Julie Suplee
In April of 2007, I thought I was a completely healthy, happily married 35 year old mother of four. I was active, never smoked a day in my life, took good care of myself, and still couldn't purchase a bottle of wine without being carded.
Through a random accident in my home, my life was completely turned upside down. I took a huge tumble down our steps, and went in for an x-ray for a possible fracture of my hip. The horror set in when the doctor called to tell me that my hip was not fractured, but there was something wrong.
Our family went in to complete crisis mode. I had a "suspicious mass on my left kidney". The next week was such a blur. I had numerous tests, found a highly qualified Urologist at Johns Hopkins, and had a laparoscopic nephrectomy a week later. Then came the diagnosis: Stage 2 RCC, Grade 4 with sarcomatoid areas.
Immediately following the surgery, I was referred to an Oncologist at Hopkins. I entered the Assure clinical drug trial (Sutent, Nexavar, vs placebo) in hopes of preventing any recurrence. I struggled with this decision because I wasn't sure I had made the right choice to have adjuvant treatment. The side effects were rough. The thought was that I was on the Sutent arm of the trial. I had some of the more common side effects, but instead of my hair turning white, it just completely fell out.
I felt conflicted daily because of the physical cost vs. the benefit of this trial. I completed the trial in July 2009. A couple of weeks later, my Oncologist left Hopkins. I showed up for my first appointment with the new Oncologist (3 months later) and was told that I had some enlarged lymph nodes, but that it was probably nothing to worry about.
At the next appointment the nodes were showing significant growth. After my appointment, I decided to get a second opinion. Off to New York I went for a consult with Dr. Dutcher. She confirmed that I had several enlarged para-aortic lymph nodes and a mass around my aorta and adrenal gland. I left my appointment already scheduled to begin HDIL2 two weeks later.
I underwent two cycles of HDIL2 treatments in November and December 2009. It was everything I imagined it would be, but well worth it for a shot at NED. After 12 weeks of wait and watch, it was decided that I had run out of time to wait. The IL2 may have been working, but the mass around my aorta was just too close for comfort, and was approaching what my surgeon referred to as an inoperable state.
My family and I struggled with this news and the reality of facing a very risky surgery. In March, I returned to the doctor at Hopkins who did my original surgery. I underwent a mass excision as well as removal of 14 lymph nodes and my adrenal gland. The surgery was deemed a huge success and, at my six week follow up, I was declared NED.
This news was bittersweet, because it came paired with bizarre pathology results. The pathology took several weeks to return, and when it came back, the doctors commented that they were baffled...9 of the 14 nodes and the mass were positive for RCC, but the new pathology appeared significantly different than the original. Red flags went up, and a test for TEF3 was ordered.
I have now been diagnosed with a rare form of RCC. I felt so lost. In my three years of research, and following ONC list, I had never heard of this rare subtype of RCC. Its medical name is XP11 Translocation RCC, but what this really means is that I am an adult diagnosed with Pediatric Renal Cell Carcinoma. From what I understand, it is a genetic mutation where there are gene fusions involving the TEF3 transcription factor gene. This mutation is present, and then there is some precipitating event which causes the cells to become cancerous. I am not completely sure my understanding is on the money, but this is what I took from the explanation given to me. There is very little information about what the diagnosis means clinically, because there are so few reported cases that there isn't a clear pattern for behavior of the cancer.
I truly have a sense of relief that I am currently NED, but it feels so new I can’t honestly say that I trust it yet. Our family had become accustomed to the roller coaster ride cancer has taken us on. Our children have adjusted to the frequent medical trips. Four years is a long time to young children, and this has just become a part of our new life; the ‘New Normal’.
Dr. Dutcher has given me a great description of what to expect from this new branch of RCC. She calls it a "nickel and dime you disease." This seems to make it so much less daunting and much more manageable for me.
This lifestyle has made our children amazing in coping with change, as they do not seem to panic every time I have an appointment or leave the house (like in the beginning). We are still so cautious about celebrating. It just feels better to ignore it for a while until I am further out. I decided that I am going to live my life the best that I can, and enjoy my family and friends.
Julie Suplee
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