Neuroendocrine Carcinoma

4 Posts | Page(s): 1 

Neuroendocrine Carcinoma

by mg149 on Wed Nov 30, 2016 02:15 AM

Quote | Reply

On October 13th, 2015, my wife of 48 years was diagnosed with Neuroendocrine Carcinoma. She had been suffering with pain in her left hip for about a month when we decided to find out if it was something more than just a sprain. We went to an orthopedic doctor who immediately took an x-ray and discovered a 2-1/2 cm tumor on the head of her left femur. The following day she was admitted to Long Island Jewish/North Shore Hospital for subsequent surgery to have a metal rod inserted in her femur to reinforce it because of the imminent danger of breaking. In the course of the operation and subsequent scans, tumors were found on her spine, pancreas, liver, adrenal glands and kidneys. It was diagnosed as small cell Neuroendocrine Carcinoma. The surgeon said it was treatable, and asked us where we wanted the treatment done. We chose Memorial SLoan Kettering's Mercy Hospital facility in Rockville Centre, New York, one of the most highly regarded cancer treatment centers in the area.

The oncologists there started her with Etopocide/Cisplatin chemotherapy via a port previously inserted in her chest. Soon after beginning the chemo the radiology oncologist gave her radiation on the hip tumor and on her spine for one tumor which was threatening impingment of her spinal cord just below the base of the skull at vertabrae C1. There were other tumors along the length of her spine, however, which were apparently less threatening. The chemo was administered in rounds of three cycles: 3 days of chemo 1 day of Nulasta to help replace white blood cells, three weeks off, another cycle, three weeks off and then a third cycle to complete the first round. After this first round there was some improvement described to us by the doctor, specifically, the pancreas tumor dissolved, a few of the liver tumors disappeared. She had virtually no adverse reactions to the chemo that are normally expected except hair loss. No nausea. She was then given a second round with basically similar outcomes. Right after the first cycle of the third round, I hear her fall on the floor in the bedroom when she tried to go to the bathroom. She was so weak she couldn't stand up. I rushed her to the hospital that night and she was admitted for observation. After being in the hospital for two weeks she was transferred to the rehab floor for another two weeks in an effort to strengthen her so that she could be ambulatory sufficient to go home. At this point the oncologist decided that the combination of Etopocide/Cisplatin was too strong and changed the chemo to Irinotecan. This drug gave her severe diarrhea and eventually she became totally unable to control her movements to the extent that she couldn't hold a fork or spoon to feed herself. Her final Petscan showed the cancer had totally engulfed her liver and by the middle of August 2016 she expired.

The reason I'm posting this is to make the reader aware that this disease is not easily treated and many times untreatable especially if it is discovered at the late stage like my wife's was. It's my understanding that small cell Neuroendocrine cancers are slow growing and very often symptoms do not appear until it's advanced. My sincerest hope is that there are people who will discover this insidious and rare form of cancer early on so that their chances for survival are improved. Looking back, knowing what I know now, I think I would have lessened my wife's suffering by letting the disease take it's course rather than pursuing a futile effort to extend her life.  

RE: Neuroendocrine Carcinoma

by Bonnieself on Mon Dec 05, 2016 05:58 PM

Quote | Reply

My mom just passed away from neuroendocrine carcinoma. She went in for a biopsy and went home on hospice.  It was so fast we are still struggling with it all.  Thank you for sharing your story and for your last paragraph on what you are attempting to share.  We feel so alone in this diagnosis because it isn't a common kind of cancer.  Tomorrow will be four weeks and we are no closer to finding answers than when our jouney started.

RE: Neuroendocrine Carcinoma

by mg149 on Sat Dec 10, 2016 06:03 PM

Quote | Reply

On Dec 05, 2016 5:58 PM Bonnieself wrote:

My mom just passed away from neuroendocrine carcinoma. She went in for a biopsy and went home on hospice.  It was so fast we are still struggling with it all.  Thank you for sharing your story and for your last paragraph on what you are attempting to share.  We feel so alone in this diagnosis because it isn't a common kind of cancer.  Tomorrow will be four weeks and we are no closer to finding answers than when our jouney started.

I'm very sorry for your loss. It is my sincere belief that avoiding the chemo/radiation attempts to cure this disease in such a late stage was the right choice made by your family. Feel confident that by doing so she went with dignity and with much less suffering. We deluded ourselves into thinking my wife could survive, and I'm convinced the doctors were influenced by our hopeful expectations, and wanted to at least make an attempt to save her even though they knew it was futile. As I mentioned in my first post, I wish I had made the same decision early on that you did. Your family and mine remain with deep grief at the loss of our loved one. There are no words that can lessen what we are feeling. Hopefully the passage of time will.

RE: Neuroendocrine Carcinoma

by Meech90 on Sat Dec 10, 2016 06:31 PM

Quote | Reply

On Nov 30, 2016 2:15 AM mg149 wrote:

On October 13th, 2015, my wife of 48 years was diagnosed with Neuroendocrine Carcinoma. She had been suffering with pain in her left hip for about a month when we decided to find out if it was something more than just a sprain. We went to an orthopedic doctor who immediately took an x-ray and discovered a 2-1/2 cm tumor on the head of her left femur. The following day she was admitted to Long Island Jewish/North Shore Hospital for subsequent surgery to have a metal rod inserted in her femur to reinforce it because of the imminent danger of breaking. In the course of the operation and subsequent scans, tumors were found on her spine, pancreas, liver, adrenal glands and kidneys. It was diagnosed as small cell Neuroendocrine Carcinoma. The surgeon said it was treatable, and asked us where we wanted the treatment done. We chose Memorial SLoan Kettering's Mercy Hospital facility in Rockville Centre, New York, one of the most highly regarded cancer treatment centers in the area.

The oncologists there started her with Etopocide/Cisplatin chemotherapy via a port previously inserted in her chest. Soon after beginning the chemo the radiology oncologist gave her radiation on the hip tumor and on her spine for one tumor which was threatening impingment of her spinal cord just below the base of the skull at vertabrae C1. There were other tumors along the length of her spine, however, which were apparently less threatening. The chemo was administered in rounds of three cycles: 3 days of chemo 1 day of Nulasta to help replace white blood cells, three weeks off, another cycle, three weeks off and then a third cycle to complete the first round. After this first round there was some improvement described to us by the doctor, specifically, the pancreas tumor dissolved, a few of the liver tumors disappeared. She had virtually no adverse reactions to the chemo that are normally expected except hair loss. No nausea. She was then given a second round with basically similar outcomes. Right after the first cycle of the third round, I hear her fall on the floor in the bedroom when she tried to go to the bathroom. She was so weak she couldn't stand up. I rushed her to the hospital that night and she was admitted for observation. After being in the hospital for two weeks she was transferred to the rehab floor for another two weeks in an effort to strengthen her so that she could be ambulatory sufficient to go home. At this point the oncologist decided that the combination of Etopocide/Cisplatin was too strong and changed the chemo to Irinotecan. This drug gave her severe diarrhea and eventually she became totally unable to control her movements to the extent that she couldn't hold a fork or spoon to feed herself. Her final Petscan showed the cancer had totally engulfed her liver and by the middle of August 2016 she expired.

The reason I'm posting this is to make the reader aware that this disease is not easily treated and many times untreatable especially if it is discovered at the late stage like my wife's was. It's my understanding that small cell Neuroendocrine cancers are slow growing and very often symptoms do not appear until it's advanced. My sincerest hope is that there are people who will discover this insidious and rare form of cancer early on so that their chances for survival are improved. Looking back, knowing what I know now, I think I would have lessened my wife's suffering by letting the disease take it's course rather than pursuing a futile effort to extend her life.  

Small cell neuroendocrine carcinomas are not slow growing tumours. They're the grade 3 variant of neuroendocrine tumours, they're rapidly fatal and quickly metastasize. In the lung variant, the survival rate in Stage 1 is about 20%. The more common neuroendocrine tumours are slow growing (previously called a carcinoid), but this is one of the more rapidly fatal cancers around.
4 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.