Carcinoma of unknown primary

2kids1dog · Regular Joined: 08 Aug 2007 Posts: 21

Hello everyone. Wondering if anyone else has been diagnosed as unknown primary? I went in for what I thought was a kidney stone and they found a mass on my right lung. Turns out that I have a mass on each lobe of the right lung as well as enlarged mediastinal lymph nodes. Basically they say it is in the full right side of chest including ribs by the PET scan. I had a bronchoscopy which was negative and fluid drawn off the right lung which was negative also. Then had a mediastinoscopy which came back with sarcomatoid carcinoma. MD Anderson reviewed and placed me in the Carcinoma of unknown primary. It did not start in the lungs by the tests that have been run. I have now had 3 rounds of chemo and will go in for my first scan since starting next week. Just curious if anyone has any info.
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I Will Win!!
Diagnosed-8/15/07
1st Chemo-8/20/07

Conquered-

Daemon · New User Joined: 22 Nov 2007 Posts: 2

Hi..

My mother in law was recently diagnosed with neuroendocrine carcinoma with unknown primary. Altho we still waiting from a biopsy from outside wall of vagina where they saw something docs said that if they find the primary there it will be about the 3th case in all world.. they doubt it.. She is in hospital since June doing exams and test and they cant find anything.. Next week they gonna send her home with nothing to do, only Sandostatin LAR injections every month and hope.. Told us that they couldnt do anything for her.. Soon as we are out we gonna try a PET-CT (this hospital doesnt have it.. only one or two hosp do this test), maybe this will show something.. other than that i dont know what else is to do.. CT,MRI,US,Octreoscan,Cams.. done them all..

tsmom · New User Joined: 07 Jan 2008 Posts: 5

Hello All,
My son was diagnosed with Adenocarcinoma with Unknown origin. Frankly, they tell me that it doesn't matter its origin. He has one nodule on a lung, several lesions on the liver and tumors on the lining that covers his organs. All this with no symptoms of any problems. By the time, he told me that his stomach was bothering him and that he found he couldn't eat as much as he was used to.....we took him to get checked out and this is what they said. We too have been through our third chemo treatment which ended this past Saturday and on Jan 14th a new CAT scan will be matched to Nov 11th to see if there has been any change. Have they given any idea of time? They told us that my son has only weeks or months. The Drs have been wonderful and found no cases mentioned in any medical journal anywhere to compare and get suggestions for chemo drugs. We are doing Taxol, Cisplatin and Avastin for now along with many oral medicines for pain and nausea. If you have anything you can add, please respond. By the way, my son did have his abdomen drained twice because they stated that the tumor secreet fluid.
Rita

Kippi · New User Joined: 24 Nov 2006 Posts: 2

Hello, my son also was diagnosed with Neuroendocrine Carcinoma w/unknown primary, at 25 yrs. of age.

Sadly, after 17 months of treatment, he died from it this past Feb.2007.

My advise? Try anything!!! Go above the usual treatments, research it, and get your son to a specialist!! Check facilities out of the Country as well, Germany for one. Hurry!!! If you can, keep me up on things, I pray your son has a better outcome then mine did. Kippi Morton
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Kippi Morton

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