My Journey with NeuroEndocrine Cancer

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Six months ago I heard the word carcinoid for the first time. I had a mass in my appendix and had been waiting for 40 minutes beyond our appointment time in the exam room of the colorectal surgeon who was going to remove it. My husband had left work to be with me; we were both anxious.

Two minutes later the doctor arrived, introduced himself and said he’d been studying my scans with a radiologist for the last hour trying to determine what I had. I guess you can forgive a doctor who’s not with you but still working on your case.

I told him my symptoms that brought me in: right lower abdominal pain and diarrhea for several months. Neither of those had ever erupted to the point of emergency, and since there didn’t seem to be inflammation on the CT, no one thought it was appendicitis. He poked my belly in that spot they check for that, but the pain seemed lower. He said, “It could be carcinoid, but that doesn’t seem to fit your story.”

He used that phrase “my story” a lot in the next six weeks. I know he meant my case or my symptoms, but to me it sounded like he didn’t believe I had the symptoms that brought me to the doctor in the first place or that they were unrelated to the mass in my appendix. The scans didn’t show any tumors in my liver, and he said carcinoid symptoms generally don’t manifest unless tumors have spread to the liver.

You can bet that I went right home and looked for more information about carcinoid online. Confusion surrounding symptoms often manifests itself during the diagnosis stage of carcinoid cancer. But i didn’t learn that right away. It took weeks and months of educating myself about this rare disease.

I received a confirmed diagnosis of carcinoid or neuroendocrine tumors six weeks after my first GI appointment. Three surgeries in six months revealed a primary neuroendocrine tumor in my appendix, metastatic tumors in the regional lymph nodes and implanted metastatic tumors in the pelvis.

Some of the best sources of information have come from carcinoid.org, where I also found links to join an email list at acor.org. This has been a valuable daily source of information from patients, survivors, family and even a leading NET specialist. I liked and followed a number of these similar sites on social media and immersed myself in learning. I hope you will, too, in recognition of NET Cancer Day – A day of worldwide awareness of NET Cancers.

Carcinoid neuroendocrine cancers are relatively rare malignancies distinguished by small, slow growing tumors which affect the neuroendocrine system. These tumors typically originate in the gastro-intestinal tract, but sometimes arise in the lungs or other organs. Incidence is around 4 persons in 100,000 – but in many parts of the world the disease is under-diagnosed. — from the ACOR carcinoid site.

I’ve chronicled my emotional and physical experience over the last six months of diagnosis and treatment here on my blog. Links to each post are listed in order on my timeline of illness below. They also express the hope I’ve found in my experience with carcinoid or neuroendocrine cancer. My hope comes from three sources: Information about my disease, faith in Jesus Christ, and the support of family, friends, doctors and nurses.

March – Met with gastroenterologist for bowel changes, persistent diarrhea and a right lower abdominal pain that came and went for a few months. Thought it was celiac, which my sister has, or just IBS. Blood test, CT and colonoscopy ordered. I almost didn’t do these. It seemed like a lot of time and expense for a little diarrhea. When I wavered, the doctor asked, “Are you going to go through with this?” I did, and it saved my life. The CT revealed a mass in appendix. Had an MRI, too. End of the month, met with a colorectal surgeon. He’s not sure what the mass is, mentions possibility of carcinoid. In my research, I’m sure this is what I have as I wait for my surgery date.

April – Had an appendectomy in the middle of the month. Pathology revealed a 1.7 cm carcinoid or neuroendocrine tumor. It’s invading the nerve cells around it. New surgery scheduled to remove part of my colon.

My thoughts at the time:

A health crisis will not rock this memorial of faith.  April 24

Ask in prayer for tender mercies April 28

Five ways to reach out when a friend is suffering May 12

May – Had a right hemi-colectomy. Yucky surgery. Removed 1/3 of my colon and reattached large intestine to small intestine. Was in hospital 4 days. Went home but couldn’t stop vomiting. Returned to the ER for a possible bowel obstruction. Later that week I learned that tumor has metastasized to the regional lymph nodes.

How I was coping:

Gratitude: The answer to a cancer diagnosis? May 24

When the caretaker needs care May 29

June – Referred to a local oncologist and met with him to review more information about the disease and determine a monitoring schedule of blood work and scans over the following months.

The healing process:

Defined by faith June 16

Better, but not back to normal July 10

July and August – Had first round of CT scans, which reveal cysts in several places but no visible tumors. Experience two or three episodes of flushing and other carcinoid syndrome symptoms.

October – Have my annual physical with primary care/OBGYN. An ultrasound reveals a large ovarian cyst that needs to be removed. During surgery my OBGYN finds and removes two more neuroendocrine tumors that have implanted in pelvic wall. Schedule an appointment to meet with a specialist at the University of Iowa, which I’ve discovered is an essential step for every NET patient to receive a second opinion about their disease, identify treatment options, and have access to a doctor fully knowledgable about all aspects of this rare disease.

Where I am today:

I may have cancer but my life looks pretty normal October 30

It’s interesting how a diagnosis can open a person to new communities, new information and new perspectives. All of these have eased my anxiety and reinforced my gratitude for life. Real life challenges, like cancer, invite me to replace fear and self absorption with courage and compassion.

A final note: Some carcinoid patients express disdain for doctors who may not fully understand this disease. Even with the example in my opening story, I still respect each and every one of my doctors. They acted quickly and as thoroughly as they could with each incident. Some symptoms along the way have been minimized, but I have armed myself with information from the specialists and persisted. I’ve found this the best way to extend awareness and bring about change on any topic in life, even in the medical profession.

If you would like to donate to neuroendocrine tumor research, here are three avenues:

The Healing NET Foundation

Caring for Carcinoid Immunotherapy Initiative 

LSUHSC Foundation 
Nets research in memo line
Send to Eugene Woltering 
200 West Esplanade Suite 200
Kenner, LA 70065

 

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6 Comments

  1. Camille
    Nov 11, 2014

    Amazing how researching and writing can lead us to inspiration and understanding! Putting the whole story together I’m sure has been eye opening for you. It’s helped me see the whole picture of your journey. Love and prayers from my little corner of the world. I love you!

  2. Lydia
    Nov 17, 2014

    Thank you so much for sharing your story. My tumor was in my appendix as well and although we have different stories I can definitely relate. It’s nice to hear what we eel is “normal”.
    I wish you all the best in your journey.

  3. Bridget Smith
    Nov 17, 2014

    Thank you for sharing. We have found metastasis in the liver, but no primary yet. It may be that I have the undifferentiated NET, which makes it harder to find. I am trying to get into the NIH/NCI 68GA study. Also, would like to get into University of Iowa as you did. Wish me luck.

  4. Suzanne graham
    Nov 17, 2014

    Thank you for sharing your story. I had a blockage in my intestine, had never heard of a carcinoid cancerous tumor until the pathology report. We go back to Vanderbilt for testing the first week if December. Just wanting answers, and see what happens next!!! Thanks again for helping to subside some of my fears. God’s got this!

  5. Barbara B.
    Nov 18, 2014

    I’ve never responded to a facebook story, but feel compelled to share my story with you and others. I have been living with carcinoid now for the past 24 1/2 years, which may be a record! I tell you all this to encourage you that even with bumps in the road (my first tumor was low in my intestines or rectum area, discovered by chance, followed by a tumor in the appendix, a positive lymph node, a tumor outside of my colon, necessitating a bowel resection, plus two carcinoid tumors in my ovaries, discovered by chance while having a stromal sarcoma tumor removed from my uterus.) The point of my story is that you MUST be diligent about repeat CAT scans, blood tests, octreoscans (mine are always negative!) and injections of sandostatin. The incredible part is that my first tumor was not connected to my second one, even though THAT tumor has metastasized. It was like being struck by lightning twice in your life. But I have made it through so many milestones and events in my life which I wanted to live for, and I hope my story will serve as an inspiration that it is possible to LIVE with this cancer for a long, long time, and you just need to deal with the setbacks when they occur, and they may, and then move on. But MOST important is being informed as many in the medical profession just don’t know enough about this disease, knowing your body and changes, having a doctor who believes you and following up with all required tests and treatments! GOOD LUCk TO ALL WHO READ THIS!

  6. Donna Mitchell
    Jun 30, 2015

    I was diagnosed on June 9th with neuroendocrine carcinoma. My tumor is on my vena cava. It is the size of a softball. My surgeon at Wake Forest says when they remove it they will have to remove part of my favorite intestines, part of my psoas muscle and part of my vena cava.
    All of this seems to be happening so fast.. I was in the gym working out the Friday before memorial weekend and my side was hurting really bad ..it had been hurting off and on for a few months…but that day in the gym I was certain my appendix were going to burst any second. Left there made a doctors appointment. They could see me at 4 by 5 they were sending me to the ER for a blood transfusion and ct scan of my appendix. They found a mass. Another ct scan with dye and contrast. By 11 that night they were consulting with an oncologist. I had to spend the night in the hospital so I could receive two blood transfusions and a bag of iron. At 8am my oncologist was waking me up telling me to prepare for the worst but hope for the best. The next Wednesday I had a biopsy. Now I have found a surgeon willing to do my surgery and I’m having a MRI Wednesday. This is scary. I wish I had statistics on this surgery.

    Donna

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