Probable RCC. What questions should I be asking?
This is a long one, so thanks in advance for reading 🙂
I’m a 50-something female with a long medical history. The highlights are multiple autoimmune diseases, history of thyroid cancer, multiple GI surgeries/ issues and stroke. As a result, I have a LOT of “ists” in my contacts. My kidneys have always worked well and the only issue I recall is very small stones on my right side several years ago.
About 20 days ago I saw blood in the toilet. I had a radical hysterectomy 4 years ago, so I was able to quickly asses where the blood was coming from. I went to Urgent Care because even though I wasn’t having any UTI symptoms, there was a lot of blood. Dipstick showed large amount of blood and no infection. Culture came back negative. I was able to get in with Urologist right away. He ordered a cystoscopy. Nothing obvious in my bladder (that’s a rant for another time). Sent me home with instructions to apply estrogen cream for a month and then see him in office in a month. Bleeding temporarily stopped, but then returned with a vengeance, including small clots and leaking without urine. I was able to get in to a different urology practice later in the week. In the meantime, I became anemic from the blood loss. My hematologist ordered more labs, an iron infusion and a urological ultrasound. I then saw the new urologist who immediately diagnosed caruncle. She sent urine out for cytology and ordered uro-CT. Here’s where things start to get a little tricky. 95% of my providers are part of the university system. The 2nd urologist affiliates with a different system and they send their patients to independent imaging clinics. Last weekend I developed extraordinary pain and pressure in my sides and lower abdomen/pelvis. I went to the ER and they were able to fix the pain and nausea. They did a regular CT, even though I told them I had a uro ct on order (again, a rant for another time). The CT didn’t show anything. On Monday I went to the hospital affiliated imaging and had the ultrasound. It hurt a lot when she started on the right side, and not at all on the left. Within 30 minutes after the test was done, I got the results. 1.5 cm irregular solid mass on right kidney. My hematologist called me and ordered an MRI, that I could wait to schedule based on the uro ct coming up. Wednesday I went to independent imaging clinic for uro ct. I’ve had a LOT of contrast imaging, and this was the first time that I felt the contrast in my kidney. When the test was done, they told me it will likely be 5 days until my dr gets results (Thanksgiving week). They did burn me a disc of the images. I recognize that I have a significant lack of patience… I decided to schedule the MRI within the hospital so I can get results right away. They were able to get me in tomorrow (Sunday). I loaded up the disc and could easily see the spot. I’m assuming MRI will confirm the spot needs to be addressed. If yes, I was planning to ask hematologist (or primary) to refer me to uro-oncology at the university. What else can I be doing to educate myself in order to self advocate? I’m still experiencing pain, but it’s manageable at home and the bleeding has reduced significantly. Should I be suspicious of the caruncle? Do I insist on uro oncology consult and not just urology? I’m not looking for specific medical advice, but all suggestions for things to ask about or consider are appreciated!!
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