My Bladder Cancer Story
My symptoms started with me urinating more frequently than usual and feeling tired from time to time; however, the symptoms would come and go. In February 2015 I had a TURP which showed Papillary urothelial carcinoma, low grade with foci suspicious for subepithelial invasion. A rare fragment of muscle, with no evidence of invasion. I then had another TURP in February 2015 and had a right double J stent placed. After being hospitalized for two weeks, I began having regular cystoscopies and follow up visits with my urologist. For the next nine months, everything was going well. My cystoscopies were coming back all clear, and there were no signs of cancer in my bladder.
In December 2015 a CT scan showed spots that were concerning to my Urologist in my lung and retroperitoneal node. My Urologist then referred me to see a Medical Oncologist, and on December 31, 2015, I was diagnosed with Stage IV bladder cancer at the age of 39.
Over the next five months, I had an open lung biopsy to remove the lung nodules, port placement, genetic testing and received six cycles of gemcitabine and cisplatin. During this time I would also visit Duke Cancer Institute to get established as a patient if my cancer ever returned that way I would have more treatment options available to me. During the six cycles of chemotherapy, it was a scary time, but I had an excellent medical team who provided me education and support, as well as a magnificent support system from my family.
Once I finished Chemotherapy in May 2016, my CT scans showed no evidence of disease. Over the next 11 months, I would have surveillance check ups which included CT scans and cystoscopies every three months, and I continued to hear the great news" no evidence of disease."
On April 2017 a recent CT showed mediastinal adenopathy. I was shocked to hear this news from my Oncologist. The next step was to return to Duke Cancer Institute and explore what clinical trials would be available to me. I was able to start the Incyte 101 clinical trial in May 2017 making me the second person in the world to receive the study drug and Pembrolizumab.
Bladder cancer treatment has been an emotional and scary time for my family and me, filled with a lot of unknowns and questions. I faced the real challenges of dealing with the diagnosis and treatment, but of course, I also worried about what would happen to my family and me, and… why did this happen to me?
I spend a lot of time learning about bladder cancer and educating myself on what I can do to continue to fight cancer. I also try to find ways I can raise awareness about bladder cancer treatments and continue to get bladder cancer out there on social media. I now pay more attention to what I am eating, what products I am using, and what I am exposed too. I also live in the moment more so now than ever. I don’t stress about things, and I just enjoy life as much as I can.
I was and still am lucky to have a great family support system, as well as a medical team that has been patient in answering my questions, and helping me to understand my diagnosis and treatment options. My advice to newly diagnosed patients is to rely on your family and medical support system. Do not be afraid to tell your doctors and relatives what you need from them. Have discussions with your doctors and let them know you need time with them, and it is important to have the patient-doctor relationship. Always ask as many questions as you can and make sure they have your best interests in mind all the times.
Thank you for reading my Bladder Cancer Story,