Carcinoid Cancer

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Adair555
Adair555 Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
I have recently been diagnosed with carcinoid cancer of the ovary. It was found unexpectedly while having a hysterectomy. It was totally removed and 32 biopsies were neggative. I feel fine and have no symptoms of anything wrong so I don't know what to expect of the scans. Had two scans this week, octreotide scan and CT scan. Presently awaiting results. Has anyone else had this? I'm a nurse and have never heard of it. My onocolgist says it is a much better prognosis than if it was a typical ovarian cancer, but at the same time he says I don't want to hear my name in the same sentence with the word cancer. So...I would like to be able to relate to someone else who is dealing with this. Thanks!

Comments

  • marcel
    marcel Member Posts: 3
    #2
    carcinoid cancer
    My husband has carcinoid cancer of the throat which is very rare. Here is a place that can give you infomation. They are a research center that can point you in the right direction:
    Carcinoid Cancer Foundation
    333 Mamaroneck Ave #492
    White Plains NY 10605
    Phone 888-722-3132
    email: mewarner@carcinoid.org
    web site: www.carcinoid.org

    The doctors on this site are work with the research center in NY.
    Good Luck
  • mr steve
    mr steve CSN Member Posts: 285
    #3
    scans
    Adair,

    What were the results of your scans?

    Steve
  • Cyndel
    Cyndel Member Posts: 3
    #4
    Carcinoid Cancer
    Hi Adair,
    My name is Cynthia and I was diagnosed with carcinoid cancer with mets to the liver in Oct 09. The CT scan Abd/Pel saw a mass, lemon size in the mesentery. The Octreo Scan showed about 9 tumors in liver. So as of today.....I'm using octreotide for the symptoms and am having surgery 1/21/10 to remove most of the tumors from liver,the one in the mesentery, the gallbladder and to look for the primary in the small bowel. They say if you have to have cancer, this is the one to have cause it's slow growing. It seems they did the correct test on you. What were your results?
  • mr steve
    mr steve CSN Member Posts: 285
    #5
    Cyndel said:

    Carcinoid Cancer
    Hi Adair,
    My name is Cynthia and I was diagnosed with carcinoid cancer with mets to the liver in Oct 09. The CT scan Abd/Pel saw a mass, lemon size in the mesentery. The Octreo Scan showed about 9 tumors in liver. So as of today.....I'm using octreotide for the symptoms and am having surgery 1/21/10 to remove most of the tumors from liver,the one in the mesentery, the gallbladder and to look for the primary in the small bowel. They say if you have to have cancer, this is the one to have cause it's slow growing. It seems they did the correct test on you. What were your results?

    neuroendocrine ca
    Cyndel,

    My wife is fighting carcinoid/NETS. She had a modified whipple in April. Where are you going for treatment?

    Steve
  • sdusenbe
    sdusenbe Member Posts: 2
    #6
    Carcinoid Survivor
    When I was diagnosed 20 years ago (age 22) with carcinoid, it was very difficult to find doctors that were aware of it and how the best to treat it. I was also told that it was very slow growning and only had a soft ball size mass in my left lung. Surgery was performed and all was good for 12 months, then during a routine appointment it was discovered it was in my liver, from there I had it move to my stomach, thyroid and a regrowth in my left lung. I've went through many surgeries and chemo. 20 years later I'm fairly healthy with the minimal issues related to having so many surgeries. This can be beat, I would strongly suggest going to a major hospital that specialies in this type of cancer. I wish you well on our journey.
  • Cyndel
    Cyndel Member Posts: 3
    #7
    mr steve said:

    neuroendocrine ca
    Cyndel,

    My wife is fighting carcinoid/NETS. She had a modified whipple in April. Where are you going for treatment?

    Steve

    .
    Hi Mr Steve,
    I had my surgery 2/8/10 at Mount Sinai in NYC. They have a big carcinoid section that does research and treatment. I had a lot of my liver removed but all the tumors are gone!!! They were able to remove the one in the mesentery! They found my primary in the duodenum. Now on the road to recovery! Who does your wife see? I am thrilled with my gastro doc and My surgeon is awesome!
  • mr steve
    mr steve CSN Member Posts: 285
    #8
    Cyndel said:

    .
    Hi Mr Steve,
    I had my surgery 2/8/10 at Mount Sinai in NYC. They have a big carcinoid section that does research and treatment. I had a lot of my liver removed but all the tumors are gone!!! They were able to remove the one in the mesentery! They found my primary in the duodenum. Now on the road to recovery! Who does your wife see? I am thrilled with my gastro doc and My surgeon is awesome!

    Cyndel
    Were at the James at OSU. We too are quite happy with our Onc team. My wife is on oral chemo and the last scan showed the tumors shrinking (first really good news we had in a while)Hers started in the prancreas and move to the liver, ovaries, and lymph nodes. If they respond to the chemo enough then we have another surgey.
  • lavonnad
    lavonnad Member Posts: 1
    #9
    Cyndel said:

    .
    Hi Mr Steve,
    I had my surgery 2/8/10 at Mount Sinai in NYC. They have a big carcinoid section that does research and treatment. I had a lot of my liver removed but all the tumors are gone!!! They were able to remove the one in the mesentery! They found my primary in the duodenum. Now on the road to recovery! Who does your wife see? I am thrilled with my gastro doc and My surgeon is awesome!

    Hi Cyndel,
    After my second surgery for carcinoid tumors it was discovered the major tumor is on the masenteric artery. The surgeon said it was too risky to remove the tumor from the artery. If you don't mind me asking was yours also on or close to the artery? I have not seen my oncologist yet after the recent surgery, but have a bunch of questions for him. I'm also planning on going to Mayo Clinic for evaluation with my carcinoids. Any input on that decision is welcome. Even though this cancer is slow growing it just took two short years for two new tumors to form.
  • AmyShan
    AmyShan Member Posts: 2
    #10
    sdusenbe said:

    Carcinoid Survivor
    When I was diagnosed 20 years ago (age 22) with carcinoid, it was very difficult to find doctors that were aware of it and how the best to treat it. I was also told that it was very slow growning and only had a soft ball size mass in my left lung. Surgery was performed and all was good for 12 months, then during a routine appointment it was discovered it was in my liver, from there I had it move to my stomach, thyroid and a regrowth in my left lung. I've went through many surgeries and chemo. 20 years later I'm fairly healthy with the minimal issues related to having so many surgeries. This can be beat, I would strongly suggest going to a major hospital that specialies in this type of cancer. I wish you well on our journey.

    Carcinoid cancer
    Hi sdusenbe,
    I was diagnosed in March 2010 with a neuroendocrine carcinoid lung tumor. It is in-operable and from what I have been told chemo and radiation have little effect on these types of tumors. I have been staged at a 3b. I was reading your story and I am curious if your carcinoid tumor was derived from neuroendocrine cells as well. Thank you!
  • burleigh72
    burleigh72 Member Posts: 1
    #11
    ovarian carcinoid
    I was diagnosed in 2000, the doctor felt what she thought was a fibroid on my uterus during a routine exam. After ultrasound I was scheduled for surgery, it was grapefruit size and "well contained". I was just released from oncology follow up, only a few minor scares that turned out to be fairly benign. Despite being told how lucky I was that it was this type, I didn't feel so lucky! Everything has worked out for the best, I hope you are doing well. It is extremely rare for carcinoid to be ovarian. Good Luck! Feel free to email if you need to chat.
  • cshepp1
    cshepp1 Member Posts: 2
    edited April 2017 #12
    Cyndel said:

    Carcinoid Cancer
    Hi Adair,
    My name is Cynthia and I was diagnosed with carcinoid cancer with mets to the liver in Oct 09. The CT scan Abd/Pel saw a mass, lemon size in the mesentery. The Octreo Scan showed about 9 tumors in liver. So as of today.....I'm using octreotide for the symptoms and am having surgery 1/21/10 to remove most of the tumors from liver,the one in the mesentery, the gallbladder and to look for the primary in the small bowel. They say if you have to have cancer, this is the one to have cause it's slow growing. It seems they did the correct test on you. What were your results?

    Cynthia

    Hi Cynthia, 

    I'm Cynthia, too. So the CT didn't show the lesions in your liver? I'm being worked up for carcinoid because of a high CgA and high 24-HR 5-HIAA, but CT showed nothing but cysts on my ovaries. I have an octreoscan Mon-Wed of next week. I'm not sure what I'll do if it doesn't glow. I've been dealing with extreme flushing, along with fast,irregular heartbeat, hypoglycemia, blood pressure drops, shaking, etc. It went from once a month to practically every day over the last year. My gastrenologist also isn't a carcinoid specialist. I feel a lot lost. 

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