Living with a NET

Grace's Story

My symptoms started about 15 years ago. I was being treated for colitis because I had a lot of bloody diarrhea. I was losing weight. So I was given a steroid. My symptoms continued to come and go, and I didn't really think much of it. Then when I was going through menopause I had hot flashes, I said, "Well, that's just part of life." But the years went on and the hot flashes didn't go away. In fact, they got worse.

Then around 2005 I started getting weaker, losing weight, and having nausea and diarrhea. I thought I had the flu or that the colitis was coming back. I worked 5 minutes from my home and just driving there took me a half hour because I'd have to pull over and rest.

I went to the doctor thinking I had the flu and he gave me some medicine that didn't work. Finally he said, "Well, I'm going to send you to a gastroenterologist. It may be nothing, it may be an ulcer. We don't know." So I went to a gastroenterologist, and he did the 24-hour urine test and a CAT scan of my liver. That was how they found tumors in my liver. He told me I had carcinoid cancer and that I probably had about a year to live. He was very sorry and he was a little teary. I was kind of teary and my husband was really teary.

So, overall, my diagnosis involved a 5-year span, my family practitioner, a colorectal surgeon, my gynecologist, and a gastroenterologist. The gastroenterologist put me in touch with a wonderful oncologist who told me, "You're not going to die in a year. We have ways of treating this."

He gave us a couple of options and a couple of doctors that we could go see. But we had to tell the kids first. That was the hardest thing, but they handled it pretty well. They were sad, but we said, "Well, we're going to fix this. You'll see."

Now that I've had surgeries and I've been living with this for a while, I have a basic routine. I see one doctor who kind of maps out the master plan. Then about every 6 months I have a CAT scan of my liver. A liver surgeon tells me my progress and what's going on there. I see a cardiologist who works with a lot of patients with carcinoid cancer. He checks on how the valves are progressing and my overall heart health. I also see a local oncologist who makes sure that I get my shots, my pills, my infusions, whatever I need.

My husband is my caretaker. He is the one who obsesses over every doctor's appointment. He's got a bag full of the latest blood work, any kind of scans, and he updates every doctor. He's the one who measures out my pills. He does my worrying for me. And for anyone who has cancer and a caretaker, tell them you love them every day and every time you can show appreciation for them, do it. Because they are your lifeline more than anything.

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Myra's Story

I had been diagnosed with Crohn's disease in the early '90s and had been on a lot of medication for Crohn's disease for many years. My symptoms were a little different in that I had vomiting. I would throw up for a 24-hour period. It would come on every couple of months. I'd be fine in between episodes, but then within a couple of months, I had a lot of abdominal pain. I began to know when the attack was going to come on. So I saw a lot of primary physicians who were very puzzled; they had me write down everything I was eating. We weren't really getting anywhere.

I've learned that there is no one doctor who has the answer. You really need a team of doctors. The experts will tell you that. And it's so true. You need the surgeon and the medical oncologist; you need the combination of doctors to really help you make the best decisions. You have to listen to what everybody has to say and then make your own decision. And that's difficult.

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Thoma's Story

My support group is important to me. Every person I've met or contacted who's had a lung carcinoid has a different story, even though they started from the same place: a typical carcinoid that's supposed to be removed and done. I want to learn as much as I can because, in case it does come back, I want to know what information is available. I want to know what the disease is, and the support group has been tremendous in that way.

Taking charge of my own information and health care has been the single biggest thing that I've learned at the support groups. Because carcinoid is so rare, there's a lot of misinformation about it, particularly in the medical profession. Some doctors don't even consider NETs to be a malignancy, a cancer. My own doctors were very up-to-date on carcinoid. I was fortunate in that way. And yet, when they say, "At this stage it's a wait and see thing now," I'm not comfortable with that. I want to know what I can do proactively to catch it before it grows again.

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Barbara's Story

I was having various symptoms for more than 10 years. In 2002, I was under the care of a leading carcinoid physician in Manhattan who sent me for a battery of tests. I had an Octreoscan, which came back negative; I had a small bowel series, which came back negative; I had a capsule endoscopy, which the insurance would not pay for, which came back negative.

Only a CAT scan showed that I now had tumors in my appendix as well as outside of my ileum. I had 2 colonoscopies. The doctor did repeat biopsies on them, rooting biopsies even, and nothing came back showing anything. Had it not been for the perseverance of this specialist, I probably wouldn't be here today.

I had surgery in April of 2003. I had a bowel resection, my appendix removed, and 2 lymph nodes removed, one of which was positive for carcinoid. I had surgery again in June 2009.

You must be your own advocate. You must research your illness. If you're not happy with what one doctor says and you have any doubts at all, go to another doctor. If you have any symptoms, you must be attuned to whatever's going on in your body.

It's very important to build your own support group around yourself. It made me feel comfortable knowing that there are other people who understand my illness. You need to know your own limitations and any accommodations you have to make in your own life. For instance, I won't go out in the morning after eating to take care of errands because of my irregular stomach. I say to myself, "I'm far more comfortable eating after I've done whatever chores or errands I have to do." So there are things you have to do to make accommodations, large or small, in your own life.

But most of all, I want to give people the hope. I have been now an almost 20-year survivor of carcinoid. I want to let people know that, despite a diagnosis of carcinoid, you can still lead a very productive life, even after many years.

At first, I said if I make it 10 years, I'm going on vacation. Then I realized when I had my surgery this summer, "Gee, it's almost 20 years." So I planned a trip to mark 20 years. And my son said to me, "Mom, after that you'll start thinking of what you're going to do when it?s 30 years."

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Maryann's Story

My journey began in 1994. I began having severe abdominal pain and rectal bleeding. I went from doctor to doctor, having colonoscopies and endoscopies done. In 7 years I went to 7 different doctors. They told me I had irritable bowel, ulcerative colitis, Crohn's disease, fatigue. They said I needed more fiber in my diet.

Finally in 2001, when my last GI doctor did a colonoscopy he found a tumor in the ileocecal valve. It was approximately 1.7 centimeters. At the time, he didn't know it was carcinoid. He said we found the source of the bleeding, and he removed the tumor. The biopsy came back carcinoid.

The surgeon then removed part of my small intestines, my large intestines, my appendix, and my ileocecal valve. In 2002, I was still having symptoms, so they took out my gallbladder.

Because I had the surgery and continue to get the proper treatment, I live a full, active life now.

My advice to any patient who has been treated by a doctor who says they can't find anything is to keep looking. You know your own body. Don't always take the doctor's answer for granted. Search the Internet, search for doctors to get an answer. Had I not continued my search, I don't know if I would still be here today.

You become your own advocate. You must fight for your treatment. Keep pursuing and making sure that you get your proper treatment.

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  about living with NETs

  When you join the NET Community, you can share your experience with a NET with other patients around the world. If you're already a member, log in and learn how you can share your story and connect with other NET patients.

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