Newly Diagnosed with Bladder Cancer

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Refractoryman
Refractoryman Member Posts: 1
in Bladder Cancer #1

Hi, glad I found this site.  I am 61 years old / never smoked other than SECOND HAND.  I have a history of kidney stones and occasional blood in urine.  But I always assumed it was from the stones and never got alarmed.  I went in for a CT scan for another issue and a small 5mm mass was ssen on my bladder.  I followed up with my urologist and after a cysoscopy and a TURBT I was diagnosed with bladder cancer. I have some questions.  Biopsy results are as follows:

A) Bladder Biopsy #1

     Urothelial mucosa with congestion No definite evidence of maligancy

B) Bladder Biopsy #2

      Urothelial CARCINOMA IN-SITU (CIS)

C) Bladder Biopsy #3

     Urothelial CARCINOMA IN-SITU (CIS)

D) Bladdder Tumor

      NON-INVASIVE HIGH GRADE PAPPILLARY UROTHELIAL CARCINOMA (ISUP/WHO 2004)

D) Bladder Tumor, deep

     NON-INVASIVE HIGH GRADE PAPPILLARY UROTHELIAL CARCINOMA (ISUP/WHO 2004)

      Muscularis propria (detrusor muscle) present, not involved by tumor

As the doctor was going over the results my mind went completely blank with an overall nauseous feeling over whelming me.  To say the least I was shocked and could not think of any of the questions I wanted to ask him.  I came home and stared into space the entire day.  His recommended course of treatment is to start a 6 week BCG regiment next week with a bladder biopsy to follow 2-5 weeks after the BCG.  He did explain to me that back in the day a total bladder removal would have been recommended.  But since the advent of therapies like BCG and the type of cancer I have that the BCG as of now is the first line treatment.  I have agreed with the doctor and will begin treatment.  So below are some questions I wanted to ask the doctor but forgot tha maybe some on this forum can help with;

  1. Any comments from anyone?
  2. Can you tell the stage and grade of the cancers found (TNM system) from above results?  They were not on biopsy report and doctor did not mention? 
  3. I am assuming this was caught early and appears biopies are superficial? 
  4. Can I have some comments on the BCG treatment as to what to expect?  As I said I am glad I found this site because I have read some HORROR stories on other BCG reviews.
  5. Part of me says watch and wait but then the doctor says you are really lucky that the radiologist picked this up.
  6. Is the BCG a good treatment plan?

Any other comments would be greatly appreciated.

Thanks

     

Comments

  • GingerMay
    GingerMay Member Posts: 134
    #2
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    What you describe as mind going blank, nausea and being overwhelmed sounds about normal to me.  I've described it as being hit in the gut by a cannon ball.  As for questions, please see I've copied a link below to someone's post elsewhere on this site.  It is a list of questions about chemo - and I know you are NOT doing chemo but you may find some questions apply to any type of treatment.  

    I think you have a good list started.  As for your question on BCG, I understand it is the American Urologic Association's standard course for next step in care.  That said, is it good?  Hmmm.... my 2 cents it is only average, but is the best they've got.  If you go to other hospitals with cancer departments specializing in this type of cancer, they may have pioneered their own treatments which may or may not be better. 

    I'm not a medical expert and others may chime in with their perspectives.  I understand others have taken BCG treatments, find it can be administered relatively simply, and had no further recurrence of the cancer.  This may be one question to add to your list, but I 'think' BCG offers patients a reduced risk of recurrence PLUS a reduced rate of aggressiveness if it does recur.  Those 2 factors in themselves may make BCG a reasonable treatment to take.  It is a judgement call.  Bless you as you make your decision on next steps.  Please post again as you can to let us know how you are doing.      

    https://csn.cancer.org/node/311245

     

  • Lazy_Bones
    Lazy_Bones Member Posts: 17 Member
    #3
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    You can also get lots of info

    You can also get lots of info on BCG and CIS in the bladder at this link: http://www.inspire.com/groups/bladder-cancer-advocacy-network/

     

    This is a very active site of bladder cancer patients, survivors, and caretakers of those with bladder cancer. 

  • rosatt8
    rosatt8 Member Posts: 5 Member
    edited May 2021 #4
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    BCG

    I had bladder cancer and blood in urine.

    I had TURPT.

    I had 8 doses of BCG. It was painful for a few seconds each time.

    I am told that I am now in remission.

    on 9th June 2021 I am due for a cystoscopy.

    I am to have a cyst

  • Alish
    Alish Member Posts: 1 Member
    #5
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    This week has been quite busy in "My Bladder Cancer(BC) Journey" as I have been to three different hospitals but I got the all clear so all worth it with just one more test result to come on Monday I live for another 3 months until the next round of testing, even plan on going on holiday. Well done on your own personnel "Ankr app" and long may it continue. Your emotional journey sounds much the same as mine as it's in the early hours when you lie in bed thinking about the whole stupid world that has been thrown at us and the question is always "Why Me" but you get up and get on with life as it is and thats what counts.

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