Help!!! Neuroendocrine cancer of the pancreas

mizcolon
mizcolon Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
Hello all.........

My mother had a biopsy 7/21/09, we where told of the results 3 days later. It was a malignant neuroendocrine tumor of the pancreas the lize of a tennis ball. Well here we are almost 12/1/09 and nothing has been done.

Surgery to remove was scheduled 2 months ago, but my mother has sleep apnea so is awaiting finally testing to have a custom mask to wear during surgery to prevent her from stop brreathing while on the operating table...

She has never been to a oncologist hasnt been referred to one, hasnt had any further testing of anything since sept.

Is this normal, and I missing something?

Help!

Comments

  • mr steve
    mr steve Member Posts: 285
    #2
    Mom
    Miz,

    Go to a hospital that treats this type cancer. We were refered to OSU or M D Anderson by our local Onc. One good thing is this usually a slow growing.

    Steve
  • Jordan NET
    Jordan NET Member Posts: 1
    #3
    Help!!! Neuroendocrine cancer of the pancreas
    I don't know anything about sleep apnea, and suggest you keep in contact with the doctors about moving forwards with what needs to be done about surgery. The doctors sometimes get very busy. Keep after them about this, in a polite way, and ask if there is anything you can do to help. This is a very rare form of cancer, diagnosed to only about 2500-3000 people a year. I was told that surgery was the first option to remove the tumor.

    Last March they found a similar size tumor at the head of my pancreas which was also this rare form of neuroendocrine cancer. My cancer tumor has the detected cancer limited to the tumor itself. And as mentioned in the earlier post, is a slow type of cancer that is often not detected until the tumor has grown and has caused some side effects.

    In April I went into surgery for a “Whipple” procedure (see “Whipple surgery” in other discussion boards) that would remove the tumor. Unfortunately, sometimes the tumor is in a bad location and the tumor can't be removed, which occurred in my situation. I did have some very helpful reconstructive surgery instead of the “Whipple”, plus radiation and chemotherapy after surgery. So far the tumor hasn't grown, and I just take some pills to help digest meals.
  • bkh18
    bkh18 Member Posts: 1
    #4
    Neuroendocrine Cancer
    My wife was diagnosed with this over 2 years ago. We were treated locally but realized that our doctor had limited experience. We are now at Dana-Farber where Dr. Kulke is an expert in this cancer. She has be treated with Chemo (temodar)and also octreotide - and her tumors (pancreas that spread to liver) is now stable again. It is very important that you go to a cancer center and physician that has significant experience with this type of tumors and can discuss many options with you. They are up to date on the research, can debunk the rumors. It is very important that you get the treatments that are right for you. Also, be aware that there are organizations such as caring for carcinoid that can provide support and answers to questions.
  • mr steve
    mr steve Member Posts: 285
    #5
    bkh18 said:

    Neuroendocrine Cancer
    My wife was diagnosed with this over 2 years ago. We were treated locally but realized that our doctor had limited experience. We are now at Dana-Farber where Dr. Kulke is an expert in this cancer. She has be treated with Chemo (temodar)and also octreotide - and her tumors (pancreas that spread to liver) is now stable again. It is very important that you go to a cancer center and physician that has significant experience with this type of tumors and can discuss many options with you. They are up to date on the research, can debunk the rumors. It is very important that you get the treatments that are right for you. Also, be aware that there are organizations such as caring for carcinoid that can provide support and answers to questions.

    2 years
    BKH

    Where is Dana-Farber? Has it spread any more?

    Steve
  • bosco134
    bosco134 Member Posts: 4
    #6
    neuroendocrine cancer of the pancreas
    My husband had a similiar long waiting period and I think that made me crazy the size he was battling was as big as a mini nerf ball and they also said 3 different Dr.s it as the size of a tennis ball but after meeting the right Doctor who really took an interest in his case new it was big and new it had to be removed chemo would not shrink it enough. He was diognosed on Jan 1 2010 the surgery was Feb 19 by the time we could get other opinions and all ness. tests before surgery. He is home now and is still having lots of pain the eating part is horrible and all the pills he has to take before he eats. I can only suggest you get her a few opinions before you start they are not thinking correctly and you need an advocate. The good thing is that it is slow growing I have heard could be up to 8 years it takes to grow if that helps any. Joe had the whipple and tumor removed along with 6 lypmth nodes.
  • bosco134
    bosco134 Member Posts: 4
    #7
    neuroendocrine cancer of the pancreas
    My husband had a similiar long waiting period and I think that made me crazy the size he was battling was as big as a mini nerf ball and they also said 3 different Dr.s it as the size of a tennis ball but after meeting the right Doctor who really took an interest in his case new it was big and new it had to be removed chemo would not shrink it enough. He was diognosed on Jan 1 2010 the surgery was Feb 19 by the time we could get other opinions and all ness. tests before surgery. He is home now and is still having lots of pain the eating part is horrible and all the pills he has to take before he eats. I can only suggest you get her a few opinions before you start they are not thinking correctly and you need an advocate. The good thing is that it is slow growing I have heard could be up to 8 years it takes to grow if that helps any. Joe had the whipple and tumor removed along with 6 lypmth nodes.

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