susie54's Journey:

Patient: Cancer of Unknown Primary > Neuroendocrine Carcinoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 5 years ago, Female, Age: 59

  1. 1
    • susie54
    • Experience with Neuroendocrine Carcino...
    over 4 years ago
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    Diagnosed

    Oh No

    Confirmation of diagnosis of Neuroendocrine Tumor of Liver. Suspect that primary tumor is gastrointestinal, but doctors have not ruled out that liver may be the primary. Biopsy was unbearably painful and was not managed appropriately in terms of pain relief by hospital. Spent 2 weeks as inpatient in a different hospital post biopsy.

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  2. 2
    • susie54
    • Experience with Neuroendocrine Carcino...
    over 4 years ago
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    octrotide acetate injections

    Drug or Chemo Therapy

    So happy that this drug exists. I have been giving myself injectons since March 3 times daily (100 mcg/ml). Very expensive drug and had to be ordered in advance because apparently drug stores do not keep in stock. I noticed that most people with neuroendocrine tumors taking this drug take it once a month with much larger dose, known as octreotide LAR. I have questioned my endocrinologist about changing over to this.

    Easy to Do: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  3. 3
    • susie54
    • Experience with Neuroendocrine Carcino...
    over 4 years ago
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    Endoscopic Ultrasound w/biopsy

    Procedure or Surgery

    Had EUS to find primary. Already had Octrotide Scan and CT scans etc. Primary was suspected in pancreas. When awoke from procedure I had difficulty clearing my lungs for a half hour. No one attended to this and I thought it was normal.... Was told by Dr who performed procedure that pancreas was normal and no other tumor found aside from liver.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    • susie54
    • Experience with Neuroendocrine Carcino...
    over 4 years ago
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    Problem with doctor

    Oh No

    feeling very frustrated with all of my doctors. Went to Sloan Kettering for second surgical opinion and they ordered another CT scan to see if they can find the primary. I am scheduled for another Endoscopic Ultrasound in a week to see if primary might be in small intestine. In meanwhile, I am hoping the tumor in my liver doesn't spread somewhere else...as I wait, wait, wait......(I know patience is a virtue, and neuroendocrine tumors are slow growing...but I've been hospitalized 3 times since February.) I want this tumor out now! What if the liver is the primary? It has been documented in the medical literature. While waiting to find this needle in the haystack....it seems that there is an inherint risk that I may wait past the time that anything can be done...

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  5. 5
    • susie54
    • Experience with Neuroendocrine Carcino...
    over 4 years ago
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    monthly octreotide LAR-20

    Procedure or Surgery

    I was nervous about getting the big needle as opposed to the daily injections I got used to doing. But hardly hurt and so far so good. I'm praying that this drug has been keeping tumor from growing further while I waited for tests. I'll know on the 18th when I have my last CT scan. Highly recommend the Novartis web site for info on NETs.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  6. 6
    • susie54
    • Experience with Neuroendocrine Carcino...
    over 4 years ago
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    Other

    Decision Point

    I had my preop testing and another CT scan on the 18th of June. Surgeon said the tumor grew, but I don't know what size it is. He couldn't say. Surgery is scheduled tomorrow morning. I'm severely anxious, but I know that surgery is my best option for survival...so I'm hoping that all goes well.

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  7. 7
    • susie54
    • Experience with Neuroendocrine Carcino...
    over 4 years ago
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    Surgery

    Procedure or Surgery

    Had liver resection on 6/22/2012 to remove neuroendocrine tumor. Glad to be alive but still don't know why such large section of liver was removed. Feeling tired but realize unlike my family that the battle is not over. Primary tumor still not located. Most docs believe neuroendocrine tumor of liver is so rare that the primary is still out there. Very unsettling and difficult to just go about my life. I'm very frustrated (grateful...but frustrated). I know that educating myself is one of the most important things I can do. I want to get PET/w gallium 68.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  8. 8
    • susie54
    • Experience with Neuroendocrine Carcino...
    over 3 years ago
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    Clinical Trial

    Gallium 68 pet scan at Vanderbilt in Nashville to try and find primary for neuroendocrine tumor of liver. Dr. Liu was interested and passionate about this cancer and I would highly recommend him. Unfortunately, the primary was not found. Some doctors believe that it is possible that liver is actually the primary, but this possibility is extremely rare.

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  9. 9
    • susie54
    • Experience with Neuroendocrine Carcino...
    over 2 years ago
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    Symptoms

    It's been 2 years since liver resection and although my scans are negative, my symptoms have progressed. Severe epigastric pain is back. Taking 40 mg protonix and that is still not always effective. My seratonin levels are elevated again. I have episodic chest pain and my oncologist nor my primary care doctor take me seriously. So typical for those diagnosed with neuroendocrine cancer. It is a struggle to be treated and a struggle to feel well. I am tired of the lack of competency of doctors who don't have a clue about this disease.

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  10. 10
    • susie54
    • Experience with Neuroendocrine Carcino...
    almost 2 years ago
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    Procedure or Surgery

    Went to Wren Laboratorities in Branford Connecticut to get the Netest blood test done. Very positive experience. Test results will be back in 2 to 3 weeks. I am looking forward to having more information. I remain open about this.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
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