Julitina's Journey:

Patient: Small Intestine Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 10 years ago, Female, Age: 65

  1. 1
    • Julitina
    • Experience with Small Intestine Cancer
    about 8 years ago
    Julitina's Avatar

    Oh No

    Coming awake from my second endoscopy in two years, a little foggy headed, I heard the gastroenterologist remarking that he found nothing "remarkable". I had heard that before. This info did nothing to stop the recently more frequent extremely painful episodes of upper left abominable pain, radiating to my back,so severe I would vomit, and cry out to God for relief. These episodes began six years prior to this endoscopy. This December,2010, they were occurring two or more times a week. I worked in retail, so this was a crucial time of year at work, but I was in misery every day. The pain was not letting up during the day, now. I had been given Vicodin and Prilosec. I was getting through the nights by taking the Vicodin at the earliest onset of pain. This got me through those pain filled nights, but I knew something was definitely wrong! I vowed to go to the doc again. I had made infrequent trips over the last 6 years, having heard that blood tests, endoscopy, and even the sonogram in 2004 had shown "nothing remarkable". I had blamed my bad eating habits, stress, etc...but, recently I had followed a healthy eating plan, exercising, not indulging in holiday treats. I religiously took Prilosec, again blaming myself for stopping it in the past when I "felt better". When I saw the Internal med Dr., who had become my "primary", we went through the same drill. Questions, my same answers, then referral back to the gastro doc who saw "nothing remarkable". I remember saying that I was relieved to be past 50, because both my maternal aunt and my mom had both been diagnosed with cancer at age 50. My primary doc stated with certainty, " this is definitely not cancer, you have been having these symptoms too long for it to be cancer. I felt reassured, but wondered if stress, or ??? Could actually cause all this extreme pain and vomiting. Gastro doc laid out same plan of action as before, endoscopy, but this time also sonogram, and another test which would test gall bladder function. (Even though pain was on upper left side). Fast forward to where I started , waking up from endoscopy, sonogram was completed 2 weeks earlier. I hadn't heard anything about it, so thought must have been"unremarkable". Gastro doc completes unremarkable comment, I think I said why am I having so much pain, these frequent episodes...when he walked away. My husband was now with me, as I dressed to leave, gastro doc returns. He has strange look, he apologetically says, I just now saw sonogram results. You have multiple liver lesions. I thought it was just some slight gastritis... You will need to have a CT scan as soon as possible, and other tests. Still foggy headed, I had little reaction. I wasn't sure what lesions meant. What, a liver infection? Well, it would explain the symptoms I had. But pain was in upper left side?? I felt numb, had more questions than answers. I was in denial. I was scanned next day. I asked the tech how soon results would be available, he assured me doc would hear by afternoon. I still felt numb. I was healthy, other than these episodes. I exercised most of my life, ate healthier than most people I knew, didn't smoke, drink alcohol. How could anything be wrong with my liver. When I pressed gastro doc for answers, he said these lesions were from somewhere else, not just liver lesions, they had spread. I was so angry. This sounded like cancer, but it couldn't be. These tess were wrong, I didn't feel that sick... I broke down when I saw my husband. He told me just go have nails done, don't think about it. Let's get all the informatio, it probably isn't what we think. At nail shop my cell phone rang, I wasn't expecting to hear from gastro doc until late afternoon or evening. It was him, without excusing myself to take call outside I just said this is important call and answered. He told me what I did not want to hear. Yes, there are multiple lesions on both lobes, ranging from 6 cm to smaller ones. I asked questions still in unbelief. I argued couldn't these be just abscesses? He began to tell me these came from somewhere else, that I must have many other tests, mammogram, Pap smear...he gave me name of oncologist who he had already contacted...I argued, how do you know it is spread? Conversation ended, I was shaking. I felt numb. I don't remember driving home. I remember reasoning that this could not be true. I broke down , crying at the first sight of my husband. He was very positive, we will get through this, we trust God, you will be alright. It isn't cancer, he assured me, it can't be. The Doctors are wrong. This is a mistake. Let's get more information. The next weeks were a blurr. I worked, went for numerous tests, pet scan. In my denial, I wouldn't make an appointment with the oncologist. I looked up all references I could find on the Internet on liver lesions, trying to find the least negative scenario. Most information pointed out that liver cancer was rare, that cancer usually had metastasized to liver, leaving very poor prognosis. Test results trying to find a primary were all negative . Pet scan showed "narrowing in illeal-secal valve of small intestine. This meant nothing to me. My husband calmed me urging me to talk to our primary doc for reassurance that this wasn't cancer. We both went and heard the doc assure us that it must be something other than cancer, due to my symptoms having continued for 5-6 years, I finally agreed to go to oncologist, only after a CT guided biopsy on liver tumors came back as carcinoma. The oncologist recommended yet another scan, short name is Octreotide scan. This would reveal if these were neuroendocrine tumors. A very rare form of cancer which could be slow growing, and had common primary in small intestine, also matching pathology reports from liver biopsies. Although the biopsy, now checked by two pathology groups showed aggressive tumors. This scan took three days, being injected with radionuclides then scanning in 24 hour intervals. The results came back positive for neuroendocrine tumors, including probable primary being in small intestine . I read all I could find on cancer in small intestine, neurendocrine cancer,which led to the term,"carcinoid cancer". I held fast to this new information, reading that some with carcinoid tumors metastasized to liver had lived for years after initial diagnosis. This very rare cancer could be very slow growing. I informed my oncologist that I was praying my diagnosis of aggressive growth was wrong. I saw oncologist at UCSF who agreed this was stage 4, aggressive neuroendocrine cancer that must be treated with strong course of chemo. He told me to stay hopeful. The chemo time was difficult, but I had some intense times of prayer, trusting in God's love. My local oncologist seemed, well, for lack of better word, excited that I had a very rare form of a rare cancer. He said do you know how rare you are? I began to read as much as I could on neuroendocrine cancers called carcinoid in some writings. I hated the chemo, I went from feeling "normal" to being sick most of the time. I was told 4 rounds of chemo, then I would see oncologist surgeon for possible surgery. I thought I could get through this. Many very stressful things were going on in my family, but God sustained me through it. I felt loved by God through the most difficult times.i was lead to chapters in the bible that encouraged me. So many friends and family prayed with me, for me. I knew my hope was in the One who loved me with a perfect love. He was sustaining me, I had hope, I had faith that no matter what the medical diagnosis was, I would be fine. My hope was anchored by my faith in Jesus Christ, my Lord. After the fourth round of Chemo, with numerous visits to oncology office for blood work,showing my failing immune system. This required numerous injection to boost my immune system. This process consumed my life, my time. At my fourth round, I was told to go for another PET scan, and another octreotide scan. Then my oncologist matter of factly stated that I would need to complete 12 rounds of chemo. I had gotten through this much holding to the fact that after four, I would go to surgeon. I thought that would be end of chemo. (Chemo was Folfox, and I was on a 48 hour pump, through the port in my chest.) After seeing results of PET scan, showing growth, not shrinkage of liver tumors, I confronted my oncologist. I did not want any more chemo. It was ineffective. I was having the upper left abdominal pain more frequently, felt "chemo"sick and wanted to find out if surgery was possible. Oncologist said he saw improvement in blood and urine test,( chromagrannin, and 5h1aa), so he convinced me to have one more round, then sent me to UCSF for consult with oncology surgeon, and oncologist specialist for 2nd opinion. I trusted God, but did not know what to expect . My husband drove with me to UCSF. I went to that appointment with little hope for my future, other than a miracle from God. I saw both oncologists, answered their questions, then they said they each needed to review and compare scans done when first diagnosed, and recent scans. After waiting some time, the surgeon came to speak with both my husband and me. He had the most wonderful news. He said that although the two teams of pathologist saw aggressively growing tumor cells, this cancer was not acting aggressive . The chemo should have worked on the more aggressive neuroendocrine tumors, it hadn't. He said they wanted to operate to find and remove the primary cancer, which was very likely in the small intestines. This should help relive the painful episodes and vomiting. He told us that there was a treatment to help control symptoms of this type of cancer that could be considered after surgery. He said they thought my gall bladder should be removed as a precaution to prevent gall stones caused by octreotide medication I should take after surgery. He would operate as soon as my blood counts were healthy enough. That happened about a month later, on July 5,2011. The surgery removed the illeo-secal valve part of small intestines connected to colon on right side, also removing section of large intestine ,(colon), 18 lymph nodes, appendix and gall bladder. Pathology showed 7/18 lymph nodes positive for cancer, appendix had cancerous tumor, golf ball sized tumor in small intestine.(oh, the endoscopes, and colonoscopy never showed any abnormalities... I was told this was because this type of tumor grew outside of intestinal wall, pushing in, causing narrowing..pain, vomiting was probably from this. Still wonder why pain was specifically in upper left side , radiating to back. Tumors were on right side...but both lobes of liver had numerous tumors. More biopsies of liver tumors were done at time of surgery. Follow up appointments revealed that newest biopsies showed intermediate growing tumors. Surgeon said that liver was inoperable. Tumors were all over both lobes. I was still ecstatic with new "intermediate"growing diagnosis. After recovering I continued having abdominal pain and daily diarrhea . I still felt good, was walking, exercising and so grateful to be alive. I was put on monthly octreotide injections which were to help control the effects of excess serotonin produced by these neurendocrine tumors in my liver, thought to be causing the diarrhea. The dosage was increased to above recommended dosage. Blood and urine tests continued to show increasing amounts of by product of excess serotonin. Diarrhea became part of my life. Bouts of pain, then extreme fatigue made me question continuing the octreotide, especially since blood and urine tests showed no improvement. Every three months I had scans, monthly blood and urine tests, tumors had grown,30% in year since initial diagnosis. Not great results for octreotide. I was told it may control growth. Back to UCSF, saw neuroendocrine specialist. I rejected the idea of some clinical trials. Most had flu- like side effects. Finally, after another set of scan, blood work showing increased chromagrannin levels, failed attempt at liver directed thermosphere therapy, I was again referred to surgeon. Same surgeon who did not think surgery on liver an option now believed it to be best option. Hallelujah! Hope to feel better! I was told best to do something now, rather than allow more growth making surgery impossible. The left lobe had largest tumors, so surgeon said he would remove that lobe, and see what was possible when he got to liver. Surgery was September 7, 2012. The last 21 months had been difficult. 6 months after I was diagnosed, right around time of first surgery, my husband had been laid off after 7 years working for one of the biggest tech companies. We were thankful he was able to help me through the time of recovery from surgery. Finding a job was his job, but it took all that time, nearly 14 months, to find work. We were both not working, and were losing our home. He got a job the day after my surgery was scheduled! We had so much to be thankful for. Now,four months after surgery I am very hopeful for the future. I am not sure what treatments will be next. We did have to move out of our home of 12 years. We are survivors in life. We are always hopeful because we trust in a God who holds our future. I've had a deep vein thrombosis (in my jugular vein from the chemo port),colitis, sprained ankle... But every time a scan shows only things in my liver, I am thankful! I could be in the record books, surviving longest with "intermediate growing tumors". Carcinoid foundation web site has been so helpful, great info. Thank God for the Internet, so many reputable sites with the latest medical information. Not sure if this info is helpful to anyone else or just cathartic for me.