Many women are familiar with that exasperating and hopeless feeling of having their symptoms dismissed by doctors for one reason or another. It’s something Maryann Wahmann knows all too well. It took seven years and six gastroenterologists before someone took her seriously.
With symptoms like anal bleeding, uncontrollable diarrhea, and flushing, Wahmann knew in her gut that something was seriously wrong. But her worries were brushed away with directions to eat more fiber. She was also told that she was experiencing the symptoms of a bad marriage (she certainly was not) and to seek counseling.
Ultimately, Wahmann was diagnosed with Neuroendocrine Cancer (NET) and told she didn’t have long to live. But she never gave up. Almost 22 years later, Wahmann is still here, persevering in her own fight against cancer and advocating for other patients.
After her battle just to get diagnosed, Wahmann realized just how little information and support was out there for people with NET and their caregivers. So, almost 20 years ago, she and her husband founded a non-profit called the Neuroendocrine Cancer Awareness Network (NCAN) to educate and support the NET community. She graciously agreed to share her story with me and what it truly means to be an advocate and a survivor.
Catie Kovelman: How did you stay motivated when you were going through cancer?
Maryann Wahmann: Well, I am actually still going through cancer and treatment as there is no cure. I will be on treatment for the rest of my life. What keeps me motivated is my family. I wanted to see my children graduate, get married, and have children of their own. Another motivation was saving my daughter’s life by getting her diagnosed early.
CK: You clearly are a survivor. So what does being a survivor mean to you?
MW: I was given the diagnosis of 5-year survival. I feel that I was saved so I could help others in their NET Journey. Almost 22 years later, I am still here. Has it been easy? No, not with surgeries and continued treatments. But every day, I get up and feel truly blessed and grateful for my journey.
CK: What do you wish people knew about Neuroendocrine Cancer?
MW: I wish there was more awareness of this cancer. Unfortunately, several famous people died of this disease which could have brought more awareness – and awareness could have led to earlier diagnoses for many.
CK: Can you tell me in your own words why you decided to start NCAN?
MW: NCAN was started because when I got diagnosed, there was no real support. So, NCAN’s programs are born from the necessity of educating patients and increasing awareness of neuroendocrine cancer. The doctors are true NET specialists, and their presentations are the first time many patients and caregivers understand that treatments exist for them. These events change their lives.
CK: How has NCAN grown since you founded it almost 20 years ago?
MW: We were a very small organization but have grown to a database of 10,000. When we started, we were sending out maybe 200 information packets a year; now, we send out about 1,200 a year. We have 30 chapters across the country and have produced 100+ conferences.
CK: Can you give an example of how you’ve seen NCAN make a positive difference?
MW: At one of our conferences, I met a pancreatic NET patient who had already been through a large surgery called a Whipple and had been told that she was ‘cured.’ Well, neuroendocrine tumors are different from other tumors, and I shared with her that this was something that should be followed for the rest of her life. I contacted her monthly to ask her if she had her follow-up scans. At one point, she said, “All right, I will schedule a scan just so you know I’m cured.” The scan came back with a very large and aggressive NET that would have killed her if she hadn’t gotten it surgically removed. I was so grateful to save her life. That is what makes patient advocacy so interesting and important.
CK: How can people best support cancer patients or their loved ones who might be battling this disease now?
MW: Be there to support. Go to appointments with them and learn as much as possible about the type of cancer they are dealing with. But caregivers also need to remember to take care of themselves as well.
CK: What’s coming next for NCAN?
We just hosted a big National NET Patient Conference from November 10th through the 12th at the Marriott Marquis Hotel in Atlanta. There, we had over 20 specialists from around the country and over 350 patients and caregivers in attendance.
We will also be hosting our Annual Celebration of Life Gala on Long Island at the sterling in Bethpage, NY, on November 19th. On November 20th, NCAN will host our annual Zebra Walk virtually. Anyone can participate around the country. More details are on our website.
CK: Can you tell me about your Zebra logo?
MW: According to The National Geographic Society, the zebra has a unique coat that’s quite different from other animals. And each individual zebra has its own striped pattern, as unique to it as fingerprints are to humans. In fact, no two are exactly alike, just like NET patients. No two NET Cancer patients are the same. The zebra is our way of reminding doctors that the uncommon exists and should not be overlooked.
CK: How can people get involved with NCAN if they need support? And how can people support NCAN if they want to be supporters?
Please note, answers may have been edited for length and clarity.