Neuroendocrine EC

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anthropos
anthropos Member Posts: 1
in Esophageal Cancer #1

Hello Everyone,

 

I am new to this board. Just found this site as I have been on another for several months.

 

I am 8 months post-surgery for a neuroendocrine tumor that was found in my lower esophagus near the junction with the stomach.  I was diagnosed on April 25, 2013 and

was told that I needed surgery as soon as  possible. No one ever mentioned the stage, although the tumor was about 5 cm. On may 20th I had the Ivor-Lewis procedure.

The surgeon took 1/3 of the esophagus and the top of the stomach. No metastases were found and the lymph nodes were clear.

 

After surgery my oncologist told me that neither chemo nor radiation were needed and that the neuroendocrine tumors did not respond all that well to chemo. He said that I

didn't know how luck I am. After reading the posts on EC I feel very fortunate.

 

I have had on CT scan since surgery which was clear. I am scheduled for another next month.

 

I am still looking for all the information I can find about Neuroendocrine EC but it is very rare. From what I have found so far there really is no set protocol.

 

I would appreciate any information that may be out there.  I know that there is always a chance it may return.

 

 

Comments

  • mardigras
    mardigras Member Posts: 215 Member
    #2
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    Hello

    Hello,

    My husband had almost the same diagnosis and treatment as you, three years ago this month.

    The consultant also said that chemo and radiotheraphy were not needed as they had taken all

    surrounding nodes (22 in all) and there was no evidence of metastases.  They did not mention

    Neuroendocrine and I have not heard of it, but Rob does not have many problems at all now. He 

    will always be on the thin side as the altered geography of his body does not allow him to gain

     

     

    weight easily. He suffers from the occassional bouts of dumping syndrome, but other than that

     

     

    he keeps well and leads a normal life.

     

     

    I think the fact that treatment is free in the UK means that the 'belt and braces' approach of the USA

     

     

    where additional chemo and radiotheraphy is paid for by the insurance companies means that no

     

     

    sources of additional income (ie stones are left unturned). Or perhaps I am just a cynic. 

     

     

    I hope you keep well and stay cancer free.

     

     

    Kind regards,

     

     

    Marci

     

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