We are so excited to announce that Leslie Coffin, a dedicated pheo/para community member, has been featured in International Neuroendocrine Cancer Alliance (INCA)’s Global NET Cancer Day 2025 Campaign!
November is NET Awareness Month, and November 10th is the official NET Cancer Day! NET Cancer Day is coordinated by INCA and was created to increase awareness of neuroendocrine cancers (NETs) as well as provide a voice to the NET community for improved diagnostics, treatments, information, care and research. NET Cancer Day is about drawing attention to this uncommon form of cancer and starting a global conversation amongst communities, medical professionals and governments.
Leslie’s story is featured on the INCA website, but we are also excited to share her story here:
My name is Leslie Coffin and I’m 47 years old, residing in Marion, Iowa with my husband and four dogs. I love doing anything outside, whether it’s playing frisbee and fetch with our dogs, going for a bike ride, or seeing a local concert.
How were you diagnosed and how long did it take?
I have a bit of a unique story of diagnosis, compared to some. I was diagnosed with breast cancer in early 2024 and went through genetic testing as part of my journey and recovery. Though I tested negative for the BRCA gene, I tested positive for the SDHB mutation. When the genetic testing counselor used the words “paraganglioma” and “pheochromocytoma” for the first time, I remember having NO idea what she just said. I had no idea what a neuroendocrine tumor was and I certainly had no idea why she was using such a sympathetic tone when she said “I’m sorry you have this genetic mutation”. At that time, we were so focused on getting me over breast cancer that SDHB simply became four letters of the English alphabet that happened to fall together in my genetic test report, quickly becoming one of my least concerns.
In October of 2024, when I had fully conquered breast cancer, my Oncologist said “onto our second battle, it’s time for your paraganglioma CT scan.” But I wasn’t concerned. I had no symptoms of the paragangliomas I had vaguely only heard about at that point, so I went into my first neck to hip CT scan feeling optimistic and unaware of the potential risks that awaited me. And then came the call that changed it all. I had a lesion on the left side of my neck and what looked like a potential lesion on my left adrenal gland. That’s officially when the concern began.
Between November 2024 and May 2025, I had additional CT, MRI and PET scans (too many to easily count). I visited several doctors and I learned A LOT about the SDHB mutation. The words “paraganglioma” and “pheochromocytoma” were no longer as unknown and there was a part of me that longed for the day I sat in the genetic counselor’s office so innocent to the world of neuroendocrine tumors and, yet again, the threat of cancer. It was during this time that I started to more fully understand the genetic counselor’s sympathetic tone.
At the end of my initial scans, it was determined I have a carotid body tumor and a paraganglioma in my abdomen (left para-aortic region).
I was thankful it was only two and I was thankful they were small, knowing by then how unfortunate some stories can be. Today I still consider myself “lucky” for having just two small tumors. Even being one of the lucky ones, though, I still have moments where I’m terrified of what risks my SDHB mutation adds. Even when the world of neuroendocrine tumors has become more familiar to me, this “disease” still feels unpredictable and unknown.
What treatment have you had and how did it affect you then and now?
The abdomen tumor poses greater risk, and sits close to my aorta, so I’m scheduled to have that tumor removed in early December at Mayo Clinic in Rochester, MN. Then the carotid body tumor resection will come in 2026. In the meantime, I’m scheduled for my second annual screening the day before surgery.
The teams at the University of Iowa (where I started my journey) and Mayo Clinic (where I’m currently receiving treatment) have been so caring and empathetic. Mayo Clinic doctors and surgeons have been there for any questions I have around my upcoming surgeries and additional scans, ready to educate me and calm my nerves when I start to feel uneasy.
What impact has the diagnosis had on your personal life? What lessons have you learnt along the way (if any)?
The last year has taught me to really enjoy life’s moments we’re blessed with. Breast cancer scared me, but it was nothing compared to the moments of fear I’ve felt during this “second battle” with the SDHB mutation and paragangliomas.
I’m thankful my story was unique; they caught the tumors when they’re small and not life threatening; I know many haven’t been as lucky. As one Mayo doctor said at our last appointment, “this story would have been much different had you waited.” So, every day I remind myself that my story could have indeed been much different and I’m thankful for all I have in front of me. Thanks to the doctors, my family and support system, and early detection.