In the early days of my diagnosis, all I craved was information. I had never heard of neuroendocrine carcinoma and for my diagnosing physician, I was the first case he had ever seen. He was able to relay to me some textbook answers, but that was about it. I had no idea where to turn, who to contact, or how to proceed in getting the best treatment possible. To be quite honest, the word cancer terrified me and knowing that this silent invader had taken over a decent percentage of my liver did not leave me sleeping too well at night. This drove me to Google in an attempt to find out as much information as possible on this disease and to determine some course of action. Most of what I found on the internet scared me to death, but some of it was really valuable. This is what I want to share with you today, the information that I gleaned the most from and give you a solid starting point if you are just now receiving the diagnosis.
The following are the books that I found the most helpful when trying to learn about this disease:
- Medifocus Guidebook on: Carcinoid Tumor a comprehensive guide to symptoms, treatment, research, and support. ISBN #9781499720983. This book is a great starting point and one that I come back to again and again. It provides background information on the disease, the methods of diagnosis and treatment options as well as explaining how the disease is staged. It explains in detail the procedures used in treating NET cancer from blood work to scans to surgical intervention. The best part of this book, however, is that it works as a launching pad for further research. It explains how to gain access to full-text articles from medical journals as well as provides a list of medical professionals worldwide who specialize in the treatment of NET cancer.
- But You Look So Good…stories by carcinoid cancer survivors. Maria J. Gonzalez. ISBN #9781475981315. This was the first book that I read after receiving the diagnosis and, looking back, I would highly recommend waiting on reading the survivor stories until your story has made it past chapter one. It was actually terrifying to hear many of the experiences of other patients when I possessed so little information of my own disease progression and prognosis. It is best to wait until you have a good idea of where you stand with this disease before you read some of these stories. However, Gonzalez provides very detailed information in regard to the disease, the diagnostic process, as well as explains the different types of testing run for NET cancer and what the results mean in terms of disease prognosis. It is a wonderful starting point and provides the foundation for questions to ask your provider when seeking treatment. In my experience, I was able to choose an extremely knowledgable provider based on the things I learned from this book and was able to follow along as the doctor explained to me how advanced my disease was and the course of treatment that he recommended given my situation. It also helped to prepare me for the wide array of testing that I have undergone in the last two years as well as prepared me for the surgical intervention. I highly recommend having this little book on the shelf as a quick go to before any appointment, testing, scan, etc to help prepare you for what is to come.
- Carcinoid Cancer, Zebras, and Stardust. Mary Girsch-Bock. ISBN # 978158832626. This book is written from the third person perspective and explains well what family members go through emotionally as they watch someone they love battle NET cancer. Girsh-Bock holds nothing back as she laments the pain and struggle of her older sister and relates the feelings she harbored as she witnessed first hand her sister’s decline. It is a heart-felt book, and, for me as a patient, it opened my eyes to what my family is experiencing and has helped me take their feelings into consideration as I struggle to live my life with this disease.
The internet can be a wonderful source of information when researching NET cancer; however, proceed with caution because there are scam sites out there, personal blogs that give misinformation, and medical journals that can, quite honestly, scare the bejeepers out of someone. The following sources are ones that I have found the most helpful, and in some instances more reassuring than frightening when I was newly diagnosed.
- Ronny Allan- Living with Neuroendocrine Cancer: https://ronnyallan.com/ When I began researching NET cancer on Twitter, Ronny’s blog was one of the first sources I ran into. As soon as I followed him, he sent me a message and asked if there was anything he could personally help me with. Since then I have religiously followed Ronny’s blog. He delivers crucial information regarding NET cancer with a healthy dose of both seriousness and humor. He is up to date on the latest research and works hard to make sure he gets this information out to readers in clearly written blog posts. His blog is a wealth of information and makes a great starting point for someone new to this disease. Ronny also publishes a newsletter, is active on Facebook and Twitter making it easy to receive the most current information circulating in the NET community.
- Carcinoid Cancer Foundation: https://www.carcinoid.org/ CCF provides a wealth of information on their website, including a newsletter containing the latest information in the NET community. This site makes a great launching pad for researching the disease and provides explanations for diagnosis, treatment options, and general information. They are also active on Facebook and Twitter making it easy to keep up to date with the latest news and research in the NET community.
- PubMed: https://www.ncbi.nlm.nih.gov/pubmed/ I have found this to be an excellent site in which to gain the latest research information on NET cancer. Learning how to formulate a query can be a bit challenging, but the site walks you through exactly how to phrase the query to get the most up to date and relevant information for the disease you are researching. Most of the articles are available for a fee; however, there is free access to the abstracts that break down the study and state the findings. Older research articles can be accessed for free. Personally, I have found that just reading through the abstracts has given me the information I was seeking without having to sort through the medical lingo.
As an aside, I have also used the websites of drug manufacturers to learn more about the medications I am on, potential side effects, and when I should call a doctor about potential problems with the medicine. Thankfully, I have only needed to consult the sites for information on side effects and have not had any significant reactions. It is always good to do a little poking around on the drug manufacturers sites to learn more about the medications you are on and what to look for if a potential problem may arise.