The intimate stories of those living with a poorly understood and rare cancer are shared in Maria Gonzalez’s new book, But You Look So Good . . . . Stories by Carcinoid Cancer Survivors. Over 20 patient and caregiver stories explore how carcinoid and neuroendocrine tumor (NET) patients came to be diagnosed, many enduring years of symptoms and lack of a proper diagnosis or no diagnosis at all; surgical experiences; the challenges of living with carcinoid syndrome; the value of in-person and online support groups; seeking information about these rare diseases; what it’s like for the families of patients; and hopes for the future.
The book also offers information on tests, markers and scans for NETs; a list of the various types of neuroendocrine tumors, including pancreatic NETs, pheochromocytoma and multiple endocrine neoplasia (MEN); tips on how to manage symptoms; side effects of medications; dietary recommendations; complementary and alternative medicine; quality of life issues; and coping. Specific issues for carcinoid patients, such as carcinoid crisis and carcinoid heart disease, are addressed.
The author, Maria Gonzalez, is both a breast cancer and carcinoid survivor. She has had a career in nursing and medicine, including internal (multi-specialty clinics), primary care, and emergency medicine. She has worked in hospice and home care, and currently volunteers in a free clinic serving the uninsured and underserved. According to Maria, her book is “intended to provide information to those with suspicious symptoms which may aid in finding the correct diagnosis,” to help readers “come away with a deeper understanding of what NETs are and how people cope with these cancers,” and to “help raise awareness, perhaps save a life, and empower survivors and caregivers to maintain quality of life by becoming self-advocates.”
Here are some excerpts from the stories that give a first-hand look at living with neuroendocrine cancer.
Denise: “It all began in the spring of 2009. I became very sick with bad diarrhea, throwing up and feeling really bad all over. . . . I have tried to explain to the people I know about this type of cancer. I might look good which I am told all the time, but they do not know what I feel like on the inside. . . .I am learning that even though we all have carcinoid, each case is different but yet we all share something. The people I have met online understand me and what I am feeling or going through.”
Dennis: diagnosed in 2000
“I daily thank God for life, my caregiver, my whole family, my support system, and am grateful for all. I will be 66 in March. I never expected to live this long.”
Anonymous: diagnosed in 1999, now age 79
“I am 13 ways tough! I was diagnosed in January 1999 when a routine colonoscopy revealed a tumor at my ileocecal valve. Pathology of the tissue revealed it was carcinoid. . . How do I cope? Well, I try to eat nutritious foods such as oatmeal, fruit, vegetables, fish, and skim milk. I make myself exercise almost every day. I live at a retirement community in an independent apartment. . . .It takes courage to live in a cancer-ridden body.”
Amy: “The words ‘you have cancer’ are probably three of the most profound words I have heard in my life. I remember bawling in my mom’s arms telling her ‘I don’t want to die. I am too young . I have two babies.’ At the time I had three and four year old boys. . . .I choose to be a survivor, to become educated, to take control of my medical care. I am no longer a victim at an urgent care center. I also now reach out to people who get the stomach-punching news of their own cancer diagnosis.”
Bill: diagnosed in 2002
“My experience with carcinoid cancer began in January 1995, although I did not know it at the time. I had a heart attack followed by a couple of small strokes. The medications prescribed by my primary physician masked symptoms we now recognize are related to carcinoid syndrome. The doctor expressed the opinion that my flushing and diarrhea were related to undesired but not unexpected effects of the medications I was on. . . . Believing that every life story should have a moral, or at least a purpose, here is my encouragement to anyone reading this and trying to learn more about carcinoid cancer. Take responsibility for your own body! Get another opinion. Don’t wait too long! Don’t let the condition dominate your entire life. As long as you are alive, live!”
But You Look So Good is available in paperback and a Kindle edition at amazon.com. Click here to order a copy and read the complete stories of these valiant men and women living with neuroendocrine cancer.