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April 13, 2018

Metastatic kidney cancer to the neck

By P

On March of 2017 I was diagnosed with a rare and aggressive kidney cancer (collecting duct carcinoma) that had metastasized to my neck through my lymphatic system. I was diagnosed at UCLA after leaving city of Hope, where I was originally misdiagnosed in June 2016 (was told it was a kidney cyst). I started an aggressive course of double chemo therapies that started early April 2017-August 2017. By God's grace the tumor of the kidney and neck reduced by approximately 50% and 70%, respectively.

Given my unexpected, yet remarkable response to the chemo, I was able to undergo a complete nephrectomy of my left kidney and an extensive dissection of my left abdomen. My exceptional urologist Dr. Chamie performed a successful surgery with clear margins. However, the neck tumor was still present and the lastest scan revealed a newly enlarged lymph node in the neck, in close proximity to the original node. That's when my amazing oncologist, Dr. Drakaki referred me to Dr. St. John and her staff member (Head and Neck Cancer Coordinator; Stephanie Lazaro).

Stephanie was so helpful and sweet. She helped me schedule my consultation with Dr. St. John and was great at communicating my questions and concerns to Dr. St. John, both before and after my visit.

Upon my visit with Dr. St. John, my family and I were warmly greeted by her. She enetered the room with an endearing smile and shook everyone's hand as she introduced herself. Dr. St. John was very knowledgeable and patient, answered all our questions pertaining to a possible neck dissection to remove the affected lymph nodes, all without rushing us out. She is definitely one of the best in her speciality! She was honest about all the risks but agreed to perform the surgery, if I fully understood and consented to the risks of the surgery.

I was still recovering from my kidney surgery. I had lost a significant amount of weight and I didn't feel strong enough to undergo another surgery just weeks later, 6 weeks at most, to have very risky neck dissection. After the CT-scan that revealed the second neck node, Dr. St. John called me after discussing my case at the weekly unit board meetings. She said that surgery would have to cause a pause in my immunotherapy treatment and that it might not get any possible microscopic disease that is nit visible to the naked eye during surgery. She was very honest and told me that she was unenthusiastic about the surgery and the risks it posed. Based off my weakness, 100-lb weight and huge risks associated with the neck surgery -- I decided to go with radiation instead. Dr. Drakaki referred me to wonderful Dr. Kishan, who was also part of the tumor board with Dr. St. John. All four of my doctors worked endlessly to come up with the best option for me. As of today, the original tumor of the neck remains the same small size that it was at the start of radiation and the second node had significantly reduced in size, and is expected to possibly continue reducing as the radiation therapy continues to have its effect until about 2 months after the treatment ends.

I want to thank Dr. St. John for being a doctor of integrity, compassion, care and dedication to her patients. Surgeons perform surgery. The fact that she was honest about her thoughts and unenthusiasm related to the neck surgery, allowed me to make a informed and prudent decision. Aside from being an amazing doctor, she is a beautiful person. She stopped to greet my family and I every time we would see her in passing. She would embrace me with a big hug when I would see her while going to radiation or other places in the medical building or hospital at UCLA in Westwood where she practices. She is a doctor of great caliber with a warm and optimistic attitude. I would recommend Dr. St. John to anyone dealing with cancer of the head/neck. Stephanie is a great addition to the wonderful experience at Dr. St. John's office. She is equally as compassionate, sweet and caring as Dr. St. John. They make a great team!

I have to say that all my doctors at UCLA have exceeded my high expectations. They are all so amazing and treat you as a friend and not just a patient. I was born at UCLA and I'm proud to say that I'm now back to be treated by the world's best physicians and most courteous and friendly staff. Thank you from depths of my heart for what you have done for me. I will always carry you with love and gratitude in my heart and prayers.

Tags: CT scan, double chemo therapies, Dr. Alexandra Drakaki, Dr. Amar Kishan, Dr. Karim Chamie, Dr. Maie St. John, enlarged lymph node, Head and Neck Surgery, immunotherapy treatment, kidney cancer, kidney cyst, kidney surgery, lymphatic system, neck dissection, neck tumor, patient stories, radiation, radiation therapy, Surgery, Urology

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