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Is this normal?
After having hematuria on and off for about a year, my doctor ordered a CT scan around early May of 2023, which was read as normal. I did have a stone in one kidney and the hematuria was attributed to that, though it hadn’t moved from previous scans. I’d had a heart attack in 2017 with a stent placed in my LAD for a 99% blockage. Right around the time of the CT, I ended up having another heart attack due to failure of the stent and had emergency catheterization with a stent placed inside of the previous one. Probably due to the blood thinners, I began having more frequent hematuria and within a few weeks was hemorrhaging which ended up with my being unable to urinate due to clots blocking the urine flow.
It was unlike anything I’d ever seen or heard of and I’ve been in the medical field all my life (49 yo now). I was taken emergently to the OR for a TURBT after being seen by a urologist who flushed my bladder and while doing so, spontaneously said, “There’s the cancer,” after putting the scope in. I had no inclination that could be what this was until that moment. I was rushed to a hospital and taken straight to the OR. This was complicated by the blood thinners that I could not be taken off of, but I had no complications and other than lots of bleeding with the catheter, I recovered well. My concern is that an NP who worked for the surgeon saw me in the hospital once and then I was told at discharge three days later I needed follow up cystoscopy every three months or so.
That was all I was told. Nobody counseled me or my husband or explained anything further. I did read in a discharge summary that a PET scan was recommended. I removed the Foley myself and was seen by my family doctor and cardiologist for follow up. About two weeks later, I was called by the surgeon/urologist who told me it was low-grade noninvasive papillary carcinoma and that it rarely recurred and to call his office and schedule an appointment for 3 months from then. Of course, I read a lot in the meantime and wanted to see what others experienced with this. My doctor had called to get the pathology report also and in response, this urologist called me and sharply asked why my doctor was calling for that because he’d already TOLD me what the result was.
I was really confused about his response. I did go to the follow up 3 months after and he very hurriedly shoved the cystoscope into my bladder and said I was okay. He was in the room less than 5 minutes, literally. I have not made another appointment as of today because I was so uncomfortable in so many ways with how I was treated. Should I have been given the option of intravesical therapy? Should I have been counseled as to what to expect? My mom and daughter-in-law both passed from cancer within the last few years and both within three months of diagnosis, so this is very scary for me. I am going to be scheduling an appointment for follow up today, but I want to be able to state what I need clearly.
Should I have options here? I did ask him about the PET scan and his response was that he didn’t make that recommendation, and I said no, the hospitalist had and he said, “Well, he isn’t a urologist, is he?” Can anyone give me some advice on how to go forward? Thanks in advance and really glad to have found this forum.;
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2 Replies
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Wow! What a process you’ve been through. My experience with my urologist has been completely different.
I was referred to my urologist directly from the ER that found my tumor through CT scan. I’m lucky that my urologist is a very skilled very compassionate man. My first appointment with him was for my cystoscopy and he explained everything he was going to do. He went through my CT scan with me, showing me all the parts of my urinary system. During the cystoscopy, he allowed me to view the video and explained everything very clearly to me. Once he saw my tumor, which had a very large blood clot on it and was bleeding at the bottom, he scheduled my TURBT surgery for two days later. After my surgery was over, he came into my recovery and explained what the next steps would be. Six weeks of healing and a follow up Cystoscopy with some kind of treatments to follow. I had done a lot of research during my waiting time and knew a little bit more about what he was talking about. Definitely in my opinion, you should’ve had a lot better treatment and especially a lot better explanation of what was going on. No doctor should be offended When you want information shared with your family doctor, Or decide to get a second opinion. It doesn’t hurt to look around and find someone who will treat you much better in the future. Trust in our medical providers is key to our emotional and physical healing.
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If it is a small ( < 3cm), papillary type tumor, and low grade, it is considered low risk for progression and recurrence. Even if a recurrence happens, the tumor will be low grade, which is not life threatening. So, for low risk, American Urological Association’s Guidelines recommends TURBT to remove the tumor and follow up with regular cvstoscopy without any treatment.
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