nueroendocrine carcinoid tumor

aahkansas
aahkansas Member Posts: 11
edited June 2012 in Rare and Other Cancers #1
My boyfriend was diagnosed today with carcinoid tumor, it was removed on May 11 2012. Dr said it was very well self encapulated. (he said that was good). It was removed from under his right lung they said it was not attached to any other organs. Does anyone else have any info on this type of tumor? Dr said our next step is to see a oncologist. and said we were welcome to get a second opinion. So we have chosen Mayo in MN. Just waiting on a appoinment. We are so scared.... anyone with any info please reply. Thank you.

Comments

  • aahkansas
    aahkansas Member Posts: 11
    #2
    updated info
    I just got some new information - my boyfriends correct type of cancer is atypical neuroendrcrine carcinoma. We're waiting on our first appt with oncoloist on Tuesday May 29th. Does anyone have any advice on what we should ask or anything that can prepare us? I thank you all in advance. ok onocolist said he wants to treat with chemo and radiation and wants to use the drugs Cistplatin and Etoposide anyone familiar with these? I'm not comfortable with his suggested treatment anyone out there that could give some more information. This is a small home town cancer center and he said he seen only a few cases and the nurse said she never heard of it before. This makes me feel really uneasy,
  • mr steve
    mr steve Member Posts: 285
    #3
    aahkansas said:

    updated info
    I just got some new information - my boyfriends correct type of cancer is atypical neuroendrcrine carcinoma. We're waiting on our first appt with oncoloist on Tuesday May 29th. Does anyone have any advice on what we should ask or anything that can prepare us? I thank you all in advance. ok onocolist said he wants to treat with chemo and radiation and wants to use the drugs Cistplatin and Etoposide anyone familiar with these? I'm not comfortable with his suggested treatment anyone out there that could give some more information. This is a small home town cancer center and he said he seen only a few cases and the nurse said she never heard of it before. This makes me feel really uneasy,

    aah
    Get a second opinion. You might need to go to a cancer center that has handled several cases of NET. We drove 3 hours one way for treatment.
  • aahkansas
    aahkansas Member Posts: 11
    #4
    mr steve said:

    aah
    Get a second opinion. You might need to go to a cancer center that has handled several cases of NET. We drove 3 hours one way for treatment.

    mr steve
    we are awaiting a 2nd opinion from a ku med oncoloisgt and also awaiting on mayo clinic. I just want to know if there is a correct treatment. Ive read several places that chemo and radiation does not work on NET. If this is so why are they saying that this is what he needs? I just dont understand. He says hes ready for the treatment, but is it gonna be the wrong one or more harmful to him? I just can't stand the thought of him getting the wrong treatment. Thanks for your reply will update on wed evening to sell what ku says. I pray for the right doctor and his anwers.
  • aahkansas
    aahkansas Member Posts: 11
    #5
    mr steve said:

    aah
    Get a second opinion. You might need to go to a cancer center that has handled several cases of NET. We drove 3 hours one way for treatment.

    mr steve
    we are awaiting a 2nd opinion from a ku med oncoloisgt and also awaiting on mayo clinic. I just want to know if there is a correct treatment. Ive read several places that chemo and radiation does not work on NET. If this is so why are they saying that this is what he needs? I just dont understand. He says hes ready for the treatment, but is it gonna be the wrong one or more harmful to him? I just can't stand the thought of him getting the wrong treatment. Thanks for your reply will update on wed evening to sell what ku says. I pray for the right doctor and his anwers.
  • mr steve
    mr steve Member Posts: 285
    #6
    aahkansas said:

    mr steve
    we are awaiting a 2nd opinion from a ku med oncoloisgt and also awaiting on mayo clinic. I just want to know if there is a correct treatment. Ive read several places that chemo and radiation does not work on NET. If this is so why are they saying that this is what he needs? I just dont understand. He says hes ready for the treatment, but is it gonna be the wrong one or more harmful to him? I just can't stand the thought of him getting the wrong treatment. Thanks for your reply will update on wed evening to sell what ku says. I pray for the right doctor and his anwers.

    that's what we heard too
    That's why I suggested 2 opin. Rhonda had surgery which helped for awhile. Her chemos where oral, first it was Temador and xoleda, we had a remisson for awhile. Every cancer is diffrent. So don't get too scared until you know what your fighting. That's easy to say but hard to do. There are a few other chemo drugs just for NET. Make sure you find Onc that has treated several people with this type of cancer. My prayers are with you! OSU in Ohio is where we went for treatment. I would go there again.
    Steve
  • patti1959
    patti1959 Member Posts: 2
    #7
    aahkansas said:

    mr steve
    we are awaiting a 2nd opinion from a ku med oncoloisgt and also awaiting on mayo clinic. I just want to know if there is a correct treatment. Ive read several places that chemo and radiation does not work on NET. If this is so why are they saying that this is what he needs? I just dont understand. He says hes ready for the treatment, but is it gonna be the wrong one or more harmful to him? I just can't stand the thought of him getting the wrong treatment. Thanks for your reply will update on wed evening to sell what ku says. I pray for the right doctor and his anwers.

    My sister is almost done
    My sister is almost done doing the same two chemos and radiation. Hers was a little different in that it was poorly differentiated. Meaning they could not do surgery. The chemo and radiation have helped her tremendously and were not as hard on her as we thought. She had the tumor of origination and 7 other smaller ones. The smaller ones are not visible on a cat scan anymore. The poorly differentiated tumors are more responsive to those types of chemo, but much more aggressive. The most they say you can do is 8 and they certainly won't cure her. The plan is to keep going until they can come up with a cure.
  • AnneLene
    AnneLene Member Posts: 27
    #8
    aahkansas said:

    updated info
    I just got some new information - my boyfriends correct type of cancer is atypical neuroendrcrine carcinoma. We're waiting on our first appt with oncoloist on Tuesday May 29th. Does anyone have any advice on what we should ask or anything that can prepare us? I thank you all in advance. ok onocolist said he wants to treat with chemo and radiation and wants to use the drugs Cistplatin and Etoposide anyone familiar with these? I'm not comfortable with his suggested treatment anyone out there that could give some more information. This is a small home town cancer center and he said he seen only a few cases and the nurse said she never heard of it before. This makes me feel really uneasy,

    Cistplatin and Etoposide
    I gess you already start treatment but anyhow Cistplatin and Etoposide work very good on atypical neuroendrcrine carcinoma and is a first line treatment. I also think I have read something about that chemo is not always work for neuroendrcrine carcinoma, but I think that is the slow types of them and not the atypical.

    I was diagnosed with neuroendrcrine carcinoma (atypical, small cell/poorly differented) the 4. of June this year and is treated with Cistplatin and Etoposide. The chemo look like it work fine for me and later in July we shall have a new CT to get a verification of the treatment so fare. I am treated in Oslo (Norway) and is Norwegian, but still same treatment.

    I hope everything work out fine for you ;-)

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