Home Forums All Categories Non Invasive Bladder Cancer Newbie! I’m checkin’ in….

  • Newbie! I’m checkin’ in….

    Posted by maryland_mike on October 25, 2011 at 1:29 pm

    Hi, all – I’m checking in to this good forum. I will be monitoring and posting throughout my odyssey. Here’s my present status:

    – Cystoscopy on 8/19/11, performed after CT indicated a 2cm bladder stone (had slight hematuria in urine samples twice over 1 yr.), revealed several “polyps” on bladder wall, and a bladder diverticulum.
    – Underwent “trifecta” on 9/28, all in one surgery:
    1. HoLAP (Holmium Laser Ablation of the Prostate) for enlarging ureter path through prostate
    2. Bladder stone ablation with Holmium laser
    3. TURBT, with tissue sent to biopsy
    – Diagnosed with Ta, Nx, Mx non-invasive well-differentiated papillary carcinoma on 9/29.
    – Urologist recommended BCG during post-op visit on 10/14.
    – Received 2nd opinion from Head of Urologic Oncology at highly rated large hospital on 10/18. Opinion for treatment was in total agreement with my urologist’s.

    I will be starting the BCG in several weeks – we are waiting due to some post-op bleeding. I will post progress reports on this forum. I greatly appreciate the forums here – I have leared a lot about what to expect during the BCG treatment.

    Anyone else with bladder diverticula? I would like to communicate with them, as I had cancerous polyps around the mouth of the diverticulum, which the 2nd opinion doctor said should merit special attention, with perhaps removing the diverticulum in the future after the BCG.

    Cheers – BTW, the Maryland blue crabs are really good eating this year. :)


    TURBT, HoLAP, bladder stone ablation 9/28/11
    Ta, Mx, Nx
    Alan replied 9 years, 9 months ago 15 Members · 47 Replies
  • 47 Replies
  • Alan

    Member
    October 18, 2014 at 2:39 am

    I am free 6.5 years out!


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
  • sara.anne

    Member
    October 18, 2014 at 12:10 am

    CONGRATULATIONS!! And thanks for reporting in….it is encouraging to those just starting out.

    I am now almost 6 years out and still cancer-free!!!

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • Maryland_mike

    Member
    October 17, 2014 at 9:40 pm

    Well, folks – after 2 years from my last report, I am STILL CANCER-FREE! I have graduated to once yearly cystoscopies, and I have my next annual one on December 8. I will let you know how it goes. BCG FOREVER! It seemed to work on me so far….


    TURBT, HoLAP, bladder stone ablation 9/28/11
    Ta, Mx, Nx
  • mmc

    Member
    October 10, 2012 at 9:16 pm

    Good deal Mike. Glad to hear it and congrats!

    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

    Member
    October 10, 2012 at 3:53 am

    Hi Mike… So happy you stopped by to catch us up on how things are going. I am ecstatic to hear of your wonderful progress and good checkups.

    Your determination to spread the word about the symptoms of BC and the importance of early intervention by sharing your own experience is great to hear. I’m with you on wishing for more research and finding better ways to do battle with this and all cancers.

    Congrats and keep up in the loop!


    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

  • Maryland_mike

    Member
    October 10, 2012 at 3:44 am

    Well, it’s about time I reported on my wonderful progress. I have been clear of tumors in the bladder after two cystoscopies, each three months apart :) . I will be getting a cystoscopy every three months twice more, then I go to a six-month schedule. I have NOT had any follow-on maintenance BCG treatments after the initial series of six, as both urologists on my case recommended to “wait and watch” due to the low grade of the tumor removed with the diverticulum (via Da Vinci robot) and the tumors resected from my bladder wall. I’m one lucky man, and I urge everyone I discuss my saga with to get to a urologist immediately if they have any symptoms, especially blood in a routine urine sample.

    KUDOs to the administrators of this board, and to the patients and victims who so openly discuss their battles with this terrible affliction. Let’s all hope and pray that medical science keeps progressing to find more effective weapons against ALL of the thousands of cancer types out there. :)


    TURBT, HoLAP, bladder stone ablation 9/28/11
    Ta, Mx, Nx
  • mmc

    Member
    March 17, 2012 at 2:34 pm

    Mike

    That should teach me not to post before doing all my research. :)
    Thanks for checking that out!

    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.
  • mmc

    Member
    March 17, 2012 at 2:34 pm

    Mike

    That should teach me not to post beforevdoing all my research. :)
    Thanks for checking that out!

    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.
  • Maryland_mike

    Member
    March 17, 2012 at 1:39 pm

    maryland_mike wrote:

    Hey, Mike – Indeed, the TB vaccine bacillus is available worldwide; however, I’m not so sure that the TB vaccine variety is used to treat BC (in the U.S., anyway). I have a package from one of my BCG treatments here in my hand, and the package says “For treatments and prophylaxis of superficial transitional cell carcinoma of the urinary bladder” – otherwise, quite specific. It’s manufactured by Sanofi Pasteur, LTD in Toronto., and goes by the “TeraCys” trade name. The NDC is 49281-880-01. I suspect the stated shortage I heard is due either to distribution or a temporary demand peak – hopefully it’s not manufacturing capacity. Bottom line – I hope I (and others) don’t have to wait for upcoming treatments! :<)

    I should add that the box also says “BCG Live (Intravesical)”, and icontains one 81mg vial of BCG, plus one 3ml vial of diluent. The AMA CPT code is 90586. Perhaps intravesical bladder usage is limited to this NDC and packaging.


    TURBT, HoLAP, bladder stone ablation 9/28/11
    Ta, Mx, Nx
  • Maryland_mike

    Member
    March 17, 2012 at 1:33 pm

    Hey, Mike – Indeed, the TB vaccine bacillus is available worldwide; however, I’m not so sure that the TB vaccine variety is used to treat BC (in the U.S., anyway). I have a package from one of my BCG treatments here in my hand, and the package says “For treatments and prophylaxis of superficial transitional cell carcinoma of the urinary bladder” – otherwise, quite specific. It’s manufactured by Sanofi Pasteur, LTD in Toronto., and goes by the “TeraCys” trade name. The NDC is 49281-880-01. I suspect the stated shortage I heard is due either to distribution or a temporary demand peak – hopefully it’s not manufacturing capacity. Bottom line – I hope I (and others) don’t have to wait for upcoming treatments! :<)


    TURBT, HoLAP, bladder stone ablation 9/28/11
    Ta, Mx, Nx
  • mmc

    Member
    March 17, 2012 at 2:39 am

    There is actually LOTS of it produced and it is used all over the world. Last year, there were shortages in India and there have been periodic other shortages.

    Remember, the ‘on label’ use for it is a tuberculosis vaccine. It is given to children all over the world to try to prevent tuberculosis.

    The cancer treatment use, while widespread and included on instructions, is still often referred to as an ‘off label’ use of BCG.

    Sometimes, there are short term distribution problems of BCG but not too often.

    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.
  • gkline

    Member
    March 15, 2012 at 3:36 pm

    congratulations Mike!
    You now have the honor of being the FASTEST Discharge EVER on this site from Bladder cancerMajor surgery!

    You have had the latest in New Wave Surgery. I am so glad it went smoothly. The surgical skill is still the key to using any tool. The tool is just a tool and an idiot like me couldn’t open a bottle cap with it.
    We are all so happy to hear of this success! This is the new wave of care. Instead of being opened from stem to stern, others can look forward to less invasive procedures and quicker recovery. AMAZING!

    Welcome to the club!

    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]

  • Warrentug

    Member
    March 15, 2012 at 6:18 am

    My doctor had to push the start of my BCG treatment back two days last week because he was having trouble getting the medicine. The drug companies make a ton of money on this stuff, I don’t understand why they don’t make enough of it. Warren.

  • Maryland_mike

    Member
    March 15, 2012 at 2:38 am

    Here’s data on mmc availability: http://www.ashp.org/drugshortages/current/bulletin.aspx?id=433. There is nothing there regarding BCG; however, the doctor telling me of the shortage is Director of Urological Oncology (and my surgeon) at a very large highly-ranked regional hospital.


    TURBT, HoLAP, bladder stone ablation 9/28/11
    Ta, Mx, Nx
  • mmc

    Member
    March 15, 2012 at 2:10 am

    maryland_mike said that’s what his doc told him and that’s what Mark repeated.

    That is, both Mitomycin and BCG were experiencing shortages.

    I know the mmc (mitomycin) has been having shortages on a regular basis for the past five years or so (at least). Haven’t heard that about BCG shortages before though.

    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.
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