those concerns at that time. 
    All, in all, we have been blessed beyond belief for starting this journey with Gleasons 9! Never taking anything for granted and will continue to be proactive in care and follow-up...always! 
    Until next time!
    Janice
     
  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #83
    On this forum, we like

    Good News!

  • Gleason Score 9 and 10
    Gleason Score 9 and 10 Member Posts: 66 Member
    edited June 2017 #84
    Old Salt said:

    On this forum, we like

    Good News!

    It's Important!

    Thanks, Old Salt!

    I agree!  It's important to share the good news too....Thanks for your reply

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    #85
    Cath removal

    Hi,

    My Cath removal was not bad at all.  It did bother me a lot when it was in irritating the tip of my penis.

    For most Cath people the removal is a good to great day.

    Dave 3+4

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #86
    Good news indeed

    Janice,

    Thanks for the update. Yes, you can say that you've been blessed for the accomplishment. Hopefully the incontinence issue also regulates and that you can close this bad chapter of your lives. Best wishes for continued remission.

    VG

  • Gleason Score 9 and 10
    Gleason Score 9 and 10 Member Posts: 66 Member
    #87
    VascodaGama said:

    Good news indeed

    Janice,

    Thanks for the update. Yes, you can say that you've been blessed for the accomplishment. Hopefully the incontinence issue also regulates and that you can close this bad chapter of your lives. Best wishes for continued remission.

    VG

    Thanks!

    Thanks, VG!

    One day at a time...really, one three month section at a time! Truly blessed! I will stay in touch!

    Janice

  • Gleason Score 9 and 10
    Gleason Score 9 and 10 Member Posts: 66 Member
    #88
    Long overdue update

    Hello All!

    I have been meaning to provide a post update for far too long. My apologies for just now getting to it.

    It has been one year and eight months since my husband's prostatectomy, and with regular follow up blood tests, I am thrlled to continue to report that his scores are "undetectable" (<0.01). He was/is an avid believer in following the surgeon's suggestion of doing regular kegel exercises for one year post surgery, and he did them even longer than required. He has 95% continence, only wearning a thin liner when he has a cold due to regulary coughing and or sneezing. Other than than, he no longer wears even a liner.

    We are now to having blood tests every four months, and probably next year, it will move to once every six months if we continue with the same results. 

    As you can all imagine, we are thrilled beyond belief, feeling incredibly blessed to have had such a skilled surgeon, and a whole lot of luck! 

    I hope you are all doing well too and that this update provides hope for others. My husband's case was a serious one, but so far, so good!

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    edited September 2018 #89
    Great news

    Time for another bottle of bubbly!

    Thanks for reporting back.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #90
    Thanks for the update

    Janice,

    I am pleased for the news. I hope it continues that way. The continence issue is just fine. We all drip when in stress.

    This is time for celebration. Where is the bottle?

    Best,

    VG

  • Gleason Score 9 and 10
    Gleason Score 9 and 10 Member Posts: 66 Member
    #91
    VascodaGama said:

    Thanks for the update

    Janice,

    I am pleased for the news. I hope it continues that way. The continence issue is just fine. We all drip when in stress.

    This is time for celebration. Where is the bottle?

    Best,

    VG

    Bubbly

    VG and OS,

    We no longer care how much the bottle of bubbly costs! :) We go for whatever we want! 

     

    Thanks for your continued support! We are so grateful an I am so grateful for all the support I found on this discussion board! 

    Cheers!

    Janice

  • Gleason Score 9 and 10
    Gleason Score 9 and 10 Member Posts: 66 Member
    #92

    January 2022 update…. It’s been too long!

    I am thrilled to share with you all that we just celebrated five years post surgery. My husband’s PSA continues to remain “undetectable”. Since surgery in January 2017, there have been no additional diagnoses.

    I believe I mentioned in a prior update that my husband followed his recommended Keagle exercises exactly. For approximately 18 months he did Keagle exercises two times a day… Even now, he continues though not with any scheduled regularity. As a result, he does not need to wear a pad or a liner daily. The only time he uses a liner is if he has a cold or we are flying… Always erring on the side of caution but the liner is seldom needed. It has been four years since the pad was needed. We don’t even keep them on hand any longer.

    His ED does remain and while that can be a source of minor frustration from time to time, rarely is it an area of focus. Given the original diagnosis, where we stand today, five years later, our blessing is more than anything we could have imagined or hoped for. If the result of all of our good fortune is ED… So be it.

    There is so much stress, anxiety, and fear of the unknown at the time of diagnosis. I am hopeful that others can find the support that I did on this message board and also wanted to spread the signs of hope that do exist in this sometimes ugly world.

    Thank you again for the support. May this update find you all well mentally, physically and emotionally. If you are one in the early stages of diagnosis, don’t lose hope! Fight hard, ask questions, be a fierce but respectful self advocate and never lose hope.

    Janice

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #93

    Thanks for these wonderful news. I am glad to hear about the continued remission. You are a winner.

    I recall Rakendra's comment of 5 years ago. He said;

    " ... I suggest you focus also on the time you have left and make that time the most valuable time of your life together... "

    Best wishes,

    VGama

  • Gleason Score 9 and 10
    Gleason Score 9 and 10 Member Posts: 66 Member
    #94

    Thank you! So many wonderful words of wisdom and support! May goodness & time together be something we all continue to enjoy.

    Janice

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #95

    That's great news.

    I gather that it wasn't necessary to have follow-up radiation?

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #96

    That is brilliant news!!

  • scaredwife
    scaredwife Member Posts: 3 Member
    #97

    after viewing this board i feel hope for my husband

  • scaredwife
    scaredwife Member Posts: 3 Member
    #98

    waiting on ct and mri after biopsy showed significant numbers. we dont have the biopsy results to view

  • scaredwife
    scaredwife Member Posts: 3 Member
    #99

    cancer is present . i just dont know the numbers

  • Gleason Score 9 and 10
    Gleason Score 9 and 10 Member Posts: 66 Member
    #100

    October 2023

    Dear Friends,

    It has been a long time since I have posted and I want to continue to give good news and updates as I am hopeful it provides support and hope for others out there starting their journey with this ugly beast!

    We are nearing seven years since my husband’s diagnosis and all continues to be well! His PSA results continue to be “undetectable” - never did I think we would be in a place where his PSA draws felt routine rather than results we feared.

    My husband is now retired and is living his best life - hiking, backpacking, walking in grasslands, the mountains, and open space nature areas - he tries to make one of these passions happen at least once weekly. Incontinence continues to be a non-issue, outside of a cold that includes lots of coughing. ED is still an issue, but one we have long ago accepted with our focus on the joy of life and accepting what has come.

    I hope this post offers hope to others out there who have turned to this message board for information and support. It was my lifeline for many, many months. I feel so grateful for the doctor we found, the aggressive approach with which he advised us to take, and the hope he instilled in us with his bit of cockiness and cautious optimism.

    Take one day at a time, live each one to the fullest, and always be grateful for the next sunrise.

    Janice

  • centralPA
    centralPA Member Posts: 322 Member
    #101

    Awesome, thanks for updating!

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