After 7 years of a lack of resources, accurate diagnosis & a general ignorance of NETs in my community – with my case including 2 major SB resections and metastasis from the ileum to lymph nodes, mesentery and pancreas – I was DESPERATE for answers and help. NCAN has been such so accurate, informative and understanding – with the founders asking NOTHING and giving EVERYTHING to help me be better educated, connected and able to advocate for myself & others. This “nonprofit” works WITH others – in concert with competing nonprofits, groups and organizations for the benefit of patients, physicians, research, advocacy – a totally selfless service that continues to benefit me & so many others. THANK YOU NCAN, Maryann, Bob, staff & volunteers! — Tom, Patient

It will wake: You’re so young you will heal up quickly. Plus Carcinoid once removed, it is never a problem later. Well, That Lie made everything change. 2004 my appendix blew in The surgeons hand. And she said it was messy. She found a rare tumor called a carcinoid tumor, she said it’s not a big deal we will do a right colon hemicolectomy I was 22 years old. No one knew anything about Carcinoid, yet alone a Syndrome? A few years down the road I became very ill. My family doctor knew I had Carcinoid Syndrome, but the other doctors believed it was in my head. Or I had something else. I didn’t and don’t show in my scans at all. My left lung they found is a scar tissue not from asthma but of this cancer. I needed more information. I looked so hard but then I found the NCAN the true “Hope for NET Cancer Patients, it does start here.” It really does. All you have to do is ask, and that answer will be given. Or it will be found. There are so many facts, answers, and real people who will listen to you at any moment in need. I have learned so much, and the help that I have gotten. I know that I’m in amazing hands when my doctors say to me “I’ve never heard of that symptom.” I can go and get ahold of NCAN, explain the issue, and there will be some sort or answer. Since our cancer is so Rare and so Uneducated, they are helping us by having a mission to not let us slip through the cracks. You can tell this is their passion. They get 5 Stars all the way. — Laura Robinson-Marsh, Patient

The folks at the Neuroendocrine Network are always very helpful. They provide much needed information and counseling on this rare disease. The conferences are invaluable for patients and caregivers. — Bob Goldfarb, Patient

NCAN has been a lifesaver for me by educating me about my rare cancer and its treatments. Cancer is scary enough but I feel empowered by the knowledge that I have gained to have an informed conversation with the many doctors who treat me and the new treatments they offer. I am amazed at the high quality programs that they offer to patients, caregivers, and healthcare providers with minimal costs to participate. I am also deeply thankful for the many friends I have met through NCAN. — Tom D, Patient

My sister was diagnosed with NETS on a Friday. Of course, we go straight to the internet, probably not a good idea. We have it set in our minds that she would live 5 years. Then I joined a facebook page and Maryann Wahmann reached out to me from the Neuroendocrine Cancer Awareness Network. From the beginning, Maryann was a true GOD SEND. She offered to meet with me and my brother in law via zoom immediately (on a Friday night). We met and I absorbed so much information and now have a support system. Yes, day 2, I woke up knowing I had a support system that we could depend on. We met with Maryann again via zoom early Saturday morning (she so graciously offered to do this so my sister could be included this time). So now, even before our oncology appointment, we feel we have been well informed. The feelings I had after our meetings were indescribable, knowing that we have the knowledgeable team and support system to go through our journey with us. We are now part of a TEAM! Thank you to Maryann! — Anita Lux, Patient Family

My name is Alex, and I am 25 years old. I was married 11-09-2019, turned 25 11-22-2019, I was admitted to the hospital 11-26-2019 for Pneumonia, and then diagnosed with a Neuroendocrine Tumor of the left lung 12-02-2019. It was a whirlwind of a month for me. Upon my diagnosis I was told that my Carcinoid tumor (The term the doctor used when diagnosing me and explaining the situation) was “no big deal, and that as far as cancer is concerned this is a good and easy one to get!” I was not given any information further about my condition. All I knew was that I was going to have to have surgery to take the tumor out, and that a pulmonologist office would be in touch with me for some breathing tests. I was released from the hospital 02-05-2019. Due to my severe pneumonia (that turns out was caused by the tumor blockage) I had to be on heavy antibiotics and wait for it to clear up before I could go any further with my care. (they suggested 2-3 weeks before it would be cleared enough to do any type of tests) About a week after being released from the hospital, I decided to do some research. Yes, I did what everyone tells you not to do, I Googled!! I was horrified!! All I could find at first was older information about Carcinoid tumors that pretty much told me I was going to die. Upon further research (after I had a small mental breakdown) I was lead to NCAN. After realizing that Carcinoid is Neuroendocrine, I was able to get some real information. NCAN has been a blessing. NCAN and my support group on Facebook (loveable lungnoids, which includes members of NCAN) have helped me in so many different ways. I was able to find information, support, answers, and best of all a community. Honestly I feel lucky to have this cancer because of the community it brought me to. I only hope that other type cancer patients have the same type of support and resources! I honestly can not imagine what my diagnosis and my journey would be like if it wasn’t for them. I had my surgery to remove my tumor 01-23-2020. My surgeon was unsure at the time of surgery if we were going to do a lobectomy or a pneumonectomy. I went into surgery unsure of if I would come out missing part of my lung or all of my lung. Turns out the tumor was larger than they realized and yes they did have to do a pneumonectomy and remove my entire left lung along with 16 lymph nodes. This was done by a thoracotomy, unfortunately VATS or other robotic surgery was not an option for me. NCAN was a great resource leading up to surgery. It gave me information on what I needed to know before, during, and after. It made me aware of the dangers of carcinoid crisis, and what I needed to do to make sure my doctor knew about this and was prepared to act in the event it happened. NCAN also helped me in knowing what type of tests and scans I needed and exactly what questions to ask my surgical and care team. NCAN also lead me to a NET specialist locally that I was able to go see (after surgery) and add to my care team! I am now NED, and NCAN still continues to be a big resource in my life. I am now looking at my life post NET and I still feel lost sometimes. Maryann, the founder, is amazing. Maryann connected me to her daughter Tricia who was able to talk with me about some of my post NET life concerns. It was one of the best conversations I have had in a while. I am so grateful to both of them for the amount of time they took with me and the information and advice they were able to give. They honestly care about the members of the NET community! My experience with NCAN has been a life altering and life saving experience. I am not kidding. It seriously helped me through the toughest time of my life, and continues to help me. I know that this NET battle is a life long battle, and I also know that NCAN is going to be there for me and all NET patients through it all! I am proud to be a Zebra! — Alex, Patient