Stage IV Kidney Cancer, INOPERABLE, Kidney Cancer. Stage IV Papillary Renal Cell Carcinoma, to be exact. Those were the words that came from the Oncologist who my husband and I had been sent to after finding a swollen lymph node above my left collarbone.
“I am very sorry. This is not good. It is the worst possible sub type of this category of cancer that you have been diagnosed with. So sorry…” our Oncologist told us.
Impossible, I thought to myself and asked her how this could be. You see, I had been under very close “observation” by a Urologist and a Nephrologist (Kidney Doctor) for about a year in a half. They had been “watching” the very same kidney that the main tumor was thought to be on. In fact, they had been watching me so closely that I had had at least a dozen scans, either CT’s or Ultrasounds, within those 20 months. How could this be?
My head was spinning as I watched my poor husband’s helpless looks. I was going over the events of the past 20 months in my head and recounting them for the Oncologist who had nothing to do with the mishandling of my health and, quite obviously, felt so compassionate for our situation. How could this have been missed?
“This shouldn’t have been missed.” The Oncologist said.
This kidney had been so closely scrutinized over the past 20 months because of a genetic disease that had been discovered. My grandmother had told me to watch out for symptoms of this disease, even though she had been diagnosed with it and lived a very long and healthy life. The disease was Polycystic Kidney Disease. There is almost nothing you can do about it if you get it. It is just one of those things that usually rears it’s ugly head around the age of 40. Mine began with the first symptom of high blood pressure, then, 6 month later the first cyst (at least that I could tell) appeared.
This cyst was a monster! I would lie down in bed at night and could feel a lump on my right flank. Feeling it was an understatement. I was a very healthy 115 pounds, so there was no mistaken this lump was there. I could practically grasp it in my hands! It was about the size of a medium potato. At the time, I had no idea what it could be, so I went to my family physician immediately. As soon as she examined me, she wasted no time sending me to have a CT scan which revealed a 10 cm cyst on my right kidney. I was referred to a Urologist right away and was given the option of aspirating the cyst in an attempt to make it go away. That failed. It returned within a month. That began the period of “observation” by my Urologist. I began seeing him about every 6 weeks, which included ultrasounds or CT’s so we could “watch it”. He, also, sent me to a Nephrologist to keep an eye on my kidney function. All of my appointments were routine. My kidney function was great and the cyst remained stable. I was told that I had nothing to worry about. These two Doctors would be watching me closely and would advise me if we needed to do anything else with the monster cyst.
Everything was fine until, during a routine ultrasound, the Radiologist reading the report discovered something very troubling, The once simple cyst and now become a solid mass with multiple septations. The Radiologist wrote on his report that he strongly suggested tissue diagnosis, or biopsy. Let me clarify…this was a full year before my cancer diagnosis. As I read the report, I did like everyone these days and I went to Google. My research quickly told my that he was suspicious that I may have cancer.
My husband and I were so confused. Together (we always went together), we went to see the Urologist to discuss the report. While we were there, he left the examination room to personally call the Radiologist in what we found out later to be an attempt to get him to change his report. When he returned to see us, I specifically remember asking him if this could be cancer and he emphatically said “No.”. I had nothing to worry about. My kidney function was terrific and I should just continue on with the same routine of periodic scans and consults with him.
This did not sit right with neither my husband or I, so I took the report to my Nephrologist to discuss. Again, my husband and I went together. I handed him the report. After a short glance, he handed it back to me and repeated what the Urologist said “I had nothing to worry about. No cancer.”. Both physicians believed that it only turned into a solid mass because they had “messed with it” during aspiration.
Now, my husband and I were very naive and trusted these two professionals. They put us at ease and I was able to put the scary report out of my mind for a year. I just did as I was told and continued to have CT’s and Ultrasounds, even an MRI as ordered by these two physicians. Cancer was the furthest thing from my mind when I felt a swollen lymph node above my left collarbone a year later.
I had had a swollen gland in my neck before, maybe associated with a cold or something several years ago. Once again, I did the right thing and went straight to my family physician who sent me right away to an Oncologist. Remember, this was a full year AFTER I was told not to worry about cancer. I was perfectly fine.
The Oncologist sent me in for a biopsy. The result that I was given shocked me to the core. Renal Cell Carcinoma, Stage IV! Inoperable! How could this be? I was told a year ago that it was ridiculous to think that this cyst could have turned cancerous! Now my husband and I were faced with the most horrific news anyone could bear to hear. My sweet husband, who I met when I was 14. We had been married 20 years and had 3 teenage daughters. How could this be happening? We were proactive and went to every scan and appointment that these two physicians had ordered. We had read every report and asked all of the questions, so we thought.
I was so upset that my health was so mismanaged by these two trusted professionals. I had so many questions, but my thoughts became consumed with how was I going to break this news to my children. It was hard enough watching my husband deal with the diagnosis, but telling the girl’s was one of the most difficult things that I have ever had to do. The problem was that I had been in their places. When I was 16, I witnessed my own beloved Father die from cancer. He had Melanoma. I had to watch him die for 6 months. I knew how my daughters would feel. How could I bear to tell them?
To be continued..