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This week, I finally had the appointment I had been waiting for, my first post cancer scans. Since having a kidney tumor and a small part of my right kidney removed in November of 2019, I have been anticipating this scan for a variety of different reasons.
First, obviously I wanted to make sure that my Clear Cell Renal Cell Carcinoma was not back. You may have heard the term “Scanxiety” used before and let me tell you, it’s a real thing.
I went and saw my awesome uro-oncologist and am happy to say that my CT scans did not show any recurrent cancer in my kidney or elsewhere. To hear that is indeed a relief!
As you can see in my CT scan results, everything was pretty normal on my scans except the findings that my liver is enlarged and they believe I now have Fatty Liver Disease. I was told it is pretty common and that drinking alcohol, being overweight, diet and exercise could all play a part in its development. I barely drink alcohol anymore due to the meds I am on, specifically Methotrexate.
So, that leaves the food I eat and my [lack of ] exercise routine and chubbiness as possible causes lol. Its definitely not funny per se, but just another addition to my plate. I laugh because it’s a coping method and truth that I need to get my shit together and take care of the things that ARE in my control and my diet and exercise routine are definitely part of that.
My doctor was not too concerned with it at the moment, but said that it is something that they will watch for sure on future scans. Of course, I feel I am more concerned about it and it has really initiated a drive in me to really get my eating habits under control. I have to find a way to ensure that I am eating as healthy as possible while also making time and a way for me to get some exercise in daily. If it were easy, I wouldn’t be in this predicament today. Having lupus makes it difficult to really do any high impact exercise, so I am hoping to begin my journey with light walking.
At this appointment, we also went over the results of my Genetic Cancer Screening. I had already met with my genetic counselor virtually a few weeks ago to go over my test results. I am also happy to state that all of the genetic tests that were tested, I came back negative for all of them. I will be writing a separate post in more detail on what my genetic cancer testing experience was like soon.
My genetic counselor informed that I should retest in a few years in case there are more research breakthroughs for genetic markers for my clear cell renal cell diagnosis. I feel that this may truly be the case in my situation, as I just find it too coincidental that my maternal grandmother passed away from kidney cancer in her 40s.
My uro oncologist believes that smoking plays a significant role in my personal cancer, as that I am a female and young [although at 33 now, I don’t feel young LOL]. I have successfully quit smoking a few times in the past, only to fail and start again. I am DETERMINED to finally quit once and for all, but it is definitely a hard battle. Especially as someone who deals with chronic anxiety. Hey, I never said I was perfect…just a real live lupus warrior trying to make it in life.
Yet, really do I have a choice at this point? I MUST learn to change my ways as I have been given so many chances with my health. I like my uro-oncologist because he is a personable doctor but he is straight to the point. So while I hate to admit my smoking issues, he knows that it is something I need to work on for my own health and I appreciate his honesty and directness.
If you have followed my blog, you probably know that I have had an issue with chronic hematuria. I have had microscopic blood in my urine for the past few years and there has never been a direct cause to these abnormal urine samples. In 2017, I had a Cystoscopy done to see if they could find a reason for why I kept having blood in my urine.
I did NOT have a great experience with that procedure LOL. It was with another urologist and I felt he lacked a lot of bedside manner, including explaining exactly what the cystoscopy entailed. While it was a quick procedure, it was uncomfortable and was quite painful to me personally. I also bled for about 2 days afterwards and experienced burning during urination, much like how a bad UTI would feel.
At my recent appointment, my new uro-oncologist suggested we do a quick check to make sure that everything in my bladder looks good and to see if there was anything else to rule out in regards to my chronic blood in urine. I explained my past experience to him LOL, and he promised that he would be gentle and the nurse explained the whole thing in detail.
I am booked for this procedure in a couple of weeks and am hoping they can finally find a cause to the chronic blood in my urine. Originally I was told it was possible it was from a kidney stone after that first cystoscopy, but that stone stayed put until the fall of 2018. I then had noticeable blood in my urine and ended up hospitalized with a bad kidney infection as the stone was making its way out. I thought that would finally solve the chronic hematuria mystery, but the blood continued in almost every single urine sample I had done.
A year later, is when my kidney tumor was discovered and I felt like this would be the cause of the blood. But I have had about 6 urine tests since and all have still contained microscopic blood. With my most recent urine test, my rheumatologist actually sent it off for a culture to make sure there was not an underlying infection, but they found nothing but normal cells and bacteria. Nothing they considered too alarming and was asked when my next uro appointment was. This was a few weeks before my scans, so they decided to let me discuss it further with my specialist.
So as my lupus journey continues, there are still so many health mysteries to be unravelled for me personally. I am still unsure about the chronic high white blood cell count they believe is reactive to lupus or the chronic hematuria that is always blamed on other issues. I feel as though we are all missing something .
Maybe that’s the anxiety many of us chronic illness warriors face. We know what it’s like to go through years of not understanding what is happening to our bodies, years of being dismissed by doctors, or not having our questions answered well enough. I believe that all that past medical trauma has led me to a certain distrust of doctors and the fact that they may not take me seriously. Yet, I do not allow those feelings to stop me from asking questions.
It is important for us to always ask questions if we do not completely understand scan results, test results, or procedures. We truly are our own best advocates and I believe that our voice is the most powerful tool when it comes to our healthcare and well-being. I have lucked out with the doctors I have now because I truly believe they treat me with dignity and respect and are never annoyed with my questions and even questioning their answers lol.
They are awesome and I know it’s not an easy job for them, but I truly am SO thankful to have such a great health team taking care of me. It’s a luxury not afforded to most, and I know because I have been that patient in the past. I wish that every patient could have a great relationship with their doctors because it is so vital for chronic illness patients to know the most up to date information about their health.
I will update you guys in a few weeks if they end up finding anything after my Cystoscopy. Until then, stay strong and keep fighting!