RRP followed by PSA Rise

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Comments

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited September 2017 #42
    Final biopsy report

    Hi all

    Got the final letter with the butcher's bill this week.

    • Robotic assisted radical prostatectomy with unilateral right sided nerve sparing and bilateral extended pelivic lymph node dissection for primary pattern for Gleason 7 prostate adenocarcinoma
    • Gleason 4 + 3 (50% mucinous subtype) Pt2c specimen
    • 7 negative lymph nodes
    • Negative surgical margins
    • Organ confined
    • Tumour volume 3% of total
    • PSA 0.05

    It all makes for good reading but I am a bit annoyed at the consultant when he said over the phone "there as a lot of tumour" when he gave the informal brief. Am I missing something or is 3% a lot of tumour or was he being dramatic?

    I have researched the various subtypes and it seems I am a special snowflake with the mucinous subtype as it is rare and some think it is more aggressive and harder to treat but more recent research suggests otherwise. Since I am organ confined I am not too worried.

    Also Pt2c implies both lobes involved but at only 3% I assume that the cells are scattered rather than being one big mass?

    Finally no mention of the seminal vesicles that were removed - do they come under the lymph nodes or are they just being ignored because they are clear?

    Any advice gratefully received.

    Cheers

    C

  • VascodaGama
    VascodaGama Member Posts: 3,526 Member
    pT3bN0 for seminal vesicles invasion

    A simple note on your query; If invasion of seminal vesicles were verified then your pathology stage would be pT3bN0.

    I am sorry for the short answer but I believe that the CSN administration is not satisfied with my comments/posts to the many. They just deleted one entire thread addressed to me resently.

  • Grinder
    Grinder Member Posts: 487 Member
    edited September 2017 #44
    CSN Admin:

    I for one really appreciate the operation of this forum and the effort that goes into running it. But please allow VdG and others the freedom to share knowledge and experiences. We are all quite aware that none of us can make definitive statements regarding diagnoses and prognoses, but we do have the valuable experience of having gone through the same operations, treatments, and procedures. And in VdG's case, intense study and accumulated knowledge that he is willing to share with others, information that is simply not available from urologists and GPs during 15 minute consultations/appointments. 

    At my last consultation, a PA informed me my PSA was undetectable. It lasted but a minute and I was charged $174 for information I could have gotten over the phone. 

    There are some guys on this forum that I vociferously disagree with, but I would certainly not want to censure them... But rather hear what they have to say and will dispute it if necessary.

    So please don't limit access to VdG's and other's information and experiences. 

    Historical note: when King James was assembling his panel of scholars and translators to translate what has become known as the KJ V Bible, he brought in scholars from many different backgrounds and religious persuasions... Why? Because they kept a sharp eye on each other not to let the other guy's denominational bias to infiltrate the stark, obvious meaning of each verse. So now, (though perhaps difficult to read for a modern audience), it is the least tainted with bias, and has the simplest most accurate meaning possible verse by verse.

    This forum is similar in that we can keep an eye on each other, and if we collectively disagree with something posted, we will make it known. We have all disparate experiences that we need to share with others, and we can dispute what we recognize to be inaccurate and arrive at appropriate conclusions. Generally I find we do agree mostly.

  • contento
    contento Member Posts: 75
    Couldn't agree more

    Grinder, well said ! I couldn't agree more. Censorship  is not the answer to those trying their best to help and support each other with our experience and knowledge. Yes I think we are all aware that we are not doctors and our opinions are just that "opinions". Let us speak our minds and we'll separate the chaff from the wheat.

  • Old Salt
    Old Salt Member Posts: 952 Member

    pT3bN0 for seminal vesicles invasion

    A simple note on your query; If invasion of seminal vesicles were verified then your pathology stage would be pT3bN0.

    I am sorry for the short answer but I believe that the CSN administration is not satisfied with my comments/posts to the many. They just deleted one entire thread addressed to me resently.

    Seminal vesicles invasion?

    I don't think the report states that seminal vesicles were invaded. And, as I read backwards, the July 17 post of Cushions states 'no vesicle invasion'. Good!

  • FinishingGrace
    FinishingGrace Member Posts: 82

    pT3bN0 for seminal vesicles invasion

    A simple note on your query; If invasion of seminal vesicles were verified then your pathology stage would be pT3bN0.

    I am sorry for the short answer but I believe that the CSN administration is not satisfied with my comments/posts to the many. They just deleted one entire thread addressed to me resently.

    Unfortunate

    The deletion of any thread that is faithful to the sharing of experiences and information is a great loss to this entire community. I hope you aren't discouraged Vasco as your input is greatly valued by many. Please continue to share your knowledge.

  • CSN_Simone
    CSN_Simone moderator Posts: 61

    pT3bN0 for seminal vesicles invasion

    A simple note on your query; If invasion of seminal vesicles were verified then your pathology stage would be pT3bN0.

    I am sorry for the short answer but I believe that the CSN administration is not satisfied with my comments/posts to the many. They just deleted one entire thread addressed to me resently.

    Hi Vasco, 

    Hi Vasco, 

     

    If you can let me know the author of the thread via the 'Contact Us' form we can research it further, but I can let you know that we do not delete threads in general as we are then deleting many members' contributions. Many times members will edit out their own threads or ask us to remove them. We do sometimes remove threads if they are in direct violation of the Terms and Conditions. The most common violation of this is the 'medical advice' clause I've shared below. As you guys know, it is a fine line between sharing your own experience and providing direct medical advice towards someone else's unique situation. We always appreicate everything that our members bring to these boards and the site in general, but we do also have to enforce the Terms and Conditions that allow the site to exist. If you ever have any questions, please reach out to us here as we are always happy to help.

     

    Best Regards,

     

    Simone

    CSN Support Team

     

    "No User shall advise other Users about medical care or attempt to influence their medical care decisions. Medical advice to others is strictly prohibited, regardless of a Member's medical education, credentials, or experience."

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited September 2017 #49
    I too appreciate VDG and his

    I too appreciate VDG and his sterling efforts and advice. He provides a sound perspective and nothing that cannot be verified by some research.

    Credit to Simone for responding and the admins deserve sympathy in that they are non specialists who I am sure want to do a good job but can't put the time in to verify stuff and need to prevent liability.

    That being said, this is a forum for people with complex medical conditions and if people cannot share medical advice here, then what is the point? Reddit has a good middle ground in that trusted members can be flaired to show that they have been looked at and they know what they are talking about. That would help here.

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited September 2017 #50
    Old Salt said:

    Seminal vesicles invasion?

    I don't think the report states that seminal vesicles were invaded. And, as I read backwards, the July 17 post of Cushions states 'no vesicle invasion'. Good!

    Hi Salty

    Hi Salty

    Yes it was T2c - no invasion of the vesicles but it is an annoying no win situation in that my chitlins had to be chopped out to prove it but could have stayed in. No porn career for me :(:):)

  • Old Salt
    Old Salt Member Posts: 952 Member
    edited September 2017 #51

    Hi Vasco, 

    Hi Vasco, 

     

    If you can let me know the author of the thread via the 'Contact Us' form we can research it further, but I can let you know that we do not delete threads in general as we are then deleting many members' contributions. Many times members will edit out their own threads or ask us to remove them. We do sometimes remove threads if they are in direct violation of the Terms and Conditions. The most common violation of this is the 'medical advice' clause I've shared below. As you guys know, it is a fine line between sharing your own experience and providing direct medical advice towards someone else's unique situation. We always appreicate everything that our members bring to these boards and the site in general, but we do also have to enforce the Terms and Conditions that allow the site to exist. If you ever have any questions, please reach out to us here as we are always happy to help.

     

    Best Regards,

     

    Simone

    CSN Support Team

     

    "No User shall advise other Users about medical care or attempt to influence their medical care decisions. Medical advice to others is strictly prohibited, regardless of a Member's medical education, credentials, or experience."

    What is the ACS afraid of?

    The lawyers appear to rule the Forum, not common sense...

    Cry

  • Will Doran
    Will Doran Member Posts: 207
    edited September 2017 #52
    Going Commando

    Cushions,

    Congratulations on the news.  Yes, waiting for PSA Test results is the hardest thing. Mine went down to <0.010 and stayed there until a year ago.  Now that my testosterone is back up to normal my PSA has come up but is still less than 1.0.  By your next test I'll bet your PSA will be even lower and you will be a "Happier Bunny".  I'm coming up on all that in two weeks.  Then have appointments with my surgeon/urologist, My new chemo doctor, and also my dermatologist for my melanoma checkup.  I have had 14 melanomas removed since my Prostate Cancer diagnosis.  Had Melanoma over 15 years ago, and then it came back during my Prostate Cancer recovery and treatments.  You may want to talk to your doctors and see if you should be checked for melanoma.  I was to a specialist in Hershey, PA who is working on Melanoma as it is related to other types of solid tumor cancers.  I am checked every 3 months.  The last year, I have been free of melanoma, again.  Of course I am a blond haired, blue eye guy of German background (all sides of the family), raised on a farm and out in the sun all the time.  

    I had told you that I had some leaking problems when I lifted weights and got off my indoor spinner bike.  As of Last week, that has all stopped.  I have had no leaks for almost two weeks.  It will be 4 years next week since I wasd diagnosed.  I'm very happy right now.  I am back to "going commando".  Hadn't worn underwear since I was in Jr. High.  The last almost 4 years have driven me nuts.  I had forgotten how uncomfortable briefs are.  Had to get briefs to hold my "pads".  I'm to the point that even after I shower I 'm not in much of a hurry to get dressed.  I never was before and now I'm back to "my good old self" as my wife says.

    So it takes time, have patience, and things will improve.

    Good Luck

    Love, Peace and God Bless

    Will

  • Will Doran
    Will Doran Member Posts: 207
    Too Much Coffee?

    Cushions,

    I can understand catching "H" for not doing your Kegels,( I still do mine after almost 4 years)  But Too Much Coffee?  I never heard of such a thing.  In fact when I was in the hospital, they gave me coffee with my liquid supper the evening of the surgery. And the next day at  Breakfast & Lunch, I also had coffee. My Urologist/Surgeon also told me that a little Kentucky Bourbon (his favorite) or my beloved Vodka were good three or four times a week.  Just one drink.  As to Coffee, I drink all of that I want.  Doctor said that was fine and helps clean out kidneys and baldder.  I'm coming up on 4 years post diagnosis, and have hardly any control problems.  Just when I lift heavy things, laugh really hard or after I've been on my indoor trainer / spinner bike for like 40 minutes or more and then get off the seat.  Then I do my weights and get back on the bike for another 20 - 30 minutes in the morning.  Then after lunch time back on the bike for another 30 minutes.  I was a road cyclist and really miss being out there, but I was encouraged to keep up with the Spinner Bike.  But other than that, I really have very few leak problems.  Now, I admit this is almost 4 years post diagonis.  So, I'm sure things will settle in for you.  

    DO YOUR KEGELS  Laughing

     

    Take Care. Love, Peace and God Bless

    Will

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Update...

    Update...

    3 months post RP

    PSA test 0.05

    99% continent

    ED about as expected

    I owe my consultant and his colleagues a huge debt of gratitude - I am one of the lucky ones.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Very good

    Glad to read this great news!

    I am happy for you

     

  • VascodaGama
    VascodaGama Member Posts: 3,526 Member

    Great results. Let's celebrate with a glass of Cliff Richard's red. You can find it at your liquor store. I will get a bottle at his cellar neighbor to me.

    Congratulations.

    VG

     

  • contento
    contento Member Posts: 75
    edited October 2017 #57
    Alright !!

    Congrats  Cushions , great result and i'm sure great relief...

  • ramaka
    ramaka Member Posts: 55
    Congrats, Cushion! Very happy

    Congrats, Cushion! Very happy for you and your family!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member

    Great results. Let's celebrate with a glass of Cliff Richard's red. You can find it at your liquor store. I will get a bottle at his cellar neighbor to me.

    Congratulations.

    VG

     

    Cheers !

    To VG's suggestion regarding Cliff Richard's, I say "Dilly Dilly !"

     

    (You would have to know American TV commercials to get this; the current Bud Light piece; a spoof on Game of Thrones)

     

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member

    I too appreciate VDG and his

    I too appreciate VDG and his sterling efforts and advice. He provides a sound perspective and nothing that cannot be verified by some research.

    Credit to Simone for responding and the admins deserve sympathy in that they are non specialists who I am sure want to do a good job but can't put the time in to verify stuff and need to prevent liability.

    That being said, this is a forum for people with complex medical conditions and if people cannot share medical advice here, then what is the point? Reddit has a good middle ground in that trusted members can be flaired to show that they have been looked at and they know what they are talking about. That would help here.

    Yes

    Hewho is correct.

    I estimate that half of every post here is either a request for advice from a patient, or a suggestion from a former patient.

    If every post here that began with a comment like "What I would do...." were deleted, not much would remain.

    I usually cast my thoughts as what I did do, and what resulted, and what I think about it.   A layman saying he would "do x" does not seem to me to be conferring "medical advice." The readers must know better.  ('Medical advice' costs $500 a pop, whereas everything here is free !)

    The position of the Administration also is less than ideal, and it seems they are doing as good a balancing act as possible, given the Rules set for these Boards.

    max

  • Grinder
    Grinder Member Posts: 487 Member
    edited October 2017 #61
    Congrats

    Since you have escaped the "pit of misery", I also say "Dilly Dilly" .