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  • Hit a bump in the road

    Posted by Flamenco. on May 31, 2012 at 6:25 pm

    Hi All,
    it·s been a while since I·ve been here- my last 6 month cysto showed a small suspicious area – biopsy now shows CIS, so started BCG this week. As I have always paid for my treatment, I decided the time had come to get a second opinion,and get back in the system in case i do need any major surgery at some stage in the future so have asked to see a specialist on the nacional health system, but they gave me an appointment for the end of July, even though I took my records and the recent biopsy result, which I thought was too long to wait and do nothing, will have finished the BCG by the time I get to see him!
    Had a urine check between this last cysto and the previous one 6 months ago, which I was told was negative, but that was done on the national health system,and now i have my doubts as to what they actually checked for.
    So, a bit miffed that the beast is back and that it is now CIS, but at least my uro had decided on 6 month checks after my 5 years clear run, rather than going to 12 month.
    Diane

    Nix replied 12 years, 2 months ago 6 Members · 11 Replies
  • 11 Replies
  • nix's avatar

    nix

    Member
    November 21, 2012 at 12:21 am

    Good news so far, Diane! The TURB is over and you are feeling well. I will keep you in my thoughts until I hear the good news on Dec. 17th :)

    Nancy


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
  • flamenco's avatar

    flamenco

    Member
    November 20, 2012 at 12:06 pm

    Hi and thanks for the good wishes. TURB went well and I have been discharged today and am back home doing the drinking marathon!!The surgeon said everything looked good, so hope that means the bcg did its job, and took several biopsies, but I won·t have results until 17th December, so just have to be patient now.Will post when I have more news
    Diane

  • mmc's avatar

    mmc

    Member
    November 16, 2012 at 12:29 pm

    Best of luck Diane!

    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.
  • nix's avatar

    nix

    Member
    November 16, 2012 at 10:34 am

    Diane,
    Keeping my fingers and toes crossed for you :)

    Nancy


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
  • flamenco's avatar

    flamenco

    Member
    November 16, 2012 at 9:51 am

    Just a quick update – after waiting what seems like for ever, have had a call this morning from the hospital and going in for TURB on Monday – to see if the BCG has done its stuff- wish me luck, will post when I have some news on what they do or don·t find,
    Diane

  • nix's avatar

    nix

    Member
    June 3, 2012 at 6:16 pm

    So sorry the cancer is back…..but so happy your doctor did 6 month checks after the 5 year mark. I, too, had CIS. Did all the BCG and maintenance and so far (keeping my fingers crossed) almost 5 years clear. BCG is exactly the way to go. I went for a second and third opinion after I finished the first round of BCG. (6 doses)Start the BCG then go for second opinion.
    Good Luck
    Nancy


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
  • flamenco's avatar

    flamenco

    Member
    June 3, 2012 at 9:24 am

    Hi All,
    Thanks for your replies and support, and Joey , good luck for your Tuesday test. I was originally going to title this post “Hit a couple of bumps in the road”, but thought it made me sound like a real moaning minnie. Last Monday with my head still in a bit of a whirl- shall I start BCG now, or shall I wait for 2nd opinion etc. took my dog out for a walk down the dirt roads (10 month old Bull Terrier), literally stood on a (loose) bump in the road and popped my ankle – sitting in the middle of the dirt road, Bully leaping all over me( me on the floor usually means rough and tumble time!)mobile phone in pieces, a JCB came round the next bend !! so crawled with dog in tow, bits of phone in hand to the side of the road, then limped and hopped home, cursing myself for being so clumsy. Well, at least I can see the funny side of it now- but itching to get the ankle sorted and back dog walking, biking, etc etcThe funny thing was, I had been feeling a bit fed up, and had just got my positive head back on, and had looked down at the dog and said ” This is nice, isn·t it, walking here with all the little birds running about” (we had just seen a partridge running through the orange trees) thinking actually how lucky I was, when blam, the earth came up to meet me!!!! AAAAArrgh

  • joey's avatar

    joey

    Member
    June 1, 2012 at 4:15 pm

    Diane, wishing you the best. I go for my 4.5 year follow up on Tuesday. I have been clear since then and also had CIS and so far BCG has done its work. See no reason why you won’t also do well.

    joey

  • gkline's avatar

    gkline

    Member
    May 31, 2012 at 10:47 pm

    Diane
    Sorry You had to come back.

    Wishing you the best of luck

    George


    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
    May 31, 2012 at 7:45 pm

    Diane,

    Sorry to hear that it came back. :(

    Starting the BCG is certainly the right thing to do. I won’t get into the debate on national health systems (even though it is quite tempting). :)

    The urine cytology is not 100% accurate in either direction. There are lots of false positives and false negatives.

    Sorry it’s back but at least they found it and can get after it!

    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.
  • catherineh's avatar

    catherineh

    Member
    May 31, 2012 at 7:25 pm

    Hello Diane… I am so sorry to hear that your last cysto resulted in troubling news. It is good that you got right on it with the BCG. I do not know anything about the national health system so I am absolutely no help with that. Did you ask to be put on their cancellation list just in case something should open up?

    Best wishes for good outcomes with your treatments, and in getting your insurance going again soon.


    Best wishes… Catherine

    TURBT 1/21/10 at age 55
    Dx: T2aN0M0 Primary Bladder Adenocarcinoma
    Partial Cystectomy 2/25/10
    Vanderbilt Medical Center
    Nashville, TN

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