But You Look So Good . . . Stories by Carcinoid Cancer Survivors

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.

But You Look So Good . . . Stories by Carcinoid Cancer Survivors

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.”

Maria Gonzalez, author of But You Look So Good . . . Stories by Carcinoid Cancer Survivors

Maria Gonzalez, author of But You Look So Good . . . Stories of Carcinoid Cancer Survivors

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 [35].  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.

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16 Responses to But You Look So Good . . . Stories by Carcinoid Cancer Survivors

  1. pat risch says:

    This is a wonderful book, couldn’t wait until it came out, it have a wealth of information, written very well I look at it to ref. Info. I recommend this book to any carcinoid patient,caregivers, and your PCP so they can understand this rare cancer

  2. Jackie says:

    I was passing gas alot and blood, now in two weeks I meet dr and see its in my anus and 2 lungs and yes I am scared witless

  3. Judy says:

    Had colonoscopy done June 12 and had two polyps removed. One was positive for benign carcinoid tumor in rectum. Had CT scan of stomach and pelvis which came back good. And EGD which showed nothing. Now chronograph A and Serotonin test done. Will get results back in 3 to5 days. Is this normal procedure?

    • Jackie says:

      Went to oncologist yesterday, no hope , in my 2 lungs , anus and rectum , can’t operate or radiom, as its at extensive range and just spreading to quickly, since 4of July and not even a month later no hope, all I has was passing gas and then a little blood, not the nicest cancer to get, but for those who can get a cure and surgery are so lucky, to those who meet drs who have worked with this before are so lucky, for me telling my kids hardest thing I have ever done in my life,

      • Hi Jackie, we are so sorry to hear that your carcinoid has spread. Is your oncologist a carcinoid/NET specialist? Sometimes specialists have other options that physicians who don’t work with many NET patients may not be aware of. Please call us at the Foundation, 888-722-3132, Eastern Time, if we can be of help in any way.

      • jackie says:

        how can i think i am dying when my only symptom is passing gas, otherwise i am perfect, how can they tell me i cant have surgery, i cant even try for a cure as its in extensive range, i am so out of sorts with this,, i cant accept this i feel like i am the living dead at the moment, no pain, no ache, no temperature and no help,, what a place to be,, not having a good time, i will have to go seek someone to talk to on monday, the joys of living in ireland no one knows nothing and no one works weekends,, my luck lol,, sorry for going on but i am just searching and searching internet for something,, anything to help me sort this out

      • pat risch says:

        Jackie, I can’t understand why the doctor said no surgery. I had that told to me once when I had liver tumors next to the dome of the liver, and next to my diaphragm I went to my ONCOLOGY surgeon, and I had my surgery. At this point I have no new tumors. First look for a oncologist that specializes in carcinoid, and that goes for a surgeon that knows carcinoid and the meds they need in the OR IF you have the surgery. MARIA S BOOK IS GREAT TO LEARN. WE ARE ALL DIFFERNT WITH THIS CANCER. I ONLY HAD ACID REFLEX WHEN MY DOCTOR SAID YOU NEED TO SEE A GASTROLOGIST, DID, AND FOUNF THE TUMOR ON MY PANCREAS TAIL, REMOVING THE TUMOR, AND MY SPLEEN, AND I HAD TUMORS SPREAD TO THE LIVER I AM NOW GKING INTO MY SEVENTH YEAR. WE WILL NEVER BE CANCER FREE, BUT YOU NEED A GOOD ONCOLOGIST THAT KNOWS THIS CA VET. PRAYING FOR YOU

      • jackie says:

        we dont have surgical oncologist in ireland, i had said to oncologist about going back to surgeon , she said no good, we have medical oncologists, she said i was at extreme stage, what ever that means, ireland small country so i will have to take what she says as my diagnosis, i want it all cut out, its a t4 tumour in my anus and rectum, 2.4 cm in one lung and 4 mm in other lung, and i have no chance at all by all sounds of things, and i feel so good, i have no symptoms so find it so hard to believe they are only giving me a few months,, devastated to sit here and think, wont see my kids do college,,marry all that,, would love to talk to a dr from overseas but have tried everywhere, and nothing seems to get me to a page without spending money i dont have

      • pat risch says:

        We have doctors that you could see Call the Carcinoid Foundation call to see if they can help finance your coming, and seeing Dr Woltering at NOLA he is a great doctor and has a wonderful team of surgeons. I don’t have the number but do you have Maria’s book it gives all kinds of numbers for help I will pray that something will happen for you to get help

      • jackie says:

        i will try to get her book on monday or order it , thank you so muc for your help,,,

      • Tracy says:

        DR. EUGENE WOLTERING
        Ochsner Medical Center – Kenner
        180 W Esplanade Ave
        Kenner, LA 70065
        504-468-8600

        Jackie he is amazing, We travel over a thousand miles to see him every 6 months. My husband saw him for the first time last year and had a 9 1/2 hour surgery by one of his surgeons last June. His tumors were in his abdomen, liver, rectum, pelvis, testicles, ureters and several throughout his entire abdominal cavity.. Like over 100. He was so bad off that he was told had he not had surgery he would not be here this year. But was also told by previous surgeons and surgical oncologists nothing could be done. He is now one year post op and just recently had a tests done. He has only one tumor in his abdomen. Still has normal symptoms such as flushing, Diaherra, Hot flashes, Rash, nausea but is still in pretty good shape.

      • Jackie says:

        I have found a surgeon and thinks I may be able for surgery, petscan machine down this week but hopefully early next week, and some chemo and if that helps I can have surgery so much more positive having this man on my side, will let u know out come, thanks so much for your support in my most stressful time

  4. Tracy says:

    Jackie,

    I also wanted to say that you may be eligible for clinical trials that could be fully funded. You need to try to join a support group local or an online support group. Never give up and never loose hope. Alot of it is mental and your attitude. My grandmother lived with Stage 4 Breast cancer that could not be removed at 70 years old she lived for another 12 years.. I belive it was only because of her dementia she did not even realize that she had it. As for your kids… our girls were 3 and 6 years old.. SO I can understand the fear.. Right now just live every day to the fullest and spend every moment with them that you have. Also only share with them age appropriate stuff be real but be positive.. They need that. Let them know they do not have to always worry that you will keep them informed. If they need counceling dont hesitate. My youngest did a few years in and we got it for a few months and she is fine now. THE LAST THING I WANT TO SAY IS GOD IS OUR ULTIMATE HEALER. THERE IS NOTHING THAT HE CAN NOT DO. IF IT IS HIS WILL IT WILL BE DONE. I WILL BE PRAYING FOR YOU DAILY AS WELL AS MY ENTIRE CHURCH..

    • Jackie says:

      I have been trying for clinical trials but can’t fill in answers as they have not told me clinical terms what I have there is no such termology for the words they use here in Ireland lol,, a class of our own,,

    • Jackie says:

      Tracy I can’t thank you enough for your kindness means so much to me

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