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I Never Heard of Bladder Cancer Until…

The first week of May 2018, I had blood in my urine and went to the doctor and left a pretty pink specimen. Two days later I got a call from my doctor saying they had ruled out a UTI and he was sending me to get a CT Scan. I had that the next week and was told I would hear from my doctor “tomorrow”. Three hours later I got a call from my doctor asking me to come in to see him. He told me the scan showed I had one large and two small tumors in my bladder. I asked him what were the chances they were cancer and he told me they probably were….most of them are. He was sending me to a urologist and they would call to make an appointment.

My imagination was running wild

A few days later they made the call but the appointment wasn’t scheduled for another month. Up to this point everything had happened very fast but now I had a month for my imagination to run wild. I was sure the urologist would tell me they were cancer and he was sending me to an oncologist and that would take another month to get an appointment. They would take another month to decide how to treat me and then I would have chemo and radiation and lose my hair and be sick and we couldn’t go on the cruise we had scheduled in the Fall.

Diagnosis then surgery

The day finally arrived and the urologist told me it was cancer, the non-invasive kind, he would take care of everything, and I would have surgery soon. It was such a relief. Three days later I had the surgery. I got along fine. I didn’t even have to have a catheter. Next week, I had the post op appointment and found out the pathology report showed he had to repeat the surgery and go deeper. I was upset. For some reason I thought it would be over after the TURB.

Trying BCG

A few weeks later, I had the six week series of BCG. I didn’t feel well, I had urgency problems and it was generally a hard six weeks. We went on the cruise and I had the scope after returning. The scope showed I had three new tumors. The BCG had failed. He said BCG had an 82% success rate but it didn’t work on me. I had another TURB. He decided to not do a treatment and see what happened at the next scope in February. We were both shocked to see that I had 8 tumors. So I had another TURB.

Next, Gemcitabine

This time, he had me have a six week treatment of Gemcitabine, a chemotherapy drug. This couldn’t be done in his office like the BCG, I had to go to the Tumor Institute. Although the appointment took a lot longer, I got along a lot better with the Gemcitabine. I had another scope in June and it showed a tumor and three suspicious spots: another TURB. We discussed my options and since the two standard treatments had failed, we would try a Clinical Trial if I qualified, and he found I did qualify. I got an appointment with them.

Pressure is off?

However, the pathology report showed these tumors were benign. It was the first good news I had had in a year. I cancelled my appointment. I have another scope in October and if that is all right I will start the maintenance program with Gemcitabine. I feel like the pressure is off for a little while.

What is your treatment experience?

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Comments

  • Gina
    6 days ago

    Oh Gloria, that is terrible. I’ve been lucky in comparison.

  • Mac Howard moderator
    3 months ago

    @GloriaBell,
    So happy for the good news! Cancer can certainly be a rollercoaster ride. It sounds as if you are keeping a positive outlook and I look forward to reading more of your journey. I suggest staying connected here and anywhere else you find supportive people to help along this path.
    Best wishes
    Mac (Site Moderator)

  • naydajp
    3 months ago

    I consider myself a healthy woman…but I too never had heard of bladder cancer. I can relate to your story…I’m on Gemcitabine too. My first dosis was yesterday and although the Hematology Center, doctor and technicians and fellow patients were super and very enthusistic, at the end of the day I began to feel very depressed. I found this website and felt relieved. Your first sentence can be mine too. Thanks for sharing.

  • Sarah Wallin moderator
    3 months ago

    @naydajp – you aren’t alone on this one – many people have said they never heard of bladder cancer before diagnosis either. Check out the 3rd poll in this article (https://bladdercancer.net/living/how-diagnosis-journey-compare/). When is your next Gemcitabine treatment? It may be worth mentioning to your care team if you continue to feel very depressed. It is a lot to go through. I’m glad this site has given you relief. Thanks for being here, and keep in touch. And know that we are here to support you along the way -Sarah (BladderCancer.net Team Member)

  • GloriaBell author
    4 months ago

    Thank you. Yes it was a hard year and I really envied those who got to go on maintenance after their first BCG treatment. Finally I heard those words No Evidence of Disease.

  • naydajp
    2 months ago

    Thanks for your comment!!! And Blessings to your Health!

  • Sarah Wallin moderator
    4 months ago

    Hi @gloriabell – Thank you for sharing your story. It sounds like you’ve been through a lot since your initial diagnosis. It can be a long road regarding treatment and scopes. I know many others here can relate.

    That’s wonderful your most recent pathology report showed your bladder tumors were benign. My fingers are crossed for your next scope in October! Keep in touch,
    Sarah (BladderCancer.net Team Member)

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