Looking for Post-Op Feedback

07SHNNAC7081522
07SHNNAC7081522 Member Posts: 17
edited March 2014 in Prostate Cancer #1
Randy, Erisian, bdhilton, lewvino... to all - What's up CSN fam! I was looking for some feedback. I'm now currently 1 month post op from Da Vinci. I will going for my first PSA 9 Jun. Post diagnosis - initial Gleason 7 (3+4) downgraded to Gleason 6 (3+3), negative seminal vesicle, negative on the lymph nodes...staging went to T2c (organ confined, both lobes)...sounds good to me. Bad stuff (I imagine...)...There was a positive margin...my doctor detailed to me that he thinks that the cancer in the margin represents cancer at the apex of the prostate which was classified as a positive margin. At this point, I'm quasi-concerned...he says not to worry. I'll get more info when I see him on the 9th. I feel pretty good. I still experience incontinence during the day during "more active" activity...i.e., coaching 5 year old soccer players, but can sleep all night without a drop....I get up and empty about 5 am and go back to sleep no problems. Even when I walk "briskly"...which I can do and do everyday ...5K...no drops...I can remain dry. Sometimes I experience a "slight burning" sensation near the end of a whiz....this is very infrequently. My doctor detailed it as a dysuria...Has anyone else experienced this? I thought it had to deal with a UTI which I took cipro for after the cath came out. Secondly...the pain in the perineal area...when will it end? The only way I can sit down is on a donut pillow...800 mg of ibuprofen relieves the mild pain as well. Lastly...as I told you guys sometime ago, my nerves were spared, but still no response down below. There is sensation, I can "move" it..i.e., flex it, but no woodie! Doc says it's still too early and we'll talk more on my first post op appt. I feel great with exception to these (what I would call...) "minor" problems. I'm 40...41 in July...I feel great and almost reserved in doing what I really want to do...golfing, running, softball..., but everyone is telling me to "relax". Your feedback would be greatly appreciated. P.S. Randy-in-Indy...man, you are doing great!

Comments

  • bdhilton
    bdhilton Member Posts: 866 Member
    #2
    I am happy for you…Outside
    I am happy for you…Outside of the positive margin your outcome sounds pretty good (if having cancer is good) and for sure better than my outcome. Positive margins (from my reading and URO, etc) do not mean 100% that they left cancer and from a radiation stand point it is believed in the medical community now that guys with positive margins should be the only guys getting radiation as the cancer is still “local”…so in a way that is good if you have adjunct or salvage I the future…

    I was 12 week post surgery yesterday and I still get up like you once at night and have been dry from the day the cath came out. I still have a slight burn like you mention so I guess I have this dysuria as well…but bottom line is that I am total blessed in dry and in control department…I would only suggest that you keep up the long walks and/or runs and kegals…

    Now Mr. Woody…since week 3 I have been injecting bi Mix 2 or 3 times a week plus I take 5mg Cialis (a little more than half my nerves were spared)…The good news for me I have had erections, intercourse and orgasm from week 3 with the injections…Last night was the first time I had a partial erection on Mr Woody’s own…So at 12 weeks I guess I am experience great improvement….

    If you have ready my ranting here you know I walk (mostly hike) over 50 miles a week (since week 3 to 4) and lift weight 3 times a week (weights were from week six)…I believe diet is key as well…

    In closing I might elect to have salvage instead of adjunct radiation as what I have been reading (interrupted by me) MAYBE I would have better results 1-2% better if I had adjunct over salvage but if I do not need radiation (I never get a rise in my PSA) then I am better off with not getting adjunct…A decision I have to make in the next 30 days or so…. But I believe that diet can help me a lot here…

    Best to you and everyone else fighting this beast PCa and our families
  • 142
    142 Member Posts: 169
    #3
    Perineal Pain
    I am Davinci +31 weeks, and still have "discomfort", not really pain, in the perineal area. I think the real pain that made the cushion mandatory continued almost 3 months. I still use the cushion for hard chairs.

    Sounds like the incontinence front is progressing well.

    The advice to take it easy is good - heal now while you can. If you overdo things, the damage may not show up for quite a while.
  • lewvino
    lewvino Member Posts: 1,010 Member
    #4
    If you haven't read it buy
    If you haven't read it buy Dr. Patrick Walsh's Guide To Surviving Prostate cancer. He has a large section on positive margins. After I read it I was very much at ease with my Positive margin.
    Sounds like its in the same area yours is. The Apex. The downgrade to 3+3 6 is Good News. The negative lymph nodes is good news, the negative seminal veisical s GREAT NEWS! Doc told me that think of the surgery as lightening hitting a tree. The lightening kills the tree and stuff around it. Hopefully the surgery trauma killed any surronding cells in that margin area!
    I have my 10 month post davinci psa coming up in June...So far 0's on the PSA.

    If you want to chat just shoot me a message. Can call you for free with our phone plan.

    Larry
  • 07SHNNAC7081522
    07SHNNAC7081522 Member Posts: 17
    #5
    lewvino said:

    If you haven't read it buy
    If you haven't read it buy Dr. Patrick Walsh's Guide To Surviving Prostate cancer. He has a large section on positive margins. After I read it I was very much at ease with my Positive margin.
    Sounds like its in the same area yours is. The Apex. The downgrade to 3+3 6 is Good News. The negative lymph nodes is good news, the negative seminal veisical s GREAT NEWS! Doc told me that think of the surgery as lightening hitting a tree. The lightening kills the tree and stuff around it. Hopefully the surgery trauma killed any surronding cells in that margin area!
    I have my 10 month post davinci psa coming up in June...So far 0's on the PSA.

    If you want to chat just shoot me a message. Can call you for free with our phone plan.

    Larry

    Interesting Book!
    Funny that you detail the book...that's the sedative that put comfort in my "travels". 9 Mar 10 is when I got the news over the cell phone in a soccer coaches meeting. Kind of went like this...(didn't like it at first, but I can appreciate it now...what way do you tell a guy he's got PC...) the doc states "...I've got some news for you"... (my reply..."obviously, with you getting back to me this soon, it must be good...)...he replies back...no, actually it's not that good...you've got prostate cancer. Instant jaw dropper! As I'm in shock and disbelief, he told me to write down three things 1 - my PSA, 2 - my gleason score, and 3 - my stage. Then he told me to go by this book by Dr Walsh, read it, and then call him the following week for gameplan. I read that book like it was the last testament...day and night to conclusion. After reading the book, I knew what I wanted to do without any question...I went into his office literally armed with alot of info..so much that I was almost finishing his sentences when he was talking about the different alternatives used to resolve PC. I recently "once-overed" the part about positive margins and recalled the portion about the sentiment regarding when lightning strikes a tree and grass dying around it...relating the same thing to prostatectomy. I'm optimistic about my first appointment...really looking forward to it. Currently, I'm sitting around the house waiting to go back to work...not looking forward to that, especially having to "sit down". The only way to do it is with the cushion...just don't want to do that and would much rather go back fully recouperated. P.S....yesterday was my 4th week post-op...celebrated with 18 holes today! Took my time...no rushes. I out drove the foursome all day long and shot an 89. Not bad for the first time out since 8 weeks ago.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #6
    We'll call you 007....the 40 yr old with PCa
    You are going to do just fine....as young as you are everything should bounce back pretty quickly but remember it affects us all differently. I had a similar burning sensation at the end of the urination early on...for me it eventually just went away. I went snow sking for 6 hours with my son on day 60 or 90(can't remember, posted here though) following da vinci and had not one reminder of having surgery. As I recall just around my first follow-up with Uro at 3 months I was feeling I could start my days without a pad and after returning from the appointment I did at home - as I work out of home office. I now have reverted back to 1/2 pads...thats all I ever used - cut them in half and tape with silk cloth tape - when I know I am going to be doing something very physical like digging footers for my addition I'm building on my house or if I know I will be consuming some beer..well a few beers... I still have minor squirts occur at certain points like climing off the John Deere lawn tractor. You will probably find that there will be certain movements that cause leaks...like while playing softball etc so a half pad is not such a crime to have in these situations. I would suggest getting on an ED drug Viagra Cialis or levetri to increase blood flow to the member...you need to keep the tissue recieving blood or it will atrophy and perhaps not be there to work after your nerves wake up and get ready. I bought a pump but rarely use it now because I am already starting to experience semi-erections without any drug. I found generic Viagra that I am buying from India at about $2.10 per pill is working really good. 1/2 pill works fine now so thats a pretty cheap erection...LOL

    I did notice pain at certain points but I was rarely in pain from the get go with this surgery which I really feel credits the surgeons ability but again it just may be the individual differences from patient to patient. My worst pain occured during BM's and that continued even beyond the three month timeline.

    Hope I have helped!

    PS my doc said if you feel like you can do it just go for it as your body will tell you if you can't - he said that at my first three month checkup...I'm seeing him 6-5, Wed for my 2nd 3 month'er and I'll be Hi'5ing him again with the Non-detectable!

    Later

    Lucky Randy in Indy
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #7
    lewvino said:

    If you haven't read it buy
    If you haven't read it buy Dr. Patrick Walsh's Guide To Surviving Prostate cancer. He has a large section on positive margins. After I read it I was very much at ease with my Positive margin.
    Sounds like its in the same area yours is. The Apex. The downgrade to 3+3 6 is Good News. The negative lymph nodes is good news, the negative seminal veisical s GREAT NEWS! Doc told me that think of the surgery as lightening hitting a tree. The lightening kills the tree and stuff around it. Hopefully the surgery trauma killed any surronding cells in that margin area!
    I have my 10 month post davinci psa coming up in June...So far 0's on the PSA.

    If you want to chat just shoot me a message. Can call you for free with our phone plan.

    Larry

    Larry,
    Good luck on June appointment but when you go 6 months without any PSA it builds confidence that you have beaten the ugly beast at least for me it has. I too have the free phone plan - so when are you passing up this way again? Are you seeing Dr. Smith in Nashville for your appointments or is your follow-ups with a local URO?

    Randy in Indy
  • lewvino
    lewvino Member Posts: 1,010 Member
    #8
    randy_in_indy said:

    Larry,
    Good luck on June appointment but when you go 6 months without any PSA it builds confidence that you have beaten the ugly beast at least for me it has. I too have the free phone plan - so when are you passing up this way again? Are you seeing Dr. Smith in Nashville for your appointments or is your follow-ups with a local URO?

    Randy in Indy

    Randy .... Yes it builds
    Randy .... Yes it builds confidence but I have a positive margin so a little nag in the back of my mind! Dr. Smith gave me the option of seeing him or my local urologist for PSA checks. To save driving distance of 300+ miles round trip I see the local Doc for the PSA testing.
    I'm on a weird schedule with the margin! Never heard anyone state getting the test at 10 months but that is what the Doc wants. Thought it would be at 1 year. This will be my third PSA test since surgery Last August. Can't wait to get a 0 report!

    I've been thinking about a trip up north to my parents and just haven't picked a date. Believe me though when I plan it I WILL STOP In INDY to meet you!

    Larry in Tn. Born a Hoosier boy but one of them Damn Yankees that moved South and stayed!
  • 07SHNNAC7081522
    07SHNNAC7081522 Member Posts: 17
    #9
    lewvino said:

    Randy .... Yes it builds
    Randy .... Yes it builds confidence but I have a positive margin so a little nag in the back of my mind! Dr. Smith gave me the option of seeing him or my local urologist for PSA checks. To save driving distance of 300+ miles round trip I see the local Doc for the PSA testing.
    I'm on a weird schedule with the margin! Never heard anyone state getting the test at 10 months but that is what the Doc wants. Thought it would be at 1 year. This will be my third PSA test since surgery Last August. Can't wait to get a 0 report!

    I've been thinking about a trip up north to my parents and just haven't picked a date. Believe me though when I plan it I WILL STOP In INDY to meet you!

    Larry in Tn. Born a Hoosier boy but one of them Damn Yankees that moved South and stayed!

    Confidence!!!
    Lewvino...It was great talking to you today!! Looking forward to the 1st post-op appt and letting the "team" know I'm doing great...! Your voice sounded larger than life itself...thanks for the call bud!
  • 07SHNNAC7081522
    07SHNNAC7081522 Member Posts: 17
    #10
    randy_in_indy said:

    We'll call you 007....the 40 yr old with PCa
    You are going to do just fine....as young as you are everything should bounce back pretty quickly but remember it affects us all differently. I had a similar burning sensation at the end of the urination early on...for me it eventually just went away. I went snow sking for 6 hours with my son on day 60 or 90(can't remember, posted here though) following da vinci and had not one reminder of having surgery. As I recall just around my first follow-up with Uro at 3 months I was feeling I could start my days without a pad and after returning from the appointment I did at home - as I work out of home office. I now have reverted back to 1/2 pads...thats all I ever used - cut them in half and tape with silk cloth tape - when I know I am going to be doing something very physical like digging footers for my addition I'm building on my house or if I know I will be consuming some beer..well a few beers... I still have minor squirts occur at certain points like climing off the John Deere lawn tractor. You will probably find that there will be certain movements that cause leaks...like while playing softball etc so a half pad is not such a crime to have in these situations. I would suggest getting on an ED drug Viagra Cialis or levetri to increase blood flow to the member...you need to keep the tissue recieving blood or it will atrophy and perhaps not be there to work after your nerves wake up and get ready. I bought a pump but rarely use it now because I am already starting to experience semi-erections without any drug. I found generic Viagra that I am buying from India at about $2.10 per pill is working really good. 1/2 pill works fine now so thats a pretty cheap erection...LOL

    I did notice pain at certain points but I was rarely in pain from the get go with this surgery which I really feel credits the surgeons ability but again it just may be the individual differences from patient to patient. My worst pain occured during BM's and that continued even beyond the three month timeline.

    Hope I have helped!

    PS my doc said if you feel like you can do it just go for it as your body will tell you if you can't - he said that at my first three month checkup...I'm seeing him 6-5, Wed for my 2nd 3 month'er and I'll be Hi'5ing him again with the Non-detectable!

    Later

    Lucky Randy in Indy

    007 -Nice!
    I'm no 007...that's you and lewvino! I experience a little of the pain when I feel a BM coming. Pain subsides afterwards. I have to keep in mind that it has only been one month post op. Keep up posted on the 5th. I'll give you a "virtual" high 5.

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