Bladder Tumor Free

jharmonlw
jharmonlw Member Posts: 5 Member
edited September 2022 in Bladder Cancer #1

After being diagnosed with "something in your bladder" in 2005, I had three recurrences about every two years thereafter, for a total of eight tumors removed. Six out of the eight were malignant. My last two TURBTs occurred in 2009 and 2012, followed by intravesical treatments with Mitomycin-C. I assume I haven't had further recurrence, since there haven't been the telltale symptoms: extreme hematuria with a burning UTI. My weight has been sporadic but not drastic.

For several years, medical insurance has been inconsistent, so I haven't kept up my yearly checkups. I was denied insurance twice, even though it was against the law.

Now that a dear friend has been diagnosed with ovarian cancer, I am feeling the need to make sure I am tumor-free. While my diagnosis was Early Stage Transitional Cell Carcinoma or Superficial Bladder Cancer, one never knows. In the meantime, I wonder is there anyone out there who has been in remission for five or more years?

Comments

  • 3GKIDS
    3GKIDS Member Posts: 5 Member
    edited April 2021 #2
    I have the same low grade

    I have the same low grade urothelial carcinoma (bladder cancer) though mine is in my renal pelvis. Can you please tell me your experience with treatment with Mitomycin-C.  I am to undergo this but with a form called Jelmyto, which is Mitomycin C, liquid form until it gets in your kidney and it turns to a gel.  Did you have any side effects.  Thanks for your time.

  • jharmonlw
    jharmonlw Member Posts: 5 Member
    edited May 2021 #3
    3GKIDS said:

    I have the same low grade

    I have the same low grade urothelial carcinoma (bladder cancer) though mine is in my renal pelvis. Can you please tell me your experience with treatment with Mitomycin-C.  I am to undergo this but with a form called Jelmyto, which is Mitomycin C, liquid form until it gets in your kidney and it turns to a gel.  Did you have any side effects.  Thanks for your time.

    I'm sorry I didn't get back

    I'm sorry I didn't get back to you sooner, as I haven't been visiting the site often. And I didn't think I'd ever have reason to visit more frequently. Mitomycin-C was a bit harsh on my bladder, causing irritation of the lining, burning urination, and hematuria after surgery--painful UTI symptoms. I suppose it worked well for 9 years. At the last instillation in 2012, the side effects lasted for almost two months, and my urologist suggested we would use something else next time. Of course, I didn't expect there would be a next time. However, I am shocked to report that I was diagnosed with a fourth small tumor recurrence just five days ago. It looks like we caught it during a followup, before there are any symptoms besides having to pee all night. The blessing in catching these tumors way early is they don't get to spread. But here we go again. I say, the instillation of chemo into the bladder is far kinder than intravenous therapy, although it could take a couple of rounds. My current urologist is going to try a different drug this time, one starting with a G--I wasn't paying much attention once I saw malignant cells on the screen. I will update you on it and the side effects in about two weeks, after the surgery. Hang in there, 3GKids! Eat healthy, stay active, laugh, and enJOY life!

  • jharmonlw
    jharmonlw Member Posts: 5 Member
    edited June 2021 #4
    5th TURBT Update

    I had surgery on June 3 for Cystoscopy w/Transurethral Resection of two small papillary tumors and Cystoscopy w/Chemotherapy Instillation after resection. Meanwhile, a third flat tumor of 3cm, which hadn't shown up during cystoscopy was found and removed. Chemo was not administered, in case it turned out to be a high grade CIS/in situ, which would be treated with BCG. However, the biopsy confirmed it was of the same low-grade cells as the papillary growths, so neither chemo nor BCG was instilled. I had a catheter in place for 10 days to allow my bladder to heal properly, and it seems to be doing so nicely. I expect to return to work in another week, and to have a follow-up cystoscopy in September. 

  • br_bernardo
    br_bernardo Member Posts: 23 Member
    #5
    jharmonlw said:

    5th TURBT Update

    I had surgery on June 3 for Cystoscopy w/Transurethral Resection of two small papillary tumors and Cystoscopy w/Chemotherapy Instillation after resection. Meanwhile, a third flat tumor of 3cm, which hadn't shown up during cystoscopy was found and removed. Chemo was not administered, in case it turned out to be a high grade CIS/in situ, which would be treated with BCG. However, the biopsy confirmed it was of the same low-grade cells as the papillary growths, so neither chemo nor BCG was instilled. I had a catheter in place for 10 days to allow my bladder to heal properly, and it seems to be doing so nicely. I expect to return to work in another week, and to have a follow-up cystoscopy in September. 

    Thanks for the update!!

    Glad to hear that you should be able to return to work in another week!

    Prayers for your well-being and peace!

  • jharmonlw
    jharmonlw Member Posts: 5 Member
    #6

    Wow! All this seems so long ago. I experienced a recurrence at the end of 2021, had another TURBT in January this year, and am on my 3rd round (maintenance) of chemotherapy with gemcitabine. I feel fine. I hope you are doing well.

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