Bladder Tumor

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StayingHopeful
StayingHopeful Member Posts: 2 Member
edited June 2022 in Bladder Cancer #1

I'm new here as I had a cystocopy on Tuesday and it revealed a tumor. I have surgery scheduled on June 7th to have it removed and sent for pathology, so I don't yet know the diagnosis. I'm in my early 40s and don't know what to think about all of this. I am trying not to let my mind think negatively since I don't have any answers at this point. However, I can say that I am angry at my doctors over the past few years. I have had UTI like symptoms and have had blood off and on in the urine for 2.5 to 3 years, but any time I am tested my results came back negative for a UTI. I was never referred to a urologist and no one looked further into my symptoms even though the symptoms have been getting progressively worse. It took a trip two months ago to Urgent Care after two weeks of burning pain and another negative UTI test to be referred to a urologist with a potential Interstitial Cystitis diagnosis.

I am quite certain I have had this tumor since at least August 2021 as I peed blood for an entire day, but it may have been growing longer since I've been experiencing UTI like symptoms for over two years. Did anyone else have a similar experience and what was the outcome?

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  • barehead
    barehead Member Posts: 40 Member
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    At about age 50, I experienced a small amount of hematuria at the end of my voiding and my PCP treated me with antibiotics. This went on for six weeks and still had hematuria, so my wife said time to go to a Urologist. At my cysto, urologist found some tumors. At the following TURBT procedure, the tissue he removed was Stage 1, Grade 3. I went through two immunotherapy cycles, one with BCG, and the second one with BCG and Interferon. These took care of it.

    Suggest that you visit Bladder Cancer Advocacy Network (at bcan.org) for tremendous medical information on bladder cancer. It has clear information on stages/grades and treatments. Once you have your pathology report back (and please get a copy of it for yourself, it is extremely critical), it will be the basis for the treatment plan that your provider will suggest for you.

    Now to be transparent, here is the rest of the story. Make sure that you religiously get follow-up urology checkups at regular intervals, since bladder cancer has a high frequency of recurrence. For 16 years I had clear annual checkups. Then my urologist found some abnormal areas that turned out to be Stage 1, high grade, along with some CIS. I did the induction course of BCG, and then Covid hit, so it was impossible to get a surveillance procedure. After a nine week delay, I follow got one at a NCI hospital. It found the same pathology result, but was climbing up one of my ureters. The treatment with the highest probability of success at that point was bladder removal, which I had done in July, 2020.

    Everyone's journey is different, so do not extrapolate mine to yours. Having anxiety awaiting procedures, tests and scans is very normal. I filled that waiting time with learning as much as I could about this disease, and was able to have good question and answer sessions with my providers at each step in my treatment. I am now back to traveling with my wife, spending time with our grandkids, and awaiting some more grandkids.

    Every success on your journey. Also, do not overlook the support resources that are available at the facility at which you are being treated. There is typically profession support persons as well as support groups for patients and caregivers that can provide tools for coping with the emotional roller coaster that can come with this journey. They are there for the sole purpose of helping folks in a time of need.

  • StayingHopeful
    StayingHopeful Member Posts: 2 Member
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    Thank you for letting me know about your experience. It's great your wife had the wisdom to urge you to see a urologist. I wish I would have known to see one sooner than I did, but I am glad the one I have now scheduled a cystocopy right away once she heard my symptoms.

    I did check out the bcan website, which has been very helpful. It took about a week for the news to really sink in and for the anxiety to hit. However, I try not to stay too long in the negative space. My urologist told me today in my pre-op appointment that she's hoping it's superficial and it can be a one and done situation. I will be praying so.