NET's

eveelynn
eveelynn Member Posts: 2
in Rare and Other Cancers #1

Was diagnosed with neuroendocrine carcinoma, the same kind that is usually found in the lungs, but my tumor was on the vulva which the docs can't figure out why. Surgery removed the tumor, only 1 cm, and now started on chemo for the next 5 months. They are treating me as though I had lung CA due to the type of cells in the tumor. My CT scans were all clean, no other tumors that they can find. Anyone else with this type of not only rare cancer but growing in a rare location? The docs are baffled. Any one else?

Comments

  • Marynb
    Marynb Member Posts: 1,118
    #2
    Eveelynn
    Hi. Yes, I also have neuroendocrine carcinoma. I had a NET in my small intestine and there had been spread to my lymph glands. It is so important that you see a specialist for this cancer. There are some resources available to help you find a specialist. I was told that there was no effective chemo for this cancer. There is a list serve for nets on acor.org. Also, google Caring For Carinoid. Feel free to email me. I am wondering where you were treated? There are several places where there are specialists.
  • Marynb
    Marynb Member Posts: 1,118
    #3
    Disregard
    Double posting
  • eveelynn
    eveelynn Member Posts: 2
    #4
    End of Chemo

    Well as I previously stated, my tumor had been completely removed, but the Gyn/Onc who admittedly said he didn't know anything about neuroendocrine tumors told me that the real treatment would be chemo, not the removal of the tumor which he said was the easy part. Well everything I've read says removal of the tumor is the curing factor in this type of cancer. And the chemo doctor also admitted she knows nothing about NET's said, "We're in uncharted waters" and admitted she was guessing on the chemo treatment she was ordering for me. She said since the tumor they removed usually is found in the lungs that she'd treat me as though I had lung cancer, which I don't, but this is the chemo she chose for me.

    Immediately I was having problems, especially with the steroids. I warned the chemo doc that I'd had one steroid treatment for something else a couple of years ago and it jacked me up, hypertension, raised blood glucose, and other stuff, but she insisted this would be okay. Well it wasn't. Besides the hypertension again and raised blood glucose I was also having swelling everywhere. The doc chose to ignore and instead put me on meds for my blood pressure. BTW, I just love taking meds to counteract other meds they're giving me, NOT!

    Then the other night it happened, after my second round of chemo, when I had the pleasant feeling of hitting the wall, I didn't recover this time. I kept getting worse. More fatigue and now shortness of breath. I had already told the chemo doc about the alarming ringing in my ears, (the chemo I was on could cause deafness), and to that she said, "We'll watch that." Yeah, thanks. But the shortness of breath got really bad, my heart felt like it was beating out of my chest, so I called 911. I ended up in the ICU with multiple large blood clots in both lungs. I spent a week in the hospital and ICU. On the day I was being discharged my chemo doc showed up and told me I could take a week off from chemo to recover from the clots, because as she put it, "we don't want the chemo to kill you." Again, gee thanks. 

    I'm going to get a second opinion next week and I'm refusing any further chemo for lung cancer that I don't have. We'll see what the new cancer center has to say about all this and they're even going to conduct another pathology diagnosis to see if I really need this chemo and treatments. Regardless of what the outcome is with the new doc, I'm not taking any more chemo while I'm well and have no signs of disease.

    Glad to be out of the hospital and away from death's door. :)

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