New - TCC kidney lining

jww
jww Member Posts: 1
edited June 2015 in Kidney Cancer #1

I assume a short introduction is helpful.

Im 40 years old. Around the end of April I had quite a bit of blood in my urine. This was the first time and it scared me. So we went to the er. They checked for infections and did an ultrasound. Both came back negative. They started throwing around bladder cancer and told me to see a urologist soon.

Two days later I was at the urologist. He scheduled a CT and cystoscopy. The CT report showed highly suspicious for transitional cell carcinoma in the kidney. The dr cancelled the cyctoscopy and rescheduled a ureteroscopy and biopsy instead. I went through the ureteroscopy and left with a stent. The first 3 days were the worst pain I've ever had in my life. I've crashed dirbikes, had pins in my hand and various other injuries but nothing has compared to the 40 minutes bladder spasms i had the first couple days.

We met with the dr yesterday and discussed the pathology results. It is positive for low grade transitional cell carcinoma in the kidney lining. Im scheduled to have robotic radical nephrectomy on 7-16. He chose to wait a few extra weeks because he wants the biopsy area to heal. Apparently the location of the biopsy/tcc was difficult to access and he had to beat me up pretty good to get it.

Im not depressed or anything like that right now. I kind of see it as a best case scenario for an internal cancer. Also being being caught early, low grade and appearing to be contained helps. I was more fearful of bladder cancer. Im also aware that all wont be known until he's actually in there.

Thats my short intro. I look forward to going through the site and picking up some valueable information.

 

 

Comments

  • Dixidude39
    Dixidude39 Member Posts: 1
    #2
    TCC - I'm in the Minority

    I'm new to this site.  I'll turn 78 in 2 months.  I was diagnosed with bladder cancer in 2001.  It returned 6 times.  I had non-invasive bladder cancer called CIS (carcinoma in situ).  It's the type of BC that are flat cancer cells that spread one layer deep inside the bladder.  I was successfully treated with a classic biological agent that prompted my immune system to kill the cancer cells.  Recurrence #6 did not respond to the biological agent in late 2014, and in February 2015, my bladder was removed at M D Anderson Cancer Center in Houston, TX.  MDA Pathology reported that the cancer was confined to my bladder only, but one year later, cancer showed up in my R ureter and kidney.  MDA and Johns Hopkins urologists told me that I had TCC (transitional cell carcinoma) directly related to my bladder CIS.  I was told that only 5-8% of those who have CIS develop TCC of the upper urinary tract.  In July 2016, I had a nephrectomy in my home town of Richmond, VA.  My 6-month and 12-month CT scans were negative. However, because patients with kidney insufficiency (I'm now classified as CKD 4 with an eGFR of 27-29) should not have an IV contrast medium, the test provides less information.  So, at the 18-month followup, I will have a loopogram of my L ureter.  Contrast is injected into the ureter right before a CT, then is evacuated so that the L kidney is not damaged. I am at greater risk for cancer in my L ureter/kidney than most.  I am currently on a renal diet in which I limit intake of foods with high sodium, potassium and phosphorous.  I also limit type and amount of protein intake.  Dialysis is not a pleasant thought, but at least I'm doing my homework by visiting a DaVita dialysis center, taking their free "Kidney Smart" course, interviewing 2 acquaintances who are on dialysis, and reading.  I can do some things like diet and exercise, but ultimately it's in God's hands. 

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