• Posted by cljjlk on August 13, 2009 at 6:32 pm

    Hey Gang,

    Even though I have been coming here for over two years, I don’t always participate as often as perhaps I should. However; as in the past, when the chips are down we all seem to come back here for that personal support. I’m back for that support again.

    I had my quarterly cysto yesterday and he found another tumor. This is the fourth reoccurrence since the initial diagnosis in 2005. My Uro. stated that from the visual it looked like it could be an early recurrence of a TA1 (as I have had in the past) or (here’s the kicker) an early CIS. I’m scheduled for my TURBT on Au. 25th. I will have to be patient and wait until then for the final diagnosis.

    As you can imagine, I have a thousand questions and all kinds of fear running through my head. In any case I am going to do a bullet list of a few and I know I can depend you to either answer or send me to the right link that will answer my questions.

    • I found a link here some months ago about a study that was going on that made a recommendation for patients that had three or more reoccurrences within a three to five year period. If I recall, the link was a lecture given by someone doing a study of non-invasive patients that had multiple reoccurrences. Does anyone remember the link? • If it is found to be CIS, is the best treatment a full series of BCG? I had eight treatments of Mitomycin C last year after a TA1 tumor was found. • Is it out of the norm to continue to have these reoccurrences? At what point do you go to a more aggressive treatment (beyond the BCG or Mitomycin)?

    Thanks for your support

    Chuck


    dx – Aug 2005
    Five reoccurences (last 12/09 Ta high grade)
    BCG Started 10/09 (2 6wk treatment)
    BCG Maintenance started 4/10
    wsilberstein replied 15 years, 4 months ago 14 Members · 37 Replies
  • 37 Replies
  • wsilberstein's avatar

    wsilberstein

    Member
    September 26, 2009 at 6:20 pm

    I took the word “discharge” to imply that it was coming out of your penis when you weren’t urinating. The implication is that the reaction is in your urethra, not your bladder. I have no experience with BCG sinc I was treated with mitomycin C. I did have a discharge with that, but it resulted from a reaction of the mitomycin C passing through a traumatized urethra due to a traumatic catheterization. I definitiely had pain with the discharge and I felt it when the catheter poked me on the way in, so I’m not saying your sitiuation is the same. Just be sure to keep your urologist posted regarding any progression of symptoms.


    -Warren
    TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
    Urethral stricture, urethroplasty 10/2009
    CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
    T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
    Incontinent. AUS implant 2/2014. AUS explant 5/2014
    Pediatrician
  • bill-jr's avatar

    bill-jr

    Member
    September 25, 2009 at 10:26 pm

    Best wishes as you follow the BCG path. I just completed my 1st 3-week maintenance schedule (for 9 total so far). After #7 we had to cut the BCG-dose to a 1/3-dose. The pain & bleeding was more than I could bear at a full dose :woohoo: :woohoo:

    Another Cysto in 6-weeks:S Best wishes to all!


    62
    Turbt (May 09)
    T1 High grade
    Began BCG June 09 (every 3-mo for next 2-yrs)
  • 's avatar

    Guest
    September 25, 2009 at 8:51 pm

    Oh i’m here and researching and have not found this to be a normal discharge from any cases i’ve been reading unless there is an underlying condition which should have been tested for before instillation. A possibility
    Pyuria refers to urine which contains pus. Defined as the presence of 4 or more neutrophils per high power field of unspun, voided mid-stream urine. It can be sign of a bacterial urinary tract infection. Pyuria may be present in the septic patient, or in an older patient with pneumonia.
    Its not a normal process and samples should be taken of the urine and blood to see whats actually going on and of course your uro will say you read too much.
    I would write Dr. Lamm who is very good at a quick response
    http://www.bcgoncology.com/drlamm/askdrlamm.html
    I’m stumped……..:S Pat

  • Alan's avatar

    Alan

    Member
    September 25, 2009 at 8:17 pm

    Just in case you are questioning is it a UTI? However, it is standard protocol to check your urine for any infection before BCG instillation. I would presume the discharge is some kind of reaction to it. Where is Patricia when we need her?


    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.
  • mmc's avatar

    mmc

    Member
    September 24, 2009 at 10:48 pm

    Chuck,

    Glad to hear that your John’s Hopkins 2nd opinion agreed with the course you are on.

    I got a 2nd and 3rd (my uro recommended as it was out of his area of expertise) and they both agreed as well.

    Can’t imagine what I’d do if I had 3 different opinions. Rock, Paper, Scissors?

    I never had that discharge thing you’re talking about either but I only had a couple of doses of BCG before I flunked out due to bad reaction.

    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
    September 24, 2009 at 8:51 pm

    Chuck,
    I have had 23 BCG and I haven’t had any discharge, but everyone reacts differently.
    I, too, had my slides sent to JH early on, and they also agreed with the reading (Ta CIS) and also said BCG and Maintenance. So far, so good. I go for another cysto Oct 30th.
    Good Luck with the remaining 4 BCG’s:cheer:

    Nix


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

    cljjlk

    Member
    September 24, 2009 at 8:23 pm

    Just to update everyone that has been so supportive, I have completed week two of BCG and all in all it is going well. I have had the usual fatigue and after the second dose a little of the flu like symptoms. One thing did happen that I don’t remember anyone mentioning it before was a discharge. After the second dosage, it started about 3 or 4 hours later. It started like the look and consistency of a bladder or prostate infection (yellowish white). As the day progressed it changed to a clearer liquid and not as thick (I know this is gross). The discharge lasted about 36 hours. There was no discomfort (burning or pain). I called my URO and he reassured me that it was the BCG working and not to be alarmed. Hopefully I don’t have to deal with this every week. To also update you, we finally got a reading from John Hopkins and they confirmed that the tumor was a TaG3. They agreed with the BCG treatment and the follow up TURBT. I guess this was like getting a second opinion without having to travel to Baltimore or having to go through another exam. Again, thanks for all your support.

    Chuck ;)


    dx – Aug 2005
    Five reoccurences (last 12/09 Ta high grade)
    BCG Started 10/09 (2 6wk treatment)
    BCG Maintenance started 4/10
  • mmc's avatar

    mmc

    Member
    September 11, 2009 at 7:02 pm

    You have the right attitude about not blindly following even though you do want to have faith in your doc!


    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.
  • 's avatar

    Guest
    September 11, 2009 at 6:07 pm

    Sorry…it was the word “depth” that concerned me as that would be related to Stage….how deep the tumor had penetrated. Grade is how aggressive it is..and that is more often than not a variable…often misdiagnosed. So its a good thing that he is seeking confirmation from Hopkins.
    Pat

  • cljjlk's avatar

    cljjlk

    Member
    September 11, 2009 at 3:22 pm

    Patricia,
    I think it is my confusion of his explanation. What I read from the responses here is the WHO has classified Urothelial papilloma as two types (low-grade & High-grade). If I further understand the grading, American Cancer Society grades non-invasive as either Ta or T1. So when he was talking about the depth of the tumor being a 2 or 3, might he be talking about G2 or G3? I thought he said it was not into the lamina propria. I’m still confused. The reason he sent the slides to John Hopkins; he stated, was to obtain an additional opinion about the margin between the involved tissues. He said for his edification it would determine if it was a 2 or 3. The Pathologist here classified it as non-invasive high-grade papillary carcinoma. I brought up the staging of the Ta, etc. and it was in his conversion that I most likely got confused. He further stated that this was strictly for his knowledge and that it would not change the treatment plan (BCG). You and others here are such a rich source of knowledge and experience that I don’t question your responses. However, I think it often some of us novices that confuse the facts. I also feel that as a patient, you either have to have confidence in your doctor or you should be searching for one that you do. But I also feel that you shouldn’t have blind faith in everything your doctor says and does. You have a responsibility to educate yourself to a comfortable level of confidence and security. Again, I thank you and the others for your support.
    Chuck


    dx – Aug 2005
    Five reoccurences (last 12/09 Ta high grade)
    BCG Started 10/09 (2 6wk treatment)
    BCG Maintenance started 4/10
  • mmc's avatar

    mmc

    Member
    September 11, 2009 at 12:46 pm

    Here is another article on staging that you may find helpful.

    http://www.emoryhealthcare.org/departments/urology/bladder_cancer/bladder_cancer_Grading_and_Staging_FINAL_REVISED_1_19_04.html


    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.
  • moonerj's avatar

    moonerj

    Member
    September 11, 2009 at 1:06 am

    Hi Alan
    I am so glad your Uro has sent the slides to a medical facilty that truly understands staging of bladder cancer. Ensure you get a 2nd opinion from a Uro from this facilty.
    Either you mis-understood your Uro or he does not understand bladder cancer staging.
    As Pat has linked to, staging of bladder cancer is TA, T1, T2, T3, and T4. Nothing new here.
    I wish you all the best,
    Jack


    TA Grade 1
    3 Turbts
    30 BCG Treatments
    Cancer Free since Nov 2007
  • Alan's avatar

    Alan

    Member
    September 10, 2009 at 11:14 pm

    Patricia,

    Well said. Adding another BCG PDF file for Chuck’s inspection. Probably the best
    summary I have seen. http://www.urotoday.com/prod/pdf/eau/05_TaT1_Bladder_Cancer.pdf


    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.
  • 's avatar

    Guest
    September 10, 2009 at 11:11 pm

    Alan….gee don’t know where he came up with new staging but as of May 2009
    Non-invasive papillary urothelial carcinoma is designated as stage Ta, while stages T1, T2, T3 and T4 refer to invasion into the subepithelial connective tissue, muscle, perivesical tissue and adjacent organs, respectively.
    This is from the American Cancer Society as of May 2009
    http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_bladder_cancer_staged_44.asp

    Since he is sending the sample to Johns Hopkins to determine the depth..makes me wonder why his pathology department can’t do that. But i’m glad for the second opinion.
    I definately would not schedule anymore BCG until you get those results and maybe a second opinion.
    Pat

  • Alan's avatar

    Alan

    Member
    September 10, 2009 at 11:03 pm

    Chuck,

    There are MANY abstracts that give differing stats. Again too many variables to quantify exactly. Here is one that gives very encouraging stats.

    http://www.urotoday.com/37/browse_categories/bladder_
    cancer/efficacy_of_bacillus_calmettegurin_in_the_treatment_
    of_superficial_bladder_cancer_the_impact_of_previous_
    intravesical_treatment__abstract.html


    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.
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