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!
CCAN was there when all the other Carcinoid foundations did not answer the phone on a holiday. Maryann and her husband were a godsend. They spent a hour on the phone with me on Christmas day 2008. I was having a rough day dealing with my recent DX. But they talked to me and calm me down, They told me to call anytime and they would help me with my journey,
I will continue to suport them anyway I can.
CCAN provides the most current education about the diagnosis and treatment of carcinoid/NET cancers for both physicians and patients, consistently providing top notch physicians and educators. They also provide unparalleled support to patient support groups and brought a conference to our region at the request of our local support group.
CCAN is among the top patient advocacy groups in the nation.
I've benefited from them as a patient from attending their conferences and from watching their conferences and webinars on line. They have also provided support to our local patient group. I can't say enough about the good they do in the carcinoid/NET community.
CCAN is one the the most up to date and extensive soureces of information on neuroendocrine tumors in the USA . These individuals serve as a day to day source of comfort, information and physician referrals for individuals with these rare tumors. In additioin CCAN is the sponsor or co-sponsor of regional and national conferences that are geared to educate those individuals with these rare tumors
Wonderful organization. Very informative and helpful information. Being such a rare disease, we need all the help we can get as patients. I read each and every word they print. My hats off to them.
carcinoidaware 06/21/2011
Thank you for the wonderful review. Please check our website at important links. There you will find a link to find the NET specialist.
Truly, I cannot say enough about the generosity, kindness, and helpfulness of this organization. When I was first diagnosed with this rare cancer, I called and spoke to Maryann Wahman for over an hour. She was, and has remained, an advocate for Carcinoid patients, while being a patient herself. She and her husband and family run the entire organization, and take calls, plan events, run a support group, and keep up to date on the latest information. They always have time to help somehow. They help with referrals to carcinoid specialists, have information on procedures and medications, and can get people in touch with each other to help. I cannot thank them enough.
Carcinoid Cancer Awareness Network is an invaluable resource for folks dealing with carcinoid or neuroendocrine cancers. They have provided one on one assistance to survivors and caregivers and in addition have supported other support groups during their start-up by providing great information and advice. Their role in in organizing and posting videos of conferences held across the country has allowed patients and their families access to information they might never have gotten otherwise. As carcinoid and neuroendocrine tumors are rare cancers, survivors and caregivers can feel very isolated. It is fantastic to get connected with other survivors and caregivers, support groups and most importantly those medical experts in the field that can get the survivors on track with a management plan that can lead to a high quality, productive life for folks with this disease. CCAN also serves as the patient liason to the NANETS (North American Neuroendocrine Tumor Society) and has been one of the founding partners in the recently organized world wide NET awareness group that has instituted and promoted Worldwide NET Cancer Awareness Day. Hopefully, the awareness that is the mission of this organization will lead to more doctors looking for NETs in their patients, more research dollars for a cure for NETs and more young doctors choosing a specialty in this field to give NET patients in the furture a brighter tomorrow. The service CCAN provides is invaluable to the NET community! Kudos for all you do!
I know one of the founders of this organization from high school. Much to my surprise the husband of a colleague at work has this specific (and rare) cancer. There are no coincidences. That CCAN came into my life so that I could pass on the information to my colleague has meant so much
CCAN , was able to give this family the information they needed to make difficult decisions about their future.
I have participated in the Walk and the Gala this past year. Bob and Maryann are so warm, knowledgeable and supportive. The outreach they do with the public, corporations and hospitals is invaluable.
I have a very dear friend that has this disease and seen how much good this organization has been for her. The commitment and help that is given from this organization is amazing! The kindness, caring and love that is offered when they are helping you is wonderful. I can't say enough about this organization and all the help they give to those that need it and on educating everyone about this rare known cancer.
I started walking last year for the cause and will continue every year in the future for as long as I can.
My mother passed away at 57 years old from Carcinoid Cancer. We had never even heard of this type of cancer. CCAN has been a very informative nonprofit organization that has equipped me with the knowledge and ability to share about this deadly disease. They are doing wonderful things and need any support they can get!
