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Atypical Carcinoid Tumor

JR101
Posts: 2
Joined: Jan 2010

My husband had a large Tumor removed from his right lung. The doctor removed the center lobe and part of the lower lobe. After all testing was complete they determined it had not spread to lymph nodes. It was an atypical carcinoid tumor and he was told chemo was advised but there was no data to support the chemo would have any impact on this type of cancer. He was feeling better after the surgery but developed a hiatal hernia and now has problems eating without feeling pain in the center of his chest above the stomach.

Has anyone had any experience with kind of tumor?

beachinmom's picture
beachinmom
Posts: 76
Joined: May 2008

I researced this place when i thought i had a neuroendocrine tumor---they are very specialized and handle carcinoid and neuroendocrine tumors.

http://www.ochsner.org/programs/neuroendocrine_tumor_program/

I was just passing thru this board looking for info for a friend. I am normally on the colon cancer board...good luck to you.

unwindn2@aol.com
Posts: 2
Joined: Feb 2010

I have a large carcinoid (atypical) in the hilar or upper left lobe of my left lung. I have opinions from UT Cancer Specialist and Huntsman Cancer Institute and both said carcinoid cancer isn't treatable with chemo. I am scheduled for surgery 2/26. The surgeon is hopping to take just the lobe but isn't to optimistic. Any information you have re:recovery I would apprciate. The drs did say I may need radiation later as it is in the mediastinum. I would get other opinions before I submitted to chemo.

aahkansas
Posts: 11
Joined: May 2012

dont know if you still come back, for support, but what ever happened with the treatment? We just had a familiar diagnosis atypical carcinoma. removed from under his right lung. surgeon was sure he got it all, now , today was our first oncolgist visit and he wants to do chemo and radiation. Got any helpful info on this type of treatment?

aahkansas
Posts: 11
Joined: May 2012

What kind of treatment are you getting? My BF has only had radiation and Zometa . Took out a lemon sized tumor under his right lung. but has mestasized to his spine. Hasnt had any radiation since JUly 2012 and Zometa treatments for bone strenghthing every 3 mmonths. Any news on what your doing would be helpful

TriciaB13's picture
TriciaB13
Posts: 7
Joined: Jan 2013

Hi Everyone,

Im new to the network....Im 27 and an 8 month survivor. I was diagnosed as asthmatic years ago and then in March 2012 thought i was have the mother of all attacks and ended up being admitted to the hospital. HAd a CT scan when the docs couldnt figure out why i wasnt improving. Scan showed a 6mm mass in my right mainstem bronchus and a nodule in my right lower lobe. The doctors here told me that chemo and radiation had no effect but that the cancer was rare and they hadnt seen many cases so they recommended chem, radiation and removal of my right lung. SCARY!!! At 27 and I was getting married in 2 months  i sought a second opinion. Went to the MAyo Clinic in MN and the doctors there are at  the forefront. I was able to get married in MAy 2012 and 2 weeks after my wedding had a total open right thoracotomy. They removed the mass from by bronchus and were able to save my lung! At my 6 month check up @ mayo still cancer free....the nodule in the right lower lobe hasnt grown or changed so they are watching it for now. I have pain everyday and am in my second round of physical therapy, but knowing that post thoracotomy pain syndrome is chronic....I can deal with it form day to day if it means I stay cancer free.

dennycee
Posts: 658
Joined: Mar 2011

You RAWK.  Your story is a great example of the success one can have when advocating for themself and pursuing that second opinion.  thank you for introducing yourself.  

TriciaB13's picture
TriciaB13
Posts: 7
Joined: Jan 2013

Thanks for the positive words!

TriciaB13's picture
TriciaB13
Posts: 7
Joined: Jan 2013

Thanks for the positive words!

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