Neuroendocrine (NETS) / Carcinoid tumors

Support for those diagnosed with neuroendocrine (NETS) / carcinoid tumors.


What should CT cover?

  • By faitleafarms · New reply April 5, 2014
  • 4 replies
  • My wife was diagnosed with a typical carcinoid tumor in the fall of 2012 and underwent a lower left lobe removal that seemed to get it all, margins and no lymph node involvement. She's had a PET scan ...

First Global Carcinoid and Neuroendocrine Tumor Patient Survey

  • By CarcinoidCancerFndn · Posted April 4, 2014
  • 0 replies
  • There is still time to participate in the first ever Global NET Patient Survey! Please help the Carcinoid Cancer Foundation in collaboration with the Caring for Carcinoid Foundation -- both members of ...

long term pain issues after lobectomy

  • By pbedtelyon · New reply March 30, 2014
  • 16 replies
  • Hello fellow lungers. This is my first winter after having my left lower lung removed. We are having very cold weather here in northern Indiana (3 degrees with wind chill factor) and I am experiencing ...

I need more information

  • By juliegill · New reply March 12, 2014
  • 11 replies
  • My mom was recently diagnosed with stage IV neuroendocrine large cell carcinoma of the lungs. She has had a mass removed from her right breast and left side that both showed positive for this. She also ...

frequent upper respiratory infections this winter

  • By pbedtelyon · New reply March 10, 2014
  • 7 replies
  • This is my first winter since my LLL lobectomy for a benign carcinoid tumor in May 2013. I have developed Asthma and have lung scarring in the remainder of my left lung. This winter I have had multiple ...

Pain Medication

  • By Mjmimi · New reply February 23, 2014
  • 11 replies
  • Hi everyone ! This question applies to anyone and everyone who is taking pain meds. You can read my history by clicking on my name. I was unable to have surgery to remove the cancer because it's spread ...

Losing Friends because of Illness?

  • By Johnnygreenwood · New reply February 21, 2014
  • 24 replies
  • I had a very public campaign to help me with my lobectomy surgery a few years ago. Since then I've been completely abandoned by my friends. I went from about a 100 people in my life regularly to zero ...

Anyone have an ATM mutation and if so, what did you do?

  • By Mjmimi · New reply February 21, 2014
  • 9 replies
  • I was dx with Atypical NET of lung in may of 2013. Did 6 rounds of Etoposide/carboplatin and my PET and CT scan done 10 days ago revealed little change since May. A little growth here; a little shrinkage ...

lerge cell Neuroendocrine non small cell

  • By lena-g · New reply February 18, 2014
  • 3 replies
  • Hello to every one my na me is Eleni and i'm from greece my dad diagnonised with large cell neuroedocrine non small cell three month ago.and although is non small,is a rare cancer in aggressive form.I'm ...

Newly Diagnosed Carcinoid Tumor in Lung

  • By jslv · New reply February 16, 2014
  • 8 replies
  • I was diagnosed with a carcinoid tumor in my left lung on 1/31/2014 by the Pulmonologist I've been seeing since 12/20/2013. After a CT scan and a bronchoscopy, he told me I need to have it removed and ...

Husband with Thymic Neuroendocrine

  • By teern · New reply February 10, 2014
  • 15 replies
  • Hi there, I'm new here and first time starting a post, Been lurking for a bit and trying to find info to help my husband fight with cancer. My husband was diagnosed at 34, 3 years ago with poorly differentiated ...

Has anyone developed Osteoporosis after lung surgery?

  • By pbedtelyon · New reply February 9, 2014
  • 10 replies
  • 2 years ago, before I knew I had a carcinoid tumor, I had a Bone Density test that showed I was slightly Osteopenic. They had done the test d/t low Vitamin D levels. Last year I dealt with a LLL lobectomy ...

Post carcinoid update

  • By pbedtelyon · New reply January 29, 2014
  • 4 replies
  • I got the good news from my Oncologist today that my labs came back normal and that means no more carcinoid tumors are growing in my body! I don't have to see him for another year. I am Happy Happy Happy ...

Large Cell Neuroendocrine Cancer

Vipersgirl (Inactive)
  • By Vipersgirl (Inactive) · New reply January 28, 2014
  • 6 replies
  • I was diagnosed with large cell neuroendocrine cancer of the lung October 2012; when I was 50. I had surgery the end of October to remove the left upper lobe of my lung. The cancer was attached to my ...

"In-Person" Support Group

  • By Mjmimi · New reply January 17, 2014
  • 2 replies
  • I know I might be addressing just a small amount of people BUT anyone in Central New Jersey to Bucks County, PA, USA area with NETS interested in forming an in - person support that could meet on a regular ...

post lobectomy abdominal issues

  • By patara · New reply January 10, 2014
  • 5 replies
  • Have been reading older posts here and wondered if there are any recent developments? 3 months post lung lobectomy and suffering constant bloating and burping - all this started post surgery ( no chemo ...

gas, gas and on it goes!

  • By patara · New reply January 8, 2014
  • 8 replies
  • I had my upper Right Lobectomy and am still suffering various strange 'effects' after 3 months - am in the UK so the meds are different here! Constant burping and weirdly very inflamed gums with horrible ...

intestinal issues following lung surgery/infection

  • By pbedtelyon · New reply December 30, 2013
  • 4 replies
  • I am 7 months post left lower lobe lobectomy and have developed rectal bleeding with colitis this past week. I have been struggling with sinus/upper respiratory infections for the past month and was on ...

Stomach bloating and Burping

  • By patara · New reply December 21, 2013
  • 1 reply
  • I had a VATS upper lobectomy 3 months ago for a Carcinoid Lung Tumour - since then I have suffered constantly from stomach distention, gas and burping together with a constant choking feeling and bad ...

We need new net discussions

  • By LBfree · New reply December 17, 2013
  • 27 replies
  • I have been visiting this discussion group since I found out I have lung NET with surgery Tuesday. The surgery will help nail down the typical verses atypical questions. My point is that the lovable lung ...
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