Neuroendocrine Carcinoma - Help!

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derMaus
derMaus Member Posts: 558 Member
edited December 2016 in Uterine/Endometrial Cancer #1

Hello,

I had my post-op today and it wasn't pretty, but could have been worse. My cancer is mixed: 60% 'garden variety' endometrial cancer, and 40% neuroendocrine. The later is super worrisome. Per the onc, "we really don't know much about what works with this because we see it so infrequently. We treat it with cisplatin and etoposide or the 'normal' regimen for endometrial cancer". Please, please....does anyone have any experience with this??

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  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,398 Member
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    derMaus, I am sorry to hear

    derMaus, I am sorry to hear this.  I had to google 'neuroendocrine' to see what it was.  For everyone else, here is what I found:

    Neuroendocrine cells are part of the diffuse neuroendocrine system. This system is a network of neuroendocrine cells throughout the body. Neuroendocrine cells are also in the endocrine system, which includes the pituitary, pineal, thyroid, parathyroid and adrenal glands, pancreatic islet cells (also known as islets of Langerhans) and the ovaries or testicles. Neuroendocrine cells have a structure similar to nerve cells, or neurons. They also make hormones like endocrine cells. They receive messages from the nervous system and make hormones in response to these messages. Neuroendocrine cells are present in different parts of the body, but they are mainly found in the digestive system and respiratory system.

    So, with that said, under "Treatment" I read:  Recent studies have found that a combination of doxorubicin (Adriamycin), fluorouracil (Adrucil, 5-FU), and streptozocin (Zanosar) can reduce the symptoms of a tumor and side effects of its treatment for some patients.  ((Not sure how "recent" the studies are))

    Neuroendocrine sounds like it is more with your endocrine system and it just so happened to land where it did.  You might want to get a second opinion from a doctor who specializes in treating this type of cancer.  I'm sorry, maybe you did see that kind of doctor on your follow up, but I would suggest digging in a little more - but don't look at STATISTICS!  YOU are a statistic of ONE.  

    Hugs my dear!

     

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
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    Neuroendocrine carcinoma

    DerMaus,

    I too, like No Time ForCancer, had to look this up.
    The first thing is that the endocrine system is tied to releasing hormones, so this appears to be related to
    hormonal abnormalities like low blood sugar or heart problems.  I always say, you have to look at the
    source of the cancer, the underlyiing health issues.

    Personally, I would ask my doctor to do a full blood panel for all hormones, like estrogen(estradiol), estrone,
    progesterone plus IGF-1, serum insulin, glucose, CRP, cholesterol.  What underlying health conditions do you have?  Diabetes?
    Insulin resistance, heart issues, high cholesterol?  Where do you have a tumor exactly? Hormones are a major driver of many
    cancers- we usually have too much of a specific hormone or some other bodily fluid (eg. glucose, cholesterol).

    Where is your tumor located? Based on where the tumor is located, that organ might give you an idea of what is not functioning properly.
    Oncologists don't address the underlying health conditions that cause our cancer.  There is always a cause.
    If you can figure out the cause, you can probably stop the cancer from growing. That is my opinion and my personal
    experience.

    As you notice, they just want to give you the standard treatment for treating the tumor, not what caused the tumor.
    Unfortunately, we have to do our own research if we want to survive.  It was estimated I had 4-6 months to live
    back in Jan 2015- the doctors really don't treat you- they treat the tumor, which has nothing to do in stopping cancer
    from returning. Once I treated my underlying health conditions, my tumors all vanished, to the shock of the doctors.

    Takingcontrol58

     

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited December 2016 #4
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    2nd opinion help

    Since this is component of your cancer, I agree with NoTime that you want someone on your team who knows more about it than your oncologist. He'd probably welcome some expertise regarding the neuroendocrine cancer. Here's a site that might be helpful for finding someone like that in your area:

    http://www.carcinoid.org/for-patients/treatment/find-a-doctor/

    Hope this helps!

  • derMaus
    derMaus Member Posts: 558 Member
    edited December 2016 #5
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    Neuroendocrine carcinoma

    DerMaus,

    I too, like No Time ForCancer, had to look this up.
    The first thing is that the endocrine system is tied to releasing hormones, so this appears to be related to
    hormonal abnormalities like low blood sugar or heart problems.  I always say, you have to look at the
    source of the cancer, the underlyiing health issues.

    Personally, I would ask my doctor to do a full blood panel for all hormones, like estrogen(estradiol), estrone,
    progesterone plus IGF-1, serum insulin, glucose, CRP, cholesterol.  What underlying health conditions do you have?  Diabetes?
    Insulin resistance, heart issues, high cholesterol?  Where do you have a tumor exactly? Hormones are a major driver of many
    cancers- we usually have too much of a specific hormone or some other bodily fluid (eg. glucose, cholesterol).

    Where is your tumor located? Based on where the tumor is located, that organ might give you an idea of what is not functioning properly.
    Oncologists don't address the underlying health conditions that cause our cancer.  There is always a cause.
    If you can figure out the cause, you can probably stop the cancer from growing. That is my opinion and my personal
    experience.

    As you notice, they just want to give you the standard treatment for treating the tumor, not what caused the tumor.
    Unfortunately, we have to do our own research if we want to survive.  It was estimated I had 4-6 months to live
    back in Jan 2015- the doctors really don't treat you- they treat the tumor, which has nothing to do in stopping cancer
    from returning. Once I treated my underlying health conditions, my tumors all vanished, to the shock of the doctors.

    Takingcontrol58

     

    Location, location...

    Thank you all for the great answers. The tumor was located in my uterine lining and had crept down to (or upward from?) my cervix. No other organs affected yet, or that showed on a scan at least. My labs before my surgery last week were normal, for me: somewhat elevated blood sugar (110, I believe), slightly high cholsterol, everything else normal except that my TSH has been falling, now that you mention it. I've been on thyroid meds for about 5-6 years now and my TSH has been lowering steadily - which is generally good - but the pre-surgery it was down to 0.69. Hmmm....I'm definitely followingup on that, stat. I love this Board - you have much better information than my oncologist. Love to you all.

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
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    derMaus said:

    Location, location...

    Thank you all for the great answers. The tumor was located in my uterine lining and had crept down to (or upward from?) my cervix. No other organs affected yet, or that showed on a scan at least. My labs before my surgery last week were normal, for me: somewhat elevated blood sugar (110, I believe), slightly high cholsterol, everything else normal except that my TSH has been falling, now that you mention it. I've been on thyroid meds for about 5-6 years now and my TSH has been lowering steadily - which is generally good - but the pre-surgery it was down to 0.69. Hmmm....I'm definitely followingup on that, stat. I love this Board - you have much better information than my oncologist. Love to you all.

    Location, location

    Since your blood sugar is slightly elevated, you might want to ask about metformin.  Mine was no higher than yours-
    but that number is considered pre-diabetic.  Also, our thyroid controls metabolism. As you can see, this is all connected,
    so maybe your thyroid does have something to do with this.

    You might want to investigate further at the website of the National Institutes of Health- http://www.pubmed.gov.
    Lots of good information. I would read about the thyroid angle and endometrial cancer.

    Also, high blood sugar, low HDL, high blood pressure, fat around the waist and high
    triglycerides make up metabolic syndrome. If you have 3 out of these, you have metabolic syndrome
    which increases your risk of EC by 2-3 fold.

    Takingcontrol58

     

  • derMaus
    derMaus Member Posts: 558 Member
    Options

    Location, location

    Since your blood sugar is slightly elevated, you might want to ask about metformin.  Mine was no higher than yours-
    but that number is considered pre-diabetic.  Also, our thyroid controls metabolism. As you can see, this is all connected,
    so maybe your thyroid does have something to do with this.

    You might want to investigate further at the website of the National Institutes of Health- http://www.pubmed.gov.
    Lots of good information. I would read about the thyroid angle and endometrial cancer.

    Also, high blood sugar, low HDL, high blood pressure, fat around the waist and high
    triglycerides make up metabolic syndrome. If you have 3 out of these, you have metabolic syndrome
    which increases your risk of EC by 2-3 fold.

    Takingcontrol58

     

    Metformin

    Thank you for the reminnder about Metformin. Based on what I'd seen here, I did ask my onc about it yesterday. She was vague and not particularly interested in exploring the topic, which seemed odd as I understand it to be a relatively 'harmless' medication. I certainly don't want to start throwing everything at the wall and hoping it sticks, but that one seemed pretty standard from my reading. I'm going to re-pursue (is that a word?)