Home Forums All Categories Newly Diagnosed, New To The Forum Re:The map of the journey

  • Re:The map of the journey

    Posted by on January 24, 2010 at 12:26 pm

    Hi Mike –

    I enjoy reading your posts here and on BCAN. I just joimed this group and I reading like crazy! I go see my uro tomorrow and will take a copy of your flow chart – it’s excellent. I go to UM Cancer Center for my consult on Friday. I’m supposed to start BCG on Feb. 3rd but have seen more and more info about how much BC is understaged, and since I’m T1G3, I want to be sure I’m on the correct path. Lots of folks in my situation have elected to go with the RC right away as it seems to have the best odds. Your thoughts? Thanks again for your posts, they alleviate alot of fears, mis-information, and have helped many make an informed decision. Best of luck in the future.

    Andy

    Cynthia replied 14 years, 11 months ago 11 Members · 89 Replies
  • 89 Replies
  • cynthia's avatar

    cynthia

    Administrator
    March 12, 2010 at 8:06 pm

    Andy it has been wonderful reading of your journey and I know it is very very helpful to many we don’t even realize are reading. Once again it has gotten so long 15 pages that I am going to lock it at this point and let you start another leg of your journey. Thanks so much for keeping this going and keep up the good progress!


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society
  • kcnorthstar's avatar

    kcnorthstar

    Member
    March 12, 2010 at 2:04 pm

    Andy,
    Im So glad to hear that your path report is clear! Now you dont have to worry about that and can just concentrate on the recovery process. If your recovery continues at the pace you are on now you will be back to normal in no time!

    KC


    Age 59
    DX Jan 2006 – T1B G3
    RC – Neobladder June 2006
  • dukel's avatar

    dukel

    Member
    March 12, 2010 at 2:50 am

    Andy, it’s great to hear your good news. Hope everything continues to go well for both you and your wife.
    Duke

  • 's avatar

    Guest
    March 12, 2010 at 12:57 am

    Hey Rick –

    All the positive vibes I can muster are heading your way, I’m sure you’ll do great! And George is exactly right, you’ll feel so good about taking charge of your cancer and beating it. It’s daunting getting ready for it and realizing you’ll be down for a bit, but in the big picture it’s a small price to pay to have your health and your peace of mind for the rest of your life. Go at your own pace, it’s the end result that matters.

    Andy

  • hox's avatar

    hox

    Member
    March 12, 2010 at 12:40 am

    Andy: I am 4 days away from my RC and I look forward to your updates every day. I am excited for you being cancer free…. Looks good on you… I appreciate your offer to exchange telephone numbers and will do that once I am home. Right now I am busy getting my recovery room ready, my business ready etc… Rick


    Rick
  • gkline's avatar

    gkline

    Member
    March 11, 2010 at 9:57 pm

    Rick
    My surgery was 8/8/08 (a day that will live in infamy) I was in the hospital for 8 days and I got nothing to eat during my stay. As I left, I was given a tray of delicious hospital fare (I left it uneaten, as I had a better offer… Mcdonalds)

    I was not an unusual case in hindsight. Rudy is the Champion. I am merely an average recovery.

    I just set goals. I also did not want to be a burden on my caregiver. My wife was GREAT and was really there for me. But, I still wanted to get this behind me.

    I did not go crazy though. I pushed myself but was very careful not to overdo it. Walk, Walk, Walk was my mantra. I also put up photos of golfers, skiers, and racing drivers to give me encouragment.

    Some of my favorite little triumphs…… I got dressed every day (I read a story of a cancer survivor who said she would not let this disease take away her dignity. I liked her style and tried to emulate it)
    I talked to my friends and family about the experience (only enough so that they were comfortable in knowing that nothing was off limits) I also sat on the front porch and invited my friends to stop for a chat. Aside from the bathroom visits, they would have thought I was perfectly fine.

    I think my greatest achievement was around mid Sept when my priest came over for a visit and was amazed at my progress, saying “Did you think a month ago you would feel this good?” My answer was, “heck yeah, that was the whole point!” We had a good laugh about it and he has used that in his other visits to recovering patients.

    I wish I had known about this site when I was going through the surgery. I was in the middle of a tornado of activity with very little to hold onto as far as information. As I was at home recovering, I stumbled on this site and, Just as I was starting to feel very alone and slightly depressed, I found these great people who made it through, and continue with the struggle with their heads held high. Just having someone who can relate is a godsend. It also took the pressure off my wife as I could bend someone’s ear that had “been there.. done that.” She was surprised at how little I talk about it at home. I usually beat a subject to death as I try to wrap my mind around it. I do that here.

    One final thought. Everyone recovers at a different rate. This is not a race…. Even for Rudy (the winner and still champion) You will recover, we will help with the down times. AND, You WILL laugh at it all down the road! I promise you will feel a great feeling of having taken charge of an out of control event and tamed it. :side:

    George…….sorry for the crushing word count


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • mmc's avatar

    mmc

    Member
    March 11, 2010 at 9:48 pm

    Well….best I can do right now is root beer here at gate E5 in the Dallas airport.
    I will have beer to toast all of you once I get home to Colorado tonight.

    Andy: you don’t know HOW glad we are that you went to a major bladder cancer center also.
    Breaks my heart sometimes when people don’t or won’t and then to hear about them running into major complications.

    Here’s a toast to Andy, his wife, doctors and nurses!
    Congrats and Bravo to all!


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • rudyskier's avatar

    rudyskier

    Member
    March 11, 2010 at 9:20 pm

    :side: Congratulations Andy.. go on and have that beer, uh.. I think I’ll have one tonight myself…

    Rudy

  • humpy's avatar

    humpy

    Member
    March 11, 2010 at 9:08 pm

    Great news!!!!!! :silly:

    That’s what we all hope to hear. I guess there is NO
    getting oughta buying dinner now.

    Jim


    Age 54
    T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
    Neobladder 5/19/2009
    Prostate Capsule Sparing
    U of M Hospital, Ann Arbor, Michigan
  • 's avatar

    Guest
    March 11, 2010 at 8:44 pm

    Just got off the phone with Dr. Hafez at UM. My path report came back and all margins are good and lymph nodes are clear! So I guess it’s ok to say CANCER FREE! I think I will have my first beer on that news. Can’t thank everyone on the this enough for the advice and encouragement. I don’t know if I would have gone to a cancer center if not for you folks. Life is good!

    Andy

  • humpy's avatar

    humpy

    Member
    March 11, 2010 at 8:27 pm

    kcnorthstar wrote:

    I do have to agree that beer isnt always the best chemo, for really agressive cancers you may have to resort to tequila

    KC

    I’ll drink to that also KC

    I think I might drink to almost anything at this point!


    Age 54
    T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
    Neobladder 5/19/2009
    Prostate Capsule Sparing
    U of M Hospital, Ann Arbor, Michigan
  • leeh's avatar

    leeh

    Member
    March 11, 2010 at 7:42 pm

    mmc wrote:

    However, I can attest to the fact that too much beer (or gin) can have the unintended consequence of having your neobladder relax to the point of complete release after you thought were completely continent. :blush:

    Happened once to me when walking down the hall in my hotel. Luckily nobody was around and I was close to my room when it happened.

    Only happened once, but….

    Mike

    Mike,

    Could it be that you have discovered a cure for hypercontinence!!!!! Instead of cathing – a six pack of bud light!

    Lee

  • kcnorthstar's avatar

    kcnorthstar

    Member
    March 11, 2010 at 12:02 am

    I do have to agree that beer isnt always the best chemo, for really agressive cancers you may have to resort to tequila

    KC


    Age 59
    DX Jan 2006 – T1B G3
    RC – Neobladder June 2006
  • mmc's avatar

    mmc

    Member
    March 10, 2010 at 11:29 pm

    However, I can attest to the fact that too much beer (or gin) can have the unintended consequence of having your neobladder relax to the point of complete release after you thought were completely continent. :blush:

    Happened once to me when walking down the hall in my hotel. Luckily nobody was around and I was close to my room when it happened.

    Only happened once, but….

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • humpy's avatar

    humpy

    Member
    March 10, 2010 at 11:13 pm

    kcnorthstar wrote:

    that is why I am still cancer free almost 4 years later.
    KC

    I’ll drink to that KC


    Age 54
    T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
    Neobladder 5/19/2009
    Prostate Capsule Sparing
    U of M Hospital, Ann Arbor, Michigan
Page 1 of 6

Sign In to reply.