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Homepage – Forum Forums Non-Muscle Invasive Bladder Cancer Screw you cancer, and screw the horse you rode in on

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #8091
    Urbanlamb
    Participant

    Strong language, I know. I wanted to use the ‘f’ word…but pretty sure I’ll get booted off if I do. So I’m just saying it internally.

    So….story so far. Waiting for weight loss surgery, and discovered last October I have bladder cancer. Aggressive non invasive papilloma. Little dangly thingy that got cut out. Now on BCG maintenance.

    Originally the Weight Loss doc said I need to be cancer free for two years before the surgery….but the oncologist wants me to have the operation so that I can lose weight so that when the time comes to say ‘bye bye bladder’ and to create a neo bladder, things will be easier for him, and easier for me.
    So, I should be getting the gastric sleeve this summer sometime…just waiting for the call.

    I have substantial hearing loss (from birth), but function well with a hearing aid. I woke up this morning with sudden hearing loss. Ran to the audiologist and the ENT. Upshoot of the whole thing is that I have a virus (because my immune system is weak from the BCG) and this virus has attacked my nerves in my ear.

    Usual course of therapy is oral corticosteroids but of course I can’t have that because of the BCG, so next best thing is a cortisone shot IN the ear.

    Screw you cancer. If my hearing doesn’t come back, and I lose my job, I’m coming after you with a gun…you better run, ’cause this little lady is getting really ticked off right about now.

    #17658
    Greg
    Participant

    Sorry you’re having the virus issue.
    You mention having to have your bladder out down the road as if it is a sure thing. Certainly the risk is there if you have a high grade, non-invasive tumour, but it is a far cry from a sure thing. The stats seem to show about 20% may progress to muscle invasive disease. Now your uro knows a lot more about it than I do and knows your specific issues. But it seems to me that “maybe” is closer to the truth. I assume your uro is a top-notch doc at a major cancer centre/teaching hospital. Certainly if radical cystectomy ever enters the conversation, you’ll want to ensue that’s who is making the recommendations. An RC is big surgery whether a neobladder is an option or not.
    All the best.
    Greg

    #17661
    marysue
    Participant

    Sorry to learn about your hearing loss. I too have hearing loss. It started before BCG probably due to a combination of head injury and hereditary in my family. It did worsen after the BCG. I wearing hearing aids and manage fairly well. I don’t dwell on it.

    I love your attitude – screw you cancer!! Wow! I said the same thing after my reoccurrence in 2010. I had high grade urolethial carcinoma as well both times. BCG has worked for me. When I was waiting for my second TURBT I basically told the tumour everyday – Na na na…good-bye…sucker! I don’t ever plan to go down the RC road. I have told the cancer to “f” to and not come back same as you. And it won’t. I don’t have time to waste sitting in hospital or a doctor’s office.

    Keep on keeping on… An RC is a huge surgery..Greg knows as he has been down the road twice. My suggestion is don’t go there unless you have to. Hang in there girl. (((((BIG HUGS))))

    #17662
    Rick B
    Participant

    Hey there Urbanlamb,

    Good on the Strong…screw you cancer!!! Yes!!!

    But be Positive too…as Greg says, you may be a long way from ever, if ever, needing a RC to deal with your BC. Not sure about the hearing loss thing… If there is a BCG relation I was not aware and I’ve been treated with BCG many times over the last 2 years…what was that?; oh yes, over the last 2 yrs…:) 🙂

    Now get back on that horse and ride the road to recoevery…you hear!!!

    Rick

    #17663
    shelties
    Participant

    Hi Urbanlamb, my sentiments exactly!! I was diagnosed a year ago with this bladder cancer and its’ been a year from hell. I have had so many surgeries in the last year that I’ve lost count. My first reaction to this was just take it out! However, now that I learned a bit more about this cancer, I’ve changed my mind on that one. That is one huge surgery and I don’t want to go down that road unless it becomes absolutely necessary to save my life. This is my 3rd cancer diagnosis in less than 5 years, having had colon cancer (colon resection) then lung cancer (lung resection) and now this. Fingers crossed – at present, my lung and colon cancers are in remission, but this bladder cancer is here to stay I think. I just had another surgery today – two biopsies. I’m not familiar with all the terms yet, but I’m just starting to realize that this one is very complicated. I think the purpose today was to make sure the cancer has not progressed to the outer layers of my bladder and to make sure my ureters (tubes from my bladder to my kidneys) are clear. I had a major surgery here back in Feb. when a tumor was found in the right tube. I have a plastic tube there now. Of course, I’ve had several rounds of BCG treatments and will have more in a few months. Its’ quite a journey that I would not wish on my worst enemy. Take care and I hope you regain the hearing that you’ve lost.

    Lorraine

    #17687
    KIOWA
    Participant

    I was told at a reputable world wide major cancer research hospital that I needed to have my bladder out. I disagreed and so did my uro. That was over 4 years ago. Still have my bladder, just had a cysto and things look perfect. Go easy on the horses though, one of my favorite animals. And yes the f word may well have gotten you booted off so I guess the horse had to take the hit for this one. But Hang in there. It is not “given” that you need your bladder out. I had the same type of BC as you (the first BC) 18 years ago. I didn’t have my bladder out and went 18 years oir so until BC appeared again, but a different kind of BC. Don’t give up on this. I am in favor of you having the gastgric surgery. I can;t speak for the mnedical community, but if it were me I would have that done.And it is totally possible that the horse was stolen and is not an accomplice to the cancer. My prayers are with you. Please keep us informed and jin us in our discussions. Especially our insane one in the off topic area. Got to have some fun to reduce the stress and a place to talk about other things.

    Kiowa

    #17780
    Augsburg
    Participant

    Hello Urbanlamb,

    I can’t say anything else but to agree with everyone here! Don’t jump into any conclusions as of yet…maybe is only a maybe and I’m convinced that with your positive attitude you will never have to go down the suggested route. Stay on that fighter horse and lets kick your BC in the A. Horses are great kickers! Biiiig hugs to you! A 🙂

    #17893
    Val
    Participant

    Hello Urbanlamb

    I must agree with what people have said here. Don’t assume.

    I had aggressive non-muscle invasive bladder cancer in 2008 & two reoccurences in 2010. They got the cancer but wanted to take the bladder out because although the cancer was gone and didn’t invade the bladder muscle, it was aggressive.

    Well, I did say screw you (but I didn’t say that to his wonderful pony) and switched doctors. I am thrilled to say that BCG treatments and good self-care have helped me keep my bladder for 4 1/2 years – no recurrences, no operations.

    Don’t assume anything, an RC is not an automatic given this disease!

    Best of luck! Post how you are feeling and what’s happening.

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