skip to Main Content
BCC_Discussion-Forum-Page-Header-new

IMPORTANT: The Bladder Cancer Canada discussion forum is not a substitute for professional medical advice or treatment. The opinions & contents in this forum is for information only and is not reviewed by medical professionals. They are experiences & opinions of patient members like you, and is NOT intended to represent the best or only approach to a situation. Always consult your physician and do not rely solely on the information in this site when making decisions about your health.

Homepage – Forum Forums Non-Muscle Invasive Bladder Cancer When to start BCG post TURBT?

Tagged: 

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
    Posts
  • #47468
    CurtisGord
    Participant

    I am newly diagnosed. Had one turbt (with single time gemcitabine), with pathology revealing a TA high grade tumour. Have another turbt coming up with single time gemcitabine again. Guidelines suggest that I should most likely start BCG within 4 week of second turbt. However, to date I haven’t even seen a bloody doc. Just a surgeon who spoke to me for 2 minutes. I am happy to have the surgeries so fast (2 week wait the first time and the second time), but am worried about needing to see an oncologist and get a treatment plan organized.

    Can anyone tell me their experience? Should I be pushing to see an oncologist? I realize we will get more info from the second turbt, but an anxious about the lack of plan.

     

    #47469
    Cdn
    Participant

    Are you certain that BCG is the best treatment option for you. I am on the BCG treatment plan for high grade non muscle invasive bladder cancer, but I have not had the gemcitabine because of the grade of tumour. I have no contact with Oncology, just my urologist who is directing my ongoing diagnosis, monitoring and treatment. Generally, the bladder tumours are a relatively slow developing and progressing type of cancer, so I have found that there typically are many weeks between contacts, even to set up the BCG treatments. I know it is not easy waiting for the next step (and I am not very good at it), but if BCG is indicated for you, you will be contacted (likely) by a BCG nurse to begin the treatment. They use a smaller catheter to place it in the bladder so it is not as disruptive to the urethra, but a little uncomfortable.

    #47470
    CurtisGord
    Participant

    Thank you so much for your response. No, not certain about the BCG, it was just suggested by the Urologist as one of the options we would discuss post second turbt, depending on what they find. But, at this point they have said TA high grade. With regard to gemcitabine, I was given it with the first turbt before it was even graded (or before I was informed it was graded) and have been informed that I will be given it again for this one.

    I have quite a family history of BC so have seen a range of treatments, surgeries, etc over the past decade or so. Probably too much to reduce my anxiety. And yes, very hard to be patient.

     

    #47471
    Cdn
    Participant

    It appears that your experience far outweighs mine. I certainly wish you the best. Mine started around a year ago and while I am doing OK now, 2023 was a very difficult year for me. Please allow us to use you as a resource at times.

    #47475
    marysue
    Participant

    Hi CurtisGord:

    Welcome to Bladder Cancer Canada but sorry that you have need of us.  My diagnosis twice was TaG3 which means like yours Stage 0 but high grade.  Third time was TisG3 which is Carcinoma In Situ High Grade.

    Some uros will involve an oncologist if the need arises but many will just do the surgery and after the pathology comes in decide about post op treatments.  The majority of urologists are uro-oncologists/uro-surgeons and have the training to treat early stage bladder cancer. Oncologists are usually brought in for muscle invasive or metastatic bladder cancer cases.  Most cases of early stage high grade BC patients will be recommended to do a regime of either BCG or a chemo agent. BCG is still considered the gold standard for for high grade bladder cancer. Other treatment options are considered if a patient cannot tolerate BCG or there is a shortage of BCG in their area. One of the newest alternatives to BCG is the combo treatment of Gemcitabine and Doxetaxcel.

    Waiting for pathology results and next steps is probably the hardest part of this journey.  And yes, many urologists are not known for being good communicators.  My suggestion would be after the second TURBT ask about next steps.  Ask about whether the uro’s office will call you or do you call them. Your discussion may be just over the phone or an actual office visit.  Pathology results are generally available about 10 days post op but patients sometimes wait longer to hear based on how busy the uro is.  This is a nuisance as we are always impatient to know what is happening for us but it is the reality for a lot of us.

    Some urologists will recommend a patient have an instillation of chemo in the bladder immediately post TURBT, others do not do that.  Some uros will recommend back to back TURBTs as in your case, others don’t.  It usually depends on the patients situation. Studies have shown that a second TURBT often prevents recurrences.  Some uros will recommend a second TURBT if they want to reconfirm the original pathology or they didn’t get a good muscle sample with the first surgery.  It is necessary to get a sample of the muscle wall along with the tumour so that the pathologist can determine if the cancer is muscle invasive or not.

    For my first two TURBTS, it was single TURBTs only followed by BCG.  That was in 2008 and 2010. The third surgery in 2022 was performed by a different uro because my first one retired.  That was after 12 years clear.  My current uro put a single instillation of Epirubicin (chemo) in my bladder immediately post op thinking that it was quite possible that was all I was going to need but we got a surprise diagnosis of CIS which is more aggressive that the usual cauliflower type tumours called urothelial carcinoma, so he recommended BCG as well. I did not complete that last recommended regime of BCG due to side effects and am on a watch and wait 3 month cysto check to determine next steps.

    BCG treatments usually start 4-6 weeks post surgery.  Your bladder needs time to heal first.  If you have the BCG immediately post op it can cause a body wide systemic infection which would not be pleasant.

    The main good thing is once the tumours are out, you’ve been bought a bit of time and at the very least the cancer has been slowed down if not totally removed.  BCG and/or post op chemo bladder treatments are mainly given to help prevent the cancer from coming back because bladder cancer has a very high recurrence rate.

    As you have discovered treatment regimes for bladder cancer tend to be all over the map.  There can be many reasons for that – patient’s personal situation which includes having to take into consideration many factors including other health conditions, urologist’s personal experience and preference for certain treatment protocols, the treatment resources available in a patients region, the need to switch out to a different treatment protocol if the original one didn’t work or the patient had problems.

    Best of luck going forward and don’t hesitate to post questions.  No question is a dumb question.  Bladder cancer is a steep learning curve.  (((HUGS)))

    #47677
    Tana
    Participant

    Hi Curtis Gord ;

    Sorry to hear of the BC. That sucks.
    I got diagnosed with Ta hi grade NMIBC .
    I got mitomyacin sprayed in my bladder after the first Turbt on Sept. 2019.

    Second Turbt a month later and then the BCG started three months later which I just finished three years of in January 2023 and so far so good with all clears.

    All the best to you.
    Tana

Viewing 6 posts - 1 through 6 (of 6 total)
  • You must be logged in to reply to this topic.
Back To Top