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Homepage – Forum Forums Newly Diagnosed With Bladder Cancer Why not straight to TURBT?

Viewing 15 posts - 1 through 15 (of 15 total)
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  • #36726
    hdm
    Participant

    Have recently learned  of tumour seen on ultrasound and questioning people here, if anyone knows, why I am not going straight to TURBT rather than a cystoscopy?  Seems like a step that is not really necessary, at this point?  Have had microscopic hematuria for nearly 4 years but was refused cystoscopy since I did not meet the criteria.  I am a woman.

    #36727
    hdm
    Participant

    Should have made myself more clear.  I was originally refused a cystoscopy but now, after ultrasound, I am getting one tomorrow.

    #36728
    Jack Moon
    Keymaster

    Good question for your Urologist tomorrow. I believe he/she will say that ultrasound is not 100% accurate in determining that the mass in the bladder is fact a tumor.

    All the very best tomorrow,

    Jack

    #36729
    hdm
    Participant

    Thank you for your prompt reply.  I am not a seasoned poster so I realized, after first post, that I could have used the edit feature.

     

    I will ask that question tomorrow but the radiologist described my mass pretty clearly to me and it looks very much like a text book description of bladder cancer.

    I do expect that I will be on this forum a lot in the upcoming weeks/months.   I am having a lot of anxiety about all of these developments.

     

     

    #36731
    Nightingale
    Keymaster

    Hi Hdm,

    Thank you for posting your question.  Almost every case/situation is different and unique in many ways.  Jack is correct in that it is a great question for your Urologist.  In my case, my Urologist was able to take a tiny sample during the Cystoscopy and sent it in for analysis.  I received the results some time later and was told that mine was a low grade cancer on the surface lining and that I was very lucky because I caught it very early.

    All the best…

    #36734
    marysue
    Participant

    Hi HDM:

    When I had blood in my urine back in 2008, I went straight to my GP who ordered an ultrasound and x-rays.  Those tests show more than one tumour in my bladder.  I was referred to a uro straight away and he told me exactly what Jack said, that I needed the cystoscopy to visually confirm what the ultrasound showed.  He told me that ultrasounds are sometimes not accurate.  With the cysto you will visually see any tumours or other abnormalities.  He wanted to confirm that it was a tumour(s) and from that determine next steps which for me was the TURBT surgery since I did indeed have multiple tumours.

    Since the TURBT surgery is usually done with a general anesthetic I would suspect that this is the reason that they confirm first so that they don’t put you through anything unnecessary.  Now that it has been determined that you need a cysto, it will rule out whether what was seen is actually a tumour or not.

    I have to ask what criteria you were supposed to meet in order to be sent for a cysto?  Women are often misdiagnosed.  Please do not be afraid to get candid with your uro about what exactly is happening for you and what will the journey be.  We will think positive thoughts and keep our fingers crossed that results will be favourable.  Please keep in touch and let us know how it goes.  ((((HUGS))))

    #36740
    hdm
    Participant

    Thanks to Jack, Nightengale and mary sue for your responses.

    Had my cystoscopy yesterday.  It was an easy procedure and I had no discomfort at all.  Went in thinking I had one tumour but there were 4 more found.  The uro. is going to call me about a date for the TURBT surgery.  He mentioned CT scans, as well, but I am not sure if he meant before or after the surgery.

    Ten years ago I had breast cancer surgery and four rounds of chemo.  I think I have PTSD about hospitals and the word cancer.

    I did mention to him about “not meeting the criteria” for a cystocopy earlier but he just kind of shrugged.  I guess, really, what difference does  it make at this point anyway.

    I am very much worried about how long I had microscopic hematuria and the “early detection” ship might have already sailed.

     

    I very much appreciate that there is this forum to come to and that you are all willing to help those of us who need some answers and calming during all of this. Thank you. hdm

     

     

     

     

     

     

     

    #36745
    Nightingale
    Keymaster

    Thanks for the update hdm!  I hope all goes well for you going forward and thank you again for keeping us in the loop!

    My best,

    #36747
    marysue
    Participant

    Hi HDM:

    Medical “PTSD” or post surgical/treatment trauma is very real but not widely spoken about.  I truly feel that more needs to be done in this area to help people. I know of others that have been traumatized by either cancer surgery/treatment and made going for any subsequent medical stuff difficult.

    For myself, I had other urological issues as a kid that required invasive tests, surgeries and me being forcefully catheterized many times.  Those memories were suppressed and came back to haunt me in nightmares while undergoing frequent cysto exams and BCG immunotherapy treatments.  I know this happened because as you know these procedures require a scope/catheter placed up the urethra.  Needless to say to took a really long time to fully understand what was happening when/why I would do a freak out before each of these.  I was fortunate that a BCG nurse figured it out and told me that I was reliving past trauma.  Once a name and reason was put to it that really helped me put on my big girl pants and get past it.

    If you are struggling mentally/emotionally I suggest that you seek out psycho-social help.  I should have done this but didn’t know about it and I don’t think that there were much in the way of resources at that time but that has changed.  People have told me it makes a difference.  All the best.  ((((HUGS))))

    #36760
    hdm
    Participant

    Thanks mary sue and Nightengale

    Do you know if it is routine to have a CT scan before a TURBT?  My cystoscopy showed one large tumour and 4 smaller ones; does number of tumours mean a worse outcome?  Thanks.

     

    #36761
    marysue
    Participant

    Hi HDM:

    I don’t know if it is routine for uros to send someone for a CT scan before/after TURBT or not.  My uro didn’t order one for me.  A lot do.  I think like many things it depends on the uro’s protocol and what he/she thinks may be happening for that patient. I had 6-8 tumours on my first go round and a single tumour upon recurrence in 2010.  After 21 BCG treatments ending in 2012 I have been cancer free since then and now just go for an annual cysto check in April.

    As for the number of tumours and outcome – I’m not a doctor but I’d say not because tumours can be numerous and very shallow or you could have one or two tumours that are deep or have a mix of shallow and deep tumours.  My tumours were all very shallow – Stage 0 or Ta meaning that they were just on the inner surface of the bladder.  Unfortunately, you probably won’t get a definitive answer until you have had the CT scan and TURBT.  When the tumours are removed during the TURBT surgery they are sent to pathology to be staged and graded.  Once that happens you will know what the next step is.  Stage means how far the cancer has spread and grade means how aggressive the cancer is.  The “best” diagnosis for a bladder cancer patient to hear other than ” all clear” is “low grade non-muscle invasive”  meaning not aggressive and the tumours have not penetrated the muscle wall of the bladder.

    Even though my tumours were very shallow they were considered high grade or aggressive which was the reason for the follow up BCG immunotherapy treatments.

    This pre-surgery wait to determine the exact diagnosis is the toughest part of the bladder cancer journey for the majority of us.  Once you know what is coming it will help to some degree.  Hang in there and try to keep busy to keep your mind from dwelling on all the “what ifs”.  Not easy to do, I know.  Been there, done that twice.  Hope this helps.  (((HUGS)))

    #36762
    hdm
    Participant

    mary sue, thanks for taking the time to respond to my questions.  I am trying very hard to be calm and just wait for the process to play out.  Your explanations and knowledge of this journey are very helpful to me. hdm

    #36763
    Nightingale
    Keymaster

    Hello HDM,

    I know it’s easier said than done, but try not to worry.  I don’t recall having a CT scan before my Turbt.  I don’t think I did to be honest.  In my case, my cancer came back 3 times.  I never did have the BCG treatment as my cancer was on the lining and non-aggressive.  It’s been 10 years since I first learned of my cancer and in 2017, I received my last Cystoscopy.  My Urologist told me I had graduated and that unless I saw blood in my urine or if my blood test and urine sample test came back ‘positive’, I no longer had to go in for yearly checkups.

    In the 10 years, I have to say I always believed that I would be cured and be cancer free; and I’ve always been a non-worrier.  I visualise positive things and truly believe in being healed.

    I was reading one of your earlier post, where you exclaimed “It was an easy procedure and I had no discomfort at all”.  That is a great thought to have.

    I wish you well and look forward to hearing about your results.

    My best,

     

    #36764
    marysue
    Participant

    Hi HDM:

    You are very welcome.  Don’t hesitate to keep asking questions.  I’m glad to be of help.  As the saying goes, “It takes one to know one.”  Back in 2008, I was where you are now but I didn’t have anyone to talk to.  I was so scared, depressed and felt so alone. When I got connected with BCC in 2010, all I could say is that “I have found my tribe.”  It was such a relief to have someone to talk to and get answers to questions.  Since I hadn’t been connected previously I thought that I had a rare disease and that I was on my own.  When I was able to talk to others it helped put things in perspective and that reduced my mental stress considerably.  All the best going forward and don’t hesitate to keep asking questions.  Contact me anytime.  ((((HUGS))))

    #36765
    Jack Moon
    Keymaster

    Hi Hdm

    When diagnosed in 2005, I had 1 large tumor and 2 small ones. I have been all clear since 2007. As everyone says stay positive.

    Keep us posted on your lab report.

    All the very best

    Jack

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