I haven’t been really active on my blog in the last few months and that makes me sad. I had to take a break due to my health and trying to juggle working and taking care of my family as well.If you have been following my story, you may know that I have had a chronically high white blood count for the last couple of years. Low white blood counts are usually associated with lupus and the fact that I was having a HIGH count was puzzling, even for my rheumatologist. So imagine my shock when I was diagnosed with lupus AND kidney cancer.
I also for the same length of time had been having chronic blood in my urine. Of course my rheumy was checking my urine every 3 months at my visits, so they were definitely watching it closely. About 2 years ago I had been referred to a urologist to try and find the cause of the microscopic blood in my urine. He inspected my urinary tract with a camera and ran some scans on my kidneys. The found a kidney stone in my left kidney. I had never had a kidney stone in my life but it was not bothering me, so they left it.
Last years the stone finally made its way out and I made my way to being admitted into the hospital for a few days because of a bad kidney infection as well. That was a horrible experience and I now understand what people mean when they talk about kidney stone pain. I figured that would be the end of the blood in my urine…I was wrong.
In the spring of last year, I was referred to hematology in regards to my chronic leukocytosis. At this time, my WBC (specifically my neutrophils) were around 17,000 and would drop and rise, but was always considered in the high range.
They ran many tests checking for various things including cancer. It all came back negative and relatively normal…except for my white blood count. Flash forward a year later and my rheumatologist is concerned because I was still experiencing a high WBC. Recently, my WBC has gone up to around 23,000. So my rheumatologist referred me again to the hematologist. This time I saw a different doctor who was amazing. She listened to my issues (which are plentiful lol) and I told her I just was not sure what was going on…but something was because I felt so bad the last year.
She ran more tests and while some counts were off, most tests came back negative. She told me she wanted to run a CT scan of my chest, abdomen, and pelvis to at least rule out anything major. I went and had my CT scan with contrast. I had to drink a contrast before I had the scan.
Once the results came back, I was pretty shocked. She told me that the scans showed I had pneumonia which I didn’t even know I had. I took a course of antibiotics and am happy to say that it went away but I have had wheezing and breathing issues and am seeing a lung doctor at the end of this month.
Then they discover that I have a 3cm complex cyst on my ovary. Luckily, after 2 ultrasounds they were able to distinguish it as a simple ovarian cyst and that it would go away on its own.
Then they found a 2cm mass on my right kidney. On the report, it said “Can not exclude malignancy”. This terrified me. My hematologist then referred me a uro-oncologist. Once I met with him, he explained my scan results in detail and even showed me the mass. He told me that they were around 90-95 % sure it was cancerous from the scans alone, but the only way to know for sure was to take it out and wait for pathology.
At 32 years old, that’s not something you really expect to hear. My maternal grandmother passed way from kidney cancer when she was in her 40s. She was diagnosed in the early 90s and I was around 5 years old. So the fact that I had a family history made my doctor that more suspicious. He explained the possibility of it being a benign tumor but that in his opinion it needed to go either way. There are many reports online that indicate many doctors do not perform biopsies on kidney tumors because of the risk that it could seed and spread the cancer cells. Biopsy was never discussed in my case, so I am unsure of anything related to a kidney biopsy.
Kidney cancer is in the top 10 most common cancers in men and women.
At that first appointment, he scheduled me for a partial nephrectomy. He explained that do to it’s close proximity to a vein in my kidney that when they went in for surgery, they may end up having to take the whole kidney instead of a part of it. They also mentioned they may end up having to do a full open procedure because I had previously had my gallbladder removed as well.
My surgery date was scheduled for 6 weeks later and I was extremely nervous. I have had surgery plenty of times in the past, but this one terrified me. I was unsure what I would even wake up to and the wait for my pathology report to show if it was indeed cancerous.
The surgery itself lasted around 3 hours. Of course I was completely put to sleep for the procedure. I will not lie when I say it was a pretty rough recovery. I honestly feel like I underestimated the actual pain that I would have, due to my nerves being so frazzled because of the surgery itself. I slept sitting straight up for a week. I thankfully only had 6 small incisions spanning across the right side of my abdomen. Luckily, they only had to take a part of my kidney with the tumor. I was really concerned if I was left with one kidney due to having lupus and kidney cancer.
Pathology came back and I found out that I had Stage 1, Grade 2 Clear Cell Renal Cell Carcinoma. Thankfully, it was only Stage 1 and that it was contained to my kidney itself. It had clear margins so they were able to get the cancerous cells completely out. I have never felt so lucky in my life. It has a small chance of recurring because it was caught early and because of the grade. I will have to get many scans in the next few years to keep monitoring to make sure that it does not come back.
According to Medscape,
Clear cell renal cell carcinoma (CCRCC) is a renal cortical tumor typically characterized by malignant epithelial cells with clear cytoplasm and a compact-alveolar (nested) or acinar growth pattern interspersed with intricate, arborizing vasculature.
The American Cancer Society estimated that about 73,820 new cases of kidney cancer (44,120 in men and 29,700 in women) will occur in 2019. It is believe that most people diagnosed with kidney cancer are around 64 years old. It is pretty uncommon in people under 45 years old, but being 32 years old, I can tell you it does happen.
Kidney cancer is in the top 10 most common cancers in men and women, although it is more common in men.
While having cancer was terrifying, I honestly couldn’t help but think what if I didn’t have lupus? I never would have been monitored the way that I am with my rheumatologist. It was not there a year ago when I had numerous scans on my kidneys for my kidney stone. I probably never would have pushed for any more scans, even though I constantly had flank pain in both of my kidneys. I feel thankful and so lucky to be able to still be here for my children.
Its been about 3 weeks since I had my surgery and am happy to report that I have healed up pretty nicely and am no longer dealing with any significant pain related to this kidney cancer surgery. I will be getting genetic testing done due to the fact of family history and my age. I have a follow up with my doctor soon and will know further about the scans I will start getting and where we will go from here. I will also be having a bone marrow biopsy soon to further research the cause of my high white blood count.
I was curious to see the statistics on those with lupus and kidney cancer. I wanted to know if there was any sort of link between the two or if it was purely genetic in my case or neither. I will definitely update you guys once I get my genetic testing. Anyone else have a history of lupus and kidney cancer?