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! I attached some pictures. The first picture is my mom and I day of surgery, the second is me the day I moved from the ICU, third is me walking the halls of the hospital (about 8 days from surgery), and the last is me 11 weeks post surgery!
Maryann and her team are a joy to work with!
I contacted Maryann to be able to learn more about the cancer patient experience directly from patients. A strong advocate for herself and others, Maryann and I worked together to educate patients about remote symptom monitoring and invite patients to give direct feedback on tools that my company, Carevive, is developing to help fill gaps in cancer care. Together, we distributed a survey and hosted a live Zoominar for the Network and their friends and had a great response!
Other patients quickly feel comfortable with Maryann, who uses her knowledge and experience to help them get connected to care and support during a difficult time. Her responsiveness and passion are trademarks and I hope to work with Maryann and her team on other projects soon.
NCAN has been an absolute blessing for me and my family. Upon learning that my mother was diagnosed with a NET, this was the first place we were able to turn to for information and guidance. MaryAnn is INCREDIBLY knowledgeable and she truly cares about what's going on. She's easily accessible and gladly shares what she knows, and was able to direct us to the care of a specialist. THANK YOU THANK YOU THANK YOU!
NCAN is a 24/7 resource for NETs patients/family/friends that is selflessly run by Maryann and Bob Wahmann. The administrative overhead is minimal and every facet of this non-profit is geared to service for the patient!
As a 7+ year NETs patient, NCAN has been of inestimable value to me for information, referral and support.
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!
Hi my name is Anita Lux. My sister was diagnosed with NETS on a Friday. Of course, we go straight to the internet, probably not a good idea. We has it set in our minds that she would live 5 years. Then I joined a facebook page and Maryann Wahmann reached out to mefrom 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 graiously offered to do this so my sister could be inculded this time). So now, even before our oncology appointment, we feel we have been well informed. The feelings I had after our meetings were indescriable, 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!
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
I was diagnosed April of 2014 with a neuroendocrine tumor of the ilium. My local oncologist referred me to a NET specialist at Mount Sinai Hospital in NYC, Dr Richard Warner. I went to my first appointment with so many questions about this rare cancer. There wasn't alot of information out there at that time. Dr Warner answered all of my questions and also suggested I go to a NET conference that was being held later that month in NJ. That was the first time I met Maryann and Bob. I learned so much at that conference. The most important thing was I was not alone. My husband and I have since participated in many NCAN confrences and events.
Maryann and Bob have done so much for the NET community like spreading awareness,education and Netspiration with Maryann just to name a few.
I'm so grateful that I went to that conference and met Maryann and Bob. They have helped me through this ongoing journey.
NCAN is a national organization that helps Neuroendocrine Tumor patients navigate through their disease journey. They provide support for these patients by hosting national conferences, local/regional/national support groups, and patient events. They engage in virtual communication and offer daily inspirational podcasts regarding life with NETS. Maryann and Bob are one of a kind. They care for these support group members as if they are their own family and provide resources and a helping hand. They have dedicated their lives to the mission and let NET patients know that they are not alone.
Maryann and Bob at NCAN have been a great resource for educating patients with neuroendocrine tumors! They have been a pleasure to work with.
The NCAN team does their very best to keep patients and their families informed about NET, as well as offering advice and resources. They mail materials, host educational events, provide inspirational content, and spend hours on the phone answering questions and connecting people to the help they need. NCAN has also established a network of support groups around the country to make education and support accessible, especially in areas that are underserved by medical experts.
My family has volunteered with this nonprofit for years in many different capacities. We have seen them grow year after year. We have helped out at the walk in Nassau county, New York. We have helped out in many different ways at the annual Gala also in New York. We saw first hand how hard the Wahmann family works at the national conference and many other events. I have attended a different non profit conference that has been around longer and has more $(different disease) and was so disappointed with how poorly it was run compared to ncan!!
Naively I thought it would be run as well and as smoothly as Ncan. Maryannn,Bob and family work and travel to help spread the word about this disease and how to fight it. Getting information out is something they have been doing for years. Coordinating with drs, drug companies and patients is something they are passionate about. Getting funding for nonprofits is an uphill battle especially for lesser known ones but this hasn't stopped them . They do this day in and day out. They do this not just for themselves but all patients and families that this disease has affected.
We are proud to help them in any way we can.
I have learned more from this resource than I did from the hospital staff. Their support helped get me through rough times. Always educational.
Without the Neuroendocrine Cancer Awareness Network,
I would never have found the help I needed. Being treated by a specialist is an absolute must with our cancer.
MaryAnn had the resources that lead me to Dr. Anthony at the University of Kentucky. Now all I have it one tiny tumor left and it’s trapped in old scar tissue from treatment in the past that wasn’t what I needed. If you don’t see a specialist, you can’t get the proper care.
Thank goodness for Neuroendocrine Cancer Awareness Network.
My wife has Neuroendocrine Cancer and while searching for information on her cancer she became involved with Neuroendocrine Cancer Awareness Network. She began to discuss lab tests, scans and other tests for patients which were not available in our area. She discussed different treatments and wondered if they could help her cope and feel better. Truthfully, I listened but privately didn't know what to expect.
In the fall of 2014, we attended a National Conference hosted by NCAN. At the conference, as we met other patients and caregivers, I watched my wife come back to life. I realized we both needed this outlet for education and support.
We have continued to be involved with NCAN and attend as many functions as possible. We participate in a monthly NCAN support meeting for our in state patients. Several caregivers attend the meetings and we are able to share within the group or privately. Everyone encourages the other members, celebrating the good times and supporting each othef during the bad days.
I look forwarc to the conferences and educational seminars where we attend the educational sessions, make new friends and reunite with old friends. NCAN is very beneficial to NET patients and plays a vital role in the life of the patient and their caregiver.
There are no words to adequately express my gratitude and appreciation for Neuroendocrine Cancer Awareness Network (NCAN) and for everything they do to bring awareness, hope and education to the NET cancer community. Under the tutelage of Maryann and Bob Wahman NCAN has touched and impacted the lives of NET Cancer patients in ways that far exceeds other organizations.
NCAN, makes every effort to educate and encourage NET Cancer patients and their families. Upon contacting NCAN the patient or caregiver receives a ' NCAN New Patient Package' which helps the patient to better understand NET Cancer and how to navigate the NET Cancer journey. NCAN provides hope where there was none.
NCAN hosts National Conferences and Regional Seminars in which acclaimed NET Cancer Specialists present topics on treatments, surgeries and nutrition. During these events the patients have the opportunity to ask questions and often receive valuable information to share with their local doctors. Also, the patients have the opportunity to meet other NET Cancer patients and create strong friendships. This may be the only time a NET Cancer patient meets a fellow patient.
NCAN, keeps the costs associated with attending the events to a minimum. Neuroendocrine Cancer is an expensive cancer to treat and many patients have lost or given up their jobs as they are too sick and fatigued to work. In addition, NCAN posts many presentations on-line in order that as many patients as possible have ever access to the material.
Many NET Cancer patients are told, 'NET Cancer is the best cancer to have.' I can't agree with that statement but I irrevocably state that 'NCAN is the best Nonprofit group for NET Cancer.
I am approaching my 4 year anniversary of my Carcinoid/NET surgery and I am thankful everyday for the people who have offered me encouragement, shared knowledge, and helped educate me about this devastating form of cancer. Carcinoid Cancer Awareness Network is at the top of my list of people/groups to thank. May 14, 2011, I was in the emergency room with a blockage in my small intestine which required surgery. I was shocked to learn the blockage was caused by a malignant carcinoid tumor but was assured the Doctor removed all the tumor and I would be fine. After all," this is a slow growing tumor, it is the best type of cancer to have and I would feel better than I had in years".
I went home and kept waiting to feel better, I waited for one and half years and I was not improving, if anything I was experiencing more problems. I started searching for information and came across Carcinoid Cancer Awareness Network and I contacted them immediately.
I can not begin to express what a difference that phone call made in my search for answers. CCAN talked with me, not at me, and provided information about Carcinoid/NET, helped connect me to support groups and mailed me an informative packet.
This past September I attended a Carcinoid/NET Conference sponsored by CCAN and was in the company of other patients and the top Doctors who specialize in Carcinoid/NET cancer. I was amazed at the low cost to attend this conference, how organized it was and how much I learned. It was very clear the speakers were dedicated to making a difference in the quality of life and life span of patients.
CCAN is available to us every day and offers a warm voice and caring person to answer our questions, help soothe our nerves and point us in the right direction. I cannot say enough about what a wonderful source CCAN is for people living with a rare type of cancer where there is little awareness.
NCAN has helped my family and many others! They are vital in our cancer community.
Maryann and Bob have changed this cancer. It was once so rare that no one even knew where to start to get help. Because of their consistent effort, hard work and passion for awareness, doctors and patients alike have a place to turn for help and guidance. Thankful for them daily!
NCAN is a true patient advocacy group that is comprised of all volunteers, many of who have this rare form of cancer. The founder of the group is a patient who has taken up the cause to brings awareness of the disease not only to the patients but to the medical field. Because of their efforts there are now more doctors and pharmaceutical firms are focusing on the disease.
Ncan has been a great support group for our family . The information ,knowledge and understanding these members and leaders have helped us so much . Being able to find someone knowing what your going through and sharing experiences is such a blessing . Thank NCAN for all your hard work and research.
Nine months after my Neuroendocrine Cancer diagnosis, I attended my first NCAN regional conference. That day was a defining moment in my new life as a cancer patient. The presentations and the professionals were exceptional, but it was the experience of meeting others who shared my rare diagnosis that allowed me to believe in my future again. Bob and Maryann have devoted more than a decade of their lives to bringing awareness of Neuroendocrine Cancer to a very poorly acknowledged group of cancer patients. Their efforts to educate medical professionals and patients are a direct link to the high quality of care I now receive. I am eagerly anticipating my third NCAN conference in September 2019.
Thank you, Anne Dabbs
NCAN provided valuable information to my mom and I to help guide us to the right specialist. They have provided support, encouragement and a sense of unity that I can not begin to explain. I am forever grateful to NCAN.
When my world of cancer became dark and dreary NCAN was a blessing in my sea of suffering. They were like a guiding lantern lighting up my life and saving me from additional strife.
I feel so grateful for all that NCAN has done for me since DX just two years ago. I have been able to attend two NCAN conference meetings, where I learned first-hand about my rare disease. I have met doctors, patients and advocates who provided so much insight. My anxiety level continues to decrease and I fee fortunate to have such an invaluable network I can depend on. Thank you Maryann and Bob for being there when I needed this resource so desperately! - Kathleen
I was diagnosed with a PNET 12/2017. I have never heard of Neuroendocrine Cancer prior to this. I get online and start to Google, I came across NCAN's website and requested a patient pack be sent to me. It was so informative and I quickly learned a lot of information. I then spoke to Maryann a few times with questions. In March of this year I got to meet Maryann & Bob along with the rest of the NCAN leaders and I have to say it was the best feeling I have had in a long time. Everyone is so wonderful and the support they have for patients and caregivers is above and beyond. I am so happy that I found another family and great support system.
When I was initially diagnosed in 2012, and subsequently had my Whipple, Mary Ann was very positive, and encouraging. I have called on her a few times and she had been able to answer the question I had or refer me to someone that could. Thank you Mary Ann.
Is this what you were speaking of Maryann? I thank you for and appreciated the Initial Packet, and being there to "talk" and offer help. I tried to post a photo and it won't let me.
I was just recently diagnosed with this cancer and would love to know who to speak to about it. I can’t find any info on th web about this. Who do you talk to to get a the information you have? I’m 33 years old and want to have a better understanding of my cancer. Neuroendocrine cervical carcinoma. I was told it’s rare and they want to treat it like lung cancer. Still trying to figure out how to reach out to people here to talk and get info. Help please:)
I live in Nashville TN. Not sure why it says NC
I have only recently been diagnosed with NET (3 weeks ago) and thus far NCAN has been more helpful to me as a resource than my own oncologist. I have already received information on background of the cancer, labs to request, doctors to seek out, nutritional information, support groups, etc. Due to the rare nature of this type of cancer, there are so few solid resources unless you live in/near a big city. NCAN provided a tremendous amount of information that even Google searches would not have uncovered. NCAN is an invaluable resource. I couldn't recommend it more highly.
Words cannot express my deep love and gratitude for NCAN. They care immensely for the community, make it their priority to help others in all ways possible, put on amazingly educating conferences that change people’s lives and so much more. Being a part of these conferences have been vital in keeping my husband alive and well. We are so fortunate to now be a part of it as well as have gained so much from all they do for the NET community. I am in awe and inspired daily by them!
I have been a nurse for 26 years and was diagnosed with Pancreatic Neuroendocrine Tumor in December of 2010. I had been getting progressively sicker over a period of years, with bizarre symptoms, flushing, rash that would lead to anaphylaxis. I was down to 85 pounds and nearly died. I had surgery at MD Anderson Cancer center in February of 2011. I was told NOTHING about my tumor, a PNET and the surgeon literally told me that “if your cancer comes back, we take it out”. No other info. 5 years later, after being told by a local oncologist I didn’t need any follow up, I was diagnosed with metastatic disease to my liver and had surgery to remove one lobe. Again I was told nothing about my type of cancer, and was told by an Oncologist the I was “way overreacting” to my new diagnosis when I was crying and upset. Again, I was told nothing about my cancer, and continued to fight these episodes of flushing, rash and fighting off anaphylaxis. My Dr ignored all of my symptoms, and did no further testing. Finally, a family friend who is a radiologist told me that my cancer was rare, and two weeeks ago I googled NETS and found a support site. I was finding information everywhere and literally stayed up the entire night on the internet researching my disease. I found Maryann’s name mentioned several times in patient forums, and everyone said to call her. I reached out to Maryann yesterday (July 13th) through Facebook. She said to call her the next day (today). I can honestly say, through the years rolling down my face, that this woman, a NET patient herself who has devoted her life to this disease is saving my life. At 2:30 in the morning, having no knowledge of any NET specialists in New Mexico, she had a name of a Dr who specializes in this disease, the information that the scan I have needed for years just started here, and I called and had an appointment with this new NET specialist, Dr, Heloisa Soares at UNM cancer center (where I had surgery for metastatic disease in 2016) in one week. I have been suffering with undiagnosed symptoms for years, and in a few hours I was on my way to finally getting the treatment I have needed for years. Maryann and her dedication to this rare cancer is saving my life. I was so sick and so tired of fighting this unknown disease for so many years that last year I was going to take my life. I am grateful that because of my two children I did not. I will dedicate the rest of my life to spreading the word about this cancer and helping and advocating in any way I can any other person diagnosed with this disease. I will be forever indebted to this organization and it’s founder for giving me expert Information and the relief that I have will finally have the knowledge and treatment I need. I say a heartfelt thank you to Maryann and all the people involved in this great organization. I only wish I had found them years ago.
It was my great pleasure to help! Please keep us updated!
As a patient and a support group leader, I am blessed to have our group as a member of NCAN. Before I learned about NCAN I had a local independent support group that fell apart when I had personal health issues. With the help and support of NCAN we now have a local group that will be sustainable because of the invaluable information, training and support we receive.
I had the opportunity to attend NCAN's Chapter Leadership Training last week (04/13 - 04/15). It was an outstanding meeting in which I learned so much about the structure of a successful meeting. Most importantly, I gathered important leadership skills which I will utilize within our local group.
The agenda was well presented and followed by the speakers, presenters, patients and caegivers. The facilitator, Rick, kept the meeting running smoothly and adhered to the allotted time frame for each segment with breaks for meals. The sessions began and ended on schedule which requires skill when people are asking questions and sharing input. Rick managed to include everyone and each participant had the opportunity to be involved.
The presenters were very well prepared and knowledgeable in their area of expertise. As a patient, I am thirsty for information about Neuroendrocrine Cancer, a complex disease which is hard to detect, and treat. It is wonderful people, such as the speakers and presenters who participated in the meeting, that keep us informed and encouraged.
The meeting crystallized the importance NCAN plays in so many patients well being. Maryann and Bob Wahmann, the staff and volunteers are relentless in their passion to bring awareness to NET Cancer and to assist patients and caregivers on their NET journey.
The knowledge and skills I garnered at the meeting will be utilized to conduct our local chapter of NCAN support program and meetings in an empathic, knowledgeable and proffessional manner. The knowledge will be utilized to better meet each members needs and identify ways we can be of service.
Thank you to everyone that helped in making the meeting a success.
A special thanks to; Maryann, Bob, Patrice, Rick, Dr. WANG, Leigh Ann, presenters and all sponsors.
TN Chapter (NCAN)
First time attending the NCAN conference. This is for chapter leaders. I have learned so much about myself, other people facing this cancer. Knowledge, tools, friendships. Amazing. Thank you Maryann, Bob, Patrice and Rick for taking me under your wing and tackle this cancer with awareness and love. Incredible Dr. Wang as well. He is a hero. Thank you again. Danielle
I attended the national patient conference 2 years ago when looking for answers and direction with a lack of such anywhere else. The information presented was invaluable and has led me in pursuit of not only obtaining the best care I can get for myself, but the ability to extend to others I come in contact with who may be looking for the same. Mad love and admiration for the founders and those involved in this foundation!
In April 2013 I had exploratory surgery and diagnosed with stage 4 Neuroendocrine Cancer with primary small bowel and multiple mets. I was told if I had" to have cancer this was the best to have". I started searching for information ( being a nurse for 39 years I needed to educate myself). I came across the NCAN website. This website was so informative, educational and had lists of NET specialist. I did attend a National Conference and plan to go again in September. I give many thanks to NCAN for this opportunity to continue to be educated. So important for Zebras in fighting this cancer! The staff has always been helpful and kind to me.
Professionalism at it’s finest. Maryann, Bob and the rest of the board are always thinking of the patients first and how they can make Neuroendocrine Cancer better known in the medical community as well as the public. What a great cause!
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.
I learned about CCAN after having surgery for a pulmonary carcinoid and have found them to be of enormous help in understanding the nature of my disease.
- Upon my first contact, I was greeted warmly and had many questions answered, including contacts of people willing to speak to me about their experience with this rare disease. I also received a large package with all types of information.
-Meetings are well focused and very informative.
-CCAN hosts a variety of conferences and other events that bring the top physicians in the field to educate patients and support people on the latest developments and answer questions.
- The management team at CCAN is very dynamic and is a major force in raising awareness about this rare disease at all levels.
Thank you for the wonderful review! See you in August for the conference. Stay well.
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.
My mom was a Zebra (carcinoid patient) this organization has helped us empower ourselves to reach out and find the best possible treatment options and has provided support second to none. I hate to think where we would be with out the amazing conferences they organize. Thank you!
After over 7 years of struggling with this dreadful disease and exhaustive searches for the right medical care NCAN came to the rescue. I attended one of their sponsored presentations in another state and within weeks found the best medical team I’ve ever encountered. I now have the care I need, that I can afford and a game plan for my future. I am no longer battling this disease alone. Forever indebted to this organization and the tireless, caring people who run it.
NCAN is an awesome nonprofit organization! The Neuroendocrine Cancer community doesnt receive funds from the American Cancer Society as the more common cancers do. So, it's phenomenal that NCAN spreads awareness for the medical community, patients, and caregivers through fundraisers, conventions, etc. Thank you Mary Ann and Bob for all that you do.
I was dx with stage 4 Neuroendocrine Cancer Jan. 2013. Having a long family history of cancer (none Net) I felt lost and hopeless. I had never heard of Neuroendocrine and frantically searched the internet. I stumbled across NCAN & reached out to Maryann who sent me a package full of helpful information. I sincerely thank NCAN & Maryann for giving hope to the hopeless!
Hi Maryann, I'm a nurse who works in adult oncology. I had a patient last night who found his way to us and a very important surgery because of you. I wanted to thank you for what you do and for the ginormous amount of hope and happiness you have brought to this man and his family's life. He was crying tears of joy for the way you changed the path of his life.
Thank you for what you do
The NCAN provides a very unique support for the many patients with neuroendocrine tumors (NETs). When diagnosed with a rare tumor such as a NET, good and unbiased information is hard to find. NCAN organizes outstanding patient-oriented conferences of excellent quality.
Top notch organization. NCAN has helped my family when my Mom was diagnosed back in 2007. We attended many of the conferences and received invaluable information from them. We took advantage of the hotline when we had questions and always knew we had a understanding and concerned voice on the other end. Thanks Maryann and Bob for all you do for the entire NET community. You are very much needed and appreciated.
Wonderful information that was informative. Education for Neuroendocrine Cancer that is so much needed. I received my free packet in a very timely manner and refer to it often. Cannot thank this awareness network enough!
I was first introduced to this organization by my BF who was diagnosed with this form of cancer. Despite being a health care professional I had never heard of this cancer nor its prognosis. I read the educational material and became involved with some of the websites and Facebook pages dedicated to this disease. I was very impressed with the sharing of medical providers treating this condition as well as the ability of members to openly share their disease process and ask others with this disease what treatment options they had experienced as well as what worked for them and what did not. My BF was very active in this community and well known by many for her educational push to learn more about this disease and share her education with fellow members. She attended the national conferences and was a spokesperson for this organization involving as many people as possible about Neuroedocrine Carcer Awareness. The disease took her last summer but through this network she left many to carry on where she left off.
I was diagnosed with a lung carcinoid in 2014 from an incidental lung x-ray for another surgery. While recovering I was searching for support & found NCAN. I am very grateful to Maryann & Bob Wahman for starting this organization. I was able to learn more about this disease as well as meet alot of wonderful people.
It is an honor to be able to work with and support Neuroendocrine Cancer Awareness Network (NCAN) founder and Executive Director Maryann and Bob Wahmann in their outreach efforts to the NET cancer community. Since Maryann’s diagnosis in 2001, the Wahmanns have devoted their lives to supporting thousands of patients in this rare disease community, annually hosting four regional patient education conferences and holding a national conference biennially. They are constantly striving to expand the information channels they use to reach patients throughout the country—making printed materials available to the 15-plus local patient support groups across the country, holding regular leadership training programs for local leaders, hosting an active online presence through their website and blog – with several thousand visitors monthly – and being available 9 AM to 9 PM 7 days a week for calls which come in from patients around the world. Our experience in working with NCAN can be summarized in a quote by famed anthropologist and humanist Margaret Mead: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.”
NCAN provides neuroendocrine cancer patients and caregivers with accessible education and resources to assist with their care. In addition to providing personal assistance over the phone and through mailings of information, they host regional education meetings around the US, featuring expert physicians. They are among the most proactive patient support groups, ensuring that patients can have access to resources and education even if they live far away from major metro centers. The heads of this group are patients themselves and they have been bringing awareness and education to this underserved community for more than 10 years.
I've been a part of several awareness networks and peripherally involved with many more Cancer groups, and NCAN is easily at the top of my list. From the top down the people I've met and the resources they offer patients and families is remarkable. And it's constantly being updated, refreshed and adjusted to fit the needs of Neuroendocrine Cancer patients and families. I like that they go to their network to see what the members need, rather than the other way around. Every person I've had contact with in the network--from patients, to the organizers, doctors, speakers and conference attendees-- has been warm, friendly and helpful. Just what you're looking for in tough times. I'm positive this attitude starts and spreads from the top, from the organizers Maryann & Bob. Thankfully there are people (and networks) like this in the world.
I have worked with NCAN for over 12 years. They are dedicated and committed to help raise awareness and educate patients and healthcare providers throughout the United States. Over the years, there have been significant advances in diagnostic and therapeutic options for patients with advanced neuroendocrine tumors (NETs). Therefore NCAN has expanded their organization to bring this new information to the NET community. As the treatment landscape changes, NCAN is determined to create programs to address the ever changing needs of patients and assure medical professionals are properly trained to manage patients with these rare diseases.
A diagnosis of neuroendocrine cancer can be a bewildering experience. NCAN provides a wealth of information. The organization makes conferences possible. Bob and Maryann are like family. They add a personal touch, being there when help is needed. Just knowing that NCAN exists makes the experience of having this cancer manageable. If I leave a message, it is promptly answered. I am treated with courtesy and kindness. It is a blessing to have this oasis while dealing with a complex cancer.
I had a library neuroendocrine awareness display in my town on and Maryann sent me very helpful information as handouts. Last year, I was refused the drug Afinitor by my insurance company and my first call went to Maryann and Bob and they listened and offered suggestions. I've also been to two conferences sponsored by NCAN and it empowered me to know more about my disease.
I was diagnosed on my 45th birthday 2005, and didn't know where to start.
Got appt with Dr Warner for April ,2 mos away...what to do with 2 months?
Went online and discovered Carcinoid Cancer Network, and got information to start my journey.
Am now a volunteer counselor at NCAN, as I truly believe the help of this organization needs be available to anyone who receives a diagnosis of neuroendocrine cancer.
I know, having reached out to new members, NCAN is doing great things.
This nonprofit is desperately needed. Neuroendocrine cancer is becoming more known, but over the past 10 years, so few doctors knew how to deal with NCAN patients. Thanks to the information provided by this non-profit, patients can now help their doctors navigate this difficult and rare disease. Thanks NCAN!
When I was diagnosed with a NeuroEndocrine tumor in my lungs four years ago, like everyone else, my husband and I had never even heard of this rare cancer. We felt so lost, and alone. Where were the pink ribbons and races for family & friends to show their support, for us to find support and most importantly - accurate information to keep me ALIVE?
I had been given less than 30 days to live - my children were only 5 and 11 years old! My husband and I were on a deserted island and the water was rising quickly --- then an amazing woman named Maryann Wahmann entered my life - a NET cancer patient herself and the founder/president of NCAN. She spent an HOUR on the phone with me, teaching me about my disease, telling me where I could find specialists who knew how to treat me, assuring me that we were not alone, and there WERE things I could do! The phone call that started in hopeless tears finished in laughter and tears of joy, purpose and relief.
Within days, I received a huge packet of information and even zebra print advocacy bracelets (don't underestimate how much these mean). My husband and I cried and clutched that information packet like the life-saving treasure it was. NCAN asked for nothing, and gave me everything.
WIthin a year of my diagnosis, not only was I ALIVE and doing great, I had also started a support group for other lung NET (aka Lungnoid) patients and their caretakers (Lovable Lungnoids). Maryann and NCAN partnered with NET specialist Dr. Eric Liu, and Lovable Lungnoids, and gave us the worlds first lungnoid conference! NCAN did all the work, got all the funding, hosted an incredible event and allowed me to have my support group's name be part of it all. They flew world NET experts in from Sweden (!!!) and arranged for 125 patients to come together for an incredible weekend of support, information and encouragement like never before in history. We got to see not one but TWO NET specialists together in clinic visits in the days before the conference. MANY lives were saved with that one week, and without NCAN, none of it would have been possible. To top it off, NCAN was able to donate 10k to NET cure research as part of our gathering. The cost to attendees? $20 including a delicious healthy breakfast ~and~ lunch. Incredible.
Heartfelt thanks, Maryann, Bob, Tricia, Tom and everyone at NCAN for all you do and for being the first organization to recognize and help the lungnoid community (now 1500 members strong). You're the best!
CCAN is such an amazingly helpful & important nonprofit! Cases of carcinoid cancer increase daily yet so little is known about this unpredictable disease. As a patient, my misdiagnosis of cancer for nearly a DECADE and doctors with grossly outdated knowledge, is sadly the common experience. Even after carcinoid is confirmed, most don't know what to do so they treat it like other more commonly understood cancers - which can be deadly to carcinoid patients. CCAN's work reaches far across the realm of carcinoid....24 hour patient & caretaker hotlines, free mailed info packets, support group funding, social media awareness, educating patient, public, pharma, and medical teams through innovative seminars and dozens of conferences each year. CCAN also coordinates large donations toward research by working with pharma. There is no CEO or other salary here, CCAN is actually a very special family dealing with carcinoid cancer themselves and working passionately to bring awareness, help and HOPE to thousands every year.
Wonderful organization that goes above and beyond in education on NET!!!
What a blessing! Maryann at NCAN reached out to me when I joined a Facebook group for Carcinoid peeps like me. I was diagnosed just two days ago. She made it very easy to reach back and that meant a lot as I was feeling quite scared. After talking with her for ten minutes I had learned just what I needed to know to begin this journey and had a printout of what tests I should be sure my Dr. ran. I will be forever grateful to NCAN and Maryann for her kind, caring help.
I have been to two of the NET conferences organized and performed by the Neuroendocrine Cancer Awareness Network, Inc. This group is amazingly and self-sacrificing in its mission to promote awareness of NET cancer and to stand by the side of the patient with information, kindness and dare I say Love. The group has a wall on Facebook where almost any question will find an accurate answer. I have deep feelings of gratitude for this group and the people who started it. I have met all of them personally and would be unable to express my thankfulness for the time and energy that they expend for the NET community. THANK YOU NCAN.
I can not say enough about this wonderful organization. I went to the first CCAN Lung carcinoid conference in Nashville, TN in April 2013. I met the founder of CCAN, her husband, and her family, all who work tirelessly for carcinoid awareness and the support of carcinoid patients. Before the conference I had been sent a packet of materials including DVDs of past conferences. This information did much to educate me about carcinoid cancer and to give me a sense of hope and renewal. I was no longer alone. Carcinoid cancer is very rare and let's face it most people who don't have it, don't want to talk about it. CCAN Talks. CCAN listens. CCAN has made a positive difference in hundreds if not thousands of people's lives because of their dedicated advocacy. They have made information available to cancer patients, helped to reeducate the medical community about this disease and banish the liaise faire attitudes from the past. One last point, they have also found and built relationships with the top carcinoid/NET doctors around the world. Many of these doctors give of themselves and their time to carcinoid awareness, research, diagnoses, and care. Please consider giving to CCAN. They are a great nonprofit.
Some of the most dedicated people I have ever had the pleasure to meet!
We were at our wits end when my husband was first diagnosed until we found this wonderful foundation called "CCAN" now known as "NCAN". They have helped my family so much in the last four years from phone calls, to packets, to conferences, you name it. They helped us get on the right track and stay there. Maryann and Bob also run an annual "zebra walk" and our family travels from Florida, Connecticut and NY to be a part of this walk each year. The zebra community is so lucky to have Maryann, Bob and NCAN in their corners. Thank you for always being there for us.
We are almost three years into our journey with carcinoid cancer and couldn't have done it with CCAN now known as NCAN. Thanks to Maryann and her family, many families have been given the knowledge and resources to deal with their cancer. They are truly an amazing family and have helped so many. They make us feel like we are not alone. If we have a question, we just call and they are always there for us. From conferences, to cruises, to walks, CCAN is always there....We are so lucky to have them in our lives.
When I was first diagnosed, NCAN sent me a huge packet of info and offered to provide anything else I needed. For someone with a rare disease, this was a Godsend. They are amazing!
NCAN has, for years, been consistently supportive of NET patients, their families and their doctors in the common goal of doing what's right for the patients. This focus is what makes NCAN stand out!
For years, CCAN has been there for Carcinoid/NET patients, and they strive steadfastly to educate the medical community about these orphan tumors. CCAN is there for you...they deserve to have all of us in their corner as well.
My wife has been a NET survivor for 14 years. It wasn't until we found NCAN, that the world fealt a bit smaller, and the information became more clear.
Their work has pushed patient information to levels we couldn't have imagined 14 years ago.