I Am One of 250 People

I was diagnosed in February of 2011 with a very rare type of renal cell cancer called Hereditary leiomyoma renal cell carcinoma. It is so very rare that I am one of 250 people that they know of in the world. I would not be here today if it wasn’t for God who has been by my side everyday.

Let me explain, about 30 years ago I developed what looked like a rash of tiny red bumps on my back. I went to the doctor and they said it was called multiple leiomyoma which is not cancerous. So about 15 years ago, my mom who works at UCI hospital told me that they were having Grand Rounds for doctors to see patients and they wanted me to attend. When I was there a dermatologist gave me a letter that said that the  leiomyoma could be a sign that one day could develop into Renal cell cancer. Well I never thought about it again until 5 years ago when I had to have my kidney removed along with a 10 centimeter cancerous tumor. After my surgery I went to my check up with my doctor and I showed him the letter that I had received 15 years ago. He immediately went to his computer and looked up the doctor who had written the letter. Well, 20 minutes later he came back into the room and told me that the National Institutes of Health wanted to see me because they were doing a clinical trial on the type of cancer that I have.

I was so overwhelmed by everything that I had just gone through and now I had to travel all the way across the country. So two months later I went. Once I got there I went through every test and scan you can imagine. When I met with the Doctor he told me that he was the one who wrote that letter 15 years ago. I immediately knew that God had been a part of this journey with me before I even knew it.Robynn 2

They discovered that the cancer had metastasized to my abdomen. Just when I thought it was all over, little did I know that it was just the beginning of my cancer journey. I went home and a month later I went back to the NIH to have surgery again and they removed 68 lymph nodes from my abdomen. I continued flying back every three months to have check ups.

One year had passed and they found that the cancer now had metastasized to my lung. By this time I was wondering why does this keep happening to me? I was so strong with my faith and I didn’t understand why God was allowing this to happen to me? I had another surgery to remove the middle lobe from my lung. This was by far the worst surgery that I’ve had. I prayed and prayed that it would be the last but unfortunately one year later I had to have another tumor removed.

I don’t know how I was able to keep going but I knew the only reason was that I had my Savior with me and I had never been closer to Him. I knew that my life was in His hands and the only way I would make it was by trusting Him.

They discovered another tumor in my chest cavity that was inoperable so they decided to start me on two types of targeted chemotherapy drugs. Thank God my insurance covered it and I’m able to have all of my treatments at home.

I have been on Chemo for 2 years now and my tumors are not growing. They have even SHRUNK in size. I continue to travel back to the NIH every three months for check ups and will have to continue treatment forever, but I’m living a normal life now and I am in such a good place.

Robynn formalI have so much peace in my heart and I am so thankful for my wonderful family who has taken care of me through it all, but most of all I am thankful for my Lord and Savior for never leaving me and giving me something to live for!!!!  I am a completely changed person now and have learned to trust that God has a plan for my life. I’ve been through many trials and I have many STRIPES. I have definitely become a WARRIOR.


Comments (4)

  • Prayers to you! I too have this gene actually the NIH says my gene is the marker that identified the HLRCC! My son also has the gene! I personally know how frightening the NIH can be but truly believe you are in the best of hands! I have notified most of my family about this and only a few have chosen to know if they have the gene or not! Kudos to you!!! Keep fighting and remember what they learn from your ordeal may help others! GOD bless!

  • Robynn
    I’m so sorry you had to go through all that, but God has really shown
    Himself through all of this.I’m sure this testimony will give others
    A will to keep going and to trust God to help them.
    Love you.

  • This wonderful lady is my niece. I can not even tell you how much I admire and love her. God truly is answering our prayers.

  • So sorry for all the the pain you went through !!Wish you peace, love and a pain free life❤? Going to school and growing up together, we never know what’s going to happen when we get older. So glad you have a wonderful family to be by your side and always know that you’re in my heart and I wish you the best…xoxo


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