One patient with glioblastoma still alive nine years later
by BeckyN on Thu Dec 06, 2012 10:20 PM
Hello, looking for advice. My 17 yr old daughter started having severe right lower ab pain in September. Surgery was done to remove ovarian cyst. 3 wks later severe pain reoccurred and exploratory surgery was done. Appendix was removed and although it looked healthy the pathology report came back showing an 8mm carcinoid. We were told since it was removed it wouldn't be a problem and that her lymph nodes were swollen. She was diagnosed with mesentary adenitis(virus in nodes) 10 days later she was admitted to hospital with severe pain, Dr said it was still the mesentary adenitis and the carcinoid wasn't related to the swollen nodes. A week later we went back to surgeon again with acute pain, when he referred us to pediatric gi. it's been a month now, he wouldn't do colonoscopy for 6 wks after last surgery (Dec 10) Her pain is always at a 5-6 on the pain scale with acute pain attacks several times a day. She gets horrible headaches after the attacks and is constantly nauseated and fatigued. She was told to try to resume normal activity and has tried going to basketball practice. However, when the activity increases the attacks come. Her face flushes deep red as these attacks start and will last for several minutes to 1/2 hour. Normally the attacks would last 5 minutes, however the last 2 weeks they will last as long as 1 1/2 hours. She is completely taken to the ground in severe pain. the pediatric gi is suspecting more carcinoids. We have had 2 CTs since September, and an upper GI, which we are awaiting results for. Other symptoms she has which we question could be related are increase in facial hair, weight gain, bright blood from rectum, and insominia. Her stools were black and tarry after taking the narcotics so we assumed it was from them.
We questioned whether the swollen nodes were related to the carcinoid but he was definate that they were not related. After doing research, carcinoids seem to be hard to diagnose and was wandering if anyone else has had small carcinoids that have mestatized from the appendix. or maybe that the primary carcinoid is somewhere else. I feel that we should demand a biopsy of the mesentary lymph nodes, but will that show carcinoids.
Advice would be greatly appreciated.
by Slacker780 on Thu Dec 13, 2012 02:19 AM
by beingcelestial on Fri Dec 14, 2012 02:37 AM
First of all, there are a few other sites that will give you more information and support. Go to the Carcinoid Cancer Foundation'swww.carcinoid.org. Another very informative site isCARCINOID@LISTSERV.ACOR.ORGand it has a NETs specialist available to answer your e-mail questions. His name is Dr. Woltering. You can call him as well. Also, there is a private/closed facbook page called the Zebra Zone with many loving survivors there for you and your daughter.
Your daughter is presenting classic carcinoid symptoms. Some scans that she should be receiving include an octreoscan, abdominal MRI, Tri-phase CT of abdomen and pelvis. Blood work should include a Ki67 proliferation test of the specimen, CgA, gastrin, serotonin, norepinephrine and other adrenal tests. You daughter might as well get a neck ultrasound unless she had a CT scan that would detail the thyroid.
Please continue the pursuit of finding the primary. There could be more than one primary, especially if there was a carcinoid on her appendix. Make sure she receives an endoscopy along with her colonoscopy and go to someone that specializes in NETs/GI cancer.
I had papilary thyroid cancer and a total thyroidectomy in March, 2012. Then I received radioactive iodine treatment (one pill) and went back for a whole body scan in May. Something lit up in my abdomen which could have been residual RAI. I had to get a colonscopy and politely demanded an endoscopy too just to be safe...sure enough they found a 2 mm carcinoid in my duodenal bulb. I have been educating myself and others since my experience. Hopefully it is a one time thing that was caught early. I do not have symptoms of carcinoid.
You and your daughter are your own best advocates. Keep looking and seek other opinions from other doctors as not many are well-versed in NETs.
Keep in touch! You and she are in my prayers!
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