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Thread: Possible Bladder Cancer - Very Frustrating

  1. #1
    Newbie New User
    Join Date
    Aug 2019

    Possible Bladder Cancer - Very Frustrating

    About 9 months ago I had what I thought was a very bad and quickly progressing UTI. I went home from work and within a few hours, I passed a handful of blood. I felt better almost immediately. I was referred to a urologist who did a full Hematuria workup (CT w/ contrast, cystoscope, etc). Nothing was found (blood in urine, but no infection) so he said to come back 6 months later.

    I ended up waiting about 9 months and still hadnít gone for my follow-up when the whole thing happened again. Urgency, agonizing pain, burning, then I passed a blood clot and started to feel better again. I went to my urologist the next day. I still had blood in my urine (same as before) but this time did have a UTI. Still, he ordered another CT and a white light cystoscopy. Both tests came back clear, my kidney function is good.

    After both him and his NP telling me that nothing could cause my symptoms except bladder cancer (neither of them think it is kidney stones), when he got done with the cysto this morning, he literally said ďwell, letís just hope it doesnít happen again.Ē

    I requested a fluorescence cystoscopy and he said there was no need for one. Am I crazy? Am I wrong to keep pursuing this? Right now, he wants me to come back in 6 months so they can take another urine sample and spin it up to make sure there arenít any cancer cells in it.

    I feel like he thinks I have cancer, but he canít easily see it, so he wants to put me off until itís so bad he canít miss it. Or maybe iím just paranoid. Iím not sure. Iím sorry this is so long, thank you for reading. Any insights or tales of similar experiences would be greatly appreciated.

  2. #2
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Sorry your worries have brought you here. First, UTI's can cause symptoms you described and some people are prone to recurrent ITI's. It does sound like your GP has done testing and nothing at this point in his medical qualifications is pointing to cancer. I have never heard of a physician that "thinks" it's cancer but yet does nothing.

    Since you have little confidence with your current physician. perhaps seek another for a second opinion.

    We are not doctors and guessing on random symptoms is not what we do. Just about any, simple or not symptom, if you Google, will point you to the worst case scenerio. For your peace of mind, either discuss your concern with your current doctor or look for another.


  3. #3
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    The time to think "cancer" is after proper diagnosis has run it s course; when all else has been eliminated; when a second opinion has been received; and if appropriate, when a biopsy sample of your tissue has been taken, subjected to scientific scrutiny and the pathologist has determined that malignant cells are present.

    I would counsel that, rather than think cancer, simply persevere to determine what the problem actually is. Bear in mind that some conditions are never diagnosed and many resolve on their own.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.


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