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Homepage – Forum Forums Non-Muscle Invasive Bladder Cancer Nonmuscle invasive bladder cancer with cancer now in lymph nodes

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  • #39466
    coliver52
    Participant

    I have been told by my uro-oncologist this week that I have cancer in one of my lymph nodes. I was diagnosed last December with a T1HG tumor into the lamina propria which was resected in January of this year. I also have carcinoma in situ. I had 6 rounds of BCG in May then received the news that I still have carcinoma in situ, which as you know is among the most aggressive and progressive of NIMBC tumours. Anyhow I am SO puzzled by what my oncologist has now said is my treatment plan.

    Having done a cytology and scan on me two weeks ago, he is now going to do another cytology, then another biopsy, then another two sets of BCG. Here is my question: isn’t it true that BCG can only target cancer IN the bladder? Not the lymph nodes, which I have assumed can only be cut out through surgery? I have told my oncologist I am ready to have a radical cystectomy and I am even more impatient for bladder removal now because they cut out some surrounding lymph nodes as a precaution when they do the rc. I am now terrified my cancer will spread even further while they are spending months targeting treatment to my bladder but not my lymph nodes. Does anyone have any thoughts on this? Thank you so much.

    #39474
    marysue
    Participant

    Hi coliver52:

    I’m sorry to learn that you have cancer in the lymph nodes as well as dealing with cancer in the bladder.  I’m not a doctor so I can’t give specific medical advice but it does seem to me that something isn’t right here.

    Someone can correct me if I’m wrong, but I too, am of the understanding that BCG can only treat the inner surface of the bladder so if that is the case and you have cancer in a lymph node it would seem prudent to me that something else needs to be done in terms of treatment.

    Since you have a lot of concerns about this urologist’s treatment plan my suggestions would be:

    1) Have one last conversation with him to confirm what you have learned over the last couple of weeks with what your uro believes your situation to be and what the proposed treatment plan is as listed above or anything else. I would also make double sure that the lymph node does actually have cancer in it and it not just swollen in response to the BCG treatment.  BCG does cause an immune response as it is an immunotherapy drug.  Our lymph nodes are the among the first things to respond in fighting infection.

    2) Ask if an RC is a suitable alternative treatment option for you – emphasize your fear of the cancer spreading etc.  If he says no to the RC option, ask why. There may be some things he has not told you or you missed hearing at another consultation.

    3) If you still feel that his proposed treatment plan is not the best for you, you are free to ask for a second opinion. We have that right as patients.  Ask him for a referral to get a second opinion.

    Hope this helps.  Best Wishes.  (((HUGS)))

    #39480
    coliver52
    Participant

    MarySue, your response is extremely helpful and solidifies all those niggling concerns I have experienced with my uro-oncolgist. I will reach out to him one last Time and give him a chance to clarify why he I suggesting what he’s suggesting. In fact I will try to follow the last three suggestions you offer in your feedback. Everything you suggest makes total sense. Thank you!

    #39481
    marysue
    Participant

    Hi coliver52:

    You are very welcome.  Please let us know how it goes.  (((HUGS)))

    #39484
    Rick B
    Participant

    Hi coliver52,

    I’m glad you reached out to BCC and wish you the very best outcome. Like Marysue I have no medical background.

    I cannot add much to what Marysue has suggested relative to follow-up questions with your uro. I too had CIS with low grade BC. I had 2 recurrences of the low grade but not CIS. My third round of BCG treatments included “interferon alpha” which some regard as a protocol in treating superficial bladder cancer. When you speak to your uro next time you may ask if this is an option for you. I see my uro annually (cysto and cytology) and fortunately I have been all clear for 7+ yrs.

    It would seem appropriate too that your uro shared what lymph node(s) have been affected and how it was confirmed.

    Again, best wishes…keep us in the loop.

    Stay positive…stay strong!

    Rick

    #39485
    coliver52
    Participant

    Thank you for the kind wishes and wise words. I continue to learn a lot on this great site. I shall definitely ask about the location of the node. Also I have not heard of interferon alpha. Learning new information on this journey is somehow empowering. Thank you again Rick!

    #39488
    Nightingale
    Keymaster

    Hi Coliver52,

    I would definitely follow up with your uro-oncologist.  Every patient is different and therefore treatments vary, but treating a lymph node with BCG, does not make sense to me.

    After reading your description, I believe the BCG is to treat the cancer in the Bladder as there is no indication that the Bladder Cancer has been eliminated.

    I would also check with your family doctor and review the treatments and find out what is going to be the treatment to address the lymph node.

    Like the others on this thread, I am not a medical doctor, but following the logic, I believe my hunch is correct.

    All the best,

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