My name is Raphael. I am a 34-year-old lawyer from Brazil who loves this mysterious life. I have great parents who are supportive, and I believe very much in the power of God. I was diagnosed with FL in August 2022 and have stage 3a.
I discovered I had follicular lymphoma in January 2022 after searching the internet for possible reasons for a few lumps I had found in my neck. I read a lot about lymphoma and watched videos and realized that I might have cancer, so I began to monitor the growth of the lumps. I was scared that it could be cancer and avoided thinking about it, however, my family were concerned and so I went to see the doctor.
The first doctor I saw told me it could be lymphoma, but I didn’t want to believe it, so I went to see a second doctor who performed an ultrasound on my stomach area because I told her that there seemed to be swelling on the left-hand side. Indeed, the scan showed I had lumps all over my belly and a biopsy was done. The lumps in my stomach were about 15cm and the ones in my neck about 7cm.
Finding out I had FL was really scary, but my family were a blessing, especially my mom, and they all helped me through it. I never gave up hope that the treatment would work. I was referred to a cancer hospital here in Brazil that is supported by donations as I didn’t have health insurance at the time, and I owe them my life. Despite being there and seeing many people in worse situations due to their cancer diagnoses, I felt welcomed, loved and cared for. My strong faith in God also helped me through and gave me hope.
One of the gravest challenges I have faced is dealing with my levels of anxiety. Knowing I have FL, going through treatments not knowing if they will work, the possibility of remission and not having a cure have all made me feel anxious. However, I was optimistic that having heard stories of people living with FL for decades, improved immunotherapy treatments and my being young, meant that I would respond well to treatment.
Of course, there were dark moments. I found the therapy difficult and only completed 6 out of 8 R-Chop cycles. I lost my hair, felt tired and had changes to my sense of taste. I experienced very poor mental health and suffered a breakdown and had to be hospitalized. I was in complete panic mode, but my mom helped me through it, took me back to my doctor where they did a PET SCAN to reveal I was in complete remission. I began to then take care of my mental and physical health. I saw a psychiatrist and worked on getting into good shape with exercise at the gym. Through it all I felt God by my side, and I am convinced that my faith has helped me survive everything I have experienced so far on my FL journey.
If I could offer support and guidance to others, it would be to not give up. I feel like there will soon be a cure based on all the FL research going on, and I’d like to think I’ll be an example that taking care of your body will bring you decades of good health. Stay positive in the knowledge that treatment will improve more and more until a cure is discovered. I want to thank the Follicular Lymphoma Foundation. I also want to finish by saying “Nothing can stop a determined mind that is hungry to stay alive.”
