My name is Michel DeQuevedo, I am a 52-year-old Mexican – Canadian musician living in Hamilton ON, Canada.
How were you diagnosed and how long did it take?
After almost 10 years with symptoms and getting every single digestive system disorder diagnosis and treatment, I was diagnosed on September 15th, 2021, with G1, stage IV gNET, small bowel primary with metastases in my liver, colon, appendix and omentum. At first, neither my family doctor, nor the radiologists interpreting my multiple CTs, MRIs, ultrasounds, gastroscopy, or colonoscopy, were able to identify the disease. It was after I requested to have another ultrasound and chose a different facility when something was noted, although it didn’t say what it was. Quoting the exact words of my family doctor: “I’ve never seen anything like this, I don’t know what to tell you, there is definitely something there, but I don’t know what it is.”
A few weeks later, a biopsy revealed the nature of the problem, and I was referred to an oncologist. My first (and only) visit to that oncologist was devastating. “It’s inoperable so, it’s palliative care for you” – were his first words to me. He was so dismissive, wouldn’t answer any of my questions and it just seemed like he wanted to get out of there as fast as possible. The one thing he did right was prescribing lanreotide, 120mg, every 28 days.
After a couple weeks of heavy depression and strong feelings of defeat, I decided I’ve had enough of feeling sorry for myself. I realised that I was still strong and able to fight and that I needed to find options. I sent my test results to different specialists and friends in the healthcare industry until one of them gave me a call and said “I know this disease and I know exactly who you need to talk to, Dr. Julie Hallet”. From that moment on, everything changed, my first conversation with Dr. Hallet was so different, her first words to me were: “Whatever you’ve been told, forget it, they don’t know how this disease behaves”. It turned out, I was a candidate for surgery and the specifics of my case presented an optimistic prognosis.
What treatment have you had and how did it affect you then and now?
I received a bowel resection surgery in December 2021 and got 90% of the disease removed. I’ve been on lanreotide since. As of my latest scan, I am in PFS (progression-free survival).
What impact has the diagnosis had on your personal life?
Being diagnosed with cancer had a huge impact on my life, both personally and professionally. Professionally, it gave me the courage and the motivation to pursue goals that I had put aside before, because of a fear of change. Personally, it opened up a whole new perspective about my life and the way I want to grow as a person. I’m a lucky one, because my case is not aggressive and it is relatively easy to manage, so I see it as a wakeup call, it’s an opportunity to do better. It’s also given me an opportunity to help people going through the same process I did, which I had to navigate alone. I am the founder of NETs Mexico, the only active NET patient organization in Latin America.
What lessons have you learnt along the way?
Perhaps the most important lesson has been to accept my own mortality, to realize that it is not something that will happen sometime far, far away. It’s real and it is right in front of us every second of our lives. We all know it will happen, but we always see it as “not yet… it is still far away” and I believe that this prevents us from seeing what we are and makes us chase the wrong goals.
Who’s been your hero? Perhaps it was you!
Speaking specifically about my NET journey, there are 4 women who are my heroes. These women have and continue to be an inspiration and a never-ending source of strength and support.
Dr. Julie Hallet, a force to be reckoned with, unstoppable, in constant pursuit of excellence and definitely one of the biggest assets in the neuroendocrine and surgical community. Thank you Dr. Hallet, I owe you everything!
Lisa Yen, another source of inspiration and an example of resilience, dedication and kindness. From the moment I first met her, she became who I aspire to be. You are such a beautiful person, Lisa, and I hope I can get to achieve at least a fraction of your greatness.
Dr. Jaydira Del Rivero, yet another example of excellence and dedication! Dr. Del Rivero has been invaluable to the neuroendocrine cancer communities, both medical and patient. Her humility and selfless will to help are a testament to her dedication and commitment to improving the lives of all the people living with this condition, I can not thank you enough for everything you do for us. Did I mention she is Mexican? ¡Eres un orgullo para México!
And last, but certainly not least, my wife Jackie. Without her, and I say this very often, I would not be who I am today, I would not be where I am today… most likely, I wouldn’t even be alive today. She is the source of everything good that has happened to me and continues to surprise me every day with her everlasting support and undying love, even when I don’t deserve it. I love you with all my heart!
Did you get any help from a patient organization during your journey?
From the day I decided to get out of bed and start fighting, I have been fortunate to have the help and support of many NET patient organizations, including INCA, CNETS, NCAN, The Healing NET Foundation, Ronny Allan, CCF and more, but there is one that has definitely been my home since my diagnosis – LACNETS.
How are you now?
I’m fine, thank you. How are you? Hehehe. I’m stable, physically, mentally and emotionally. I’m taking care of myself and doing everything I can to stay this way. I am aware that my situation can change any time. Cancer is nuts so I think it is important to never lose perspective but, until then, I’ll do my best to stay positive, to grow as much as possible and to help as many people as I can.
