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Looking for information on small cell Neuroendocrine Carcinoma with METs to liver

concernedDIL
Posts: 10
Joined: Nov 2011

Hi,

I just joined this group in the hopes of finding out some information that will help me understand what my family is about to endure. On October 10 my 66 yr old mother in law had an endoscopy becuase of a gastro pain...they thought she had reflux. (She has a terrible pain in her chest that she felt starting in the summer...she would take Tums but nothing helped. She also had bouts of diarrhea since that time.

Well, with the endoscopy, they found a tumor in her esophagus. My father in law said "all the cells surrounding the tumor are dead...so no surgery." A biopsy of her esohpageal tumor came back as Neuroendocrine carcinoma. The doctor then did full body scans. The scans also showed METs to her liver. A liver biopsy was done. The results of this biopsy showed that it was of the same type of cancer as the esophagus, but it also added that it is "small cell" type. What does all of this mean? SSC is a scary thing in all of the reading I have done online. And, from what I read, it seems like small cell neuroendocrince carcinoma of the esophagus is extremely rare <2.8% of all EC!

The liver biopsy results were received this past Monday (11/14) and on Thursday (11/17) she was admitted to U Penn for 3 days of chemo (not sure of exactly what she was given...hubby is giving me the summary that he gets from his dad). She was supposed to be 'hooked up' for 6 hours on Thursday, then 1 hr on Fri & Sat. Unfortunately, when they went to start it all, her kidneys were not up to par. (not sure what was off -- she said some levels were not what they should be). She was told her kidneys were aged beyond her actual age so they would be switching the treatment meds to something else. So, her 6 hour treatment was Friday and her 2- 1 hour treatments were yesterday and today. She was discharged, but goes back tomorrow for some shot to regulate her white blood cell count. She then goes back in 3 weeks for another round of treatment.

Does anyone have any experience with something like this? My in-laws and husband all said the doctor is optomistic...saying they think they will get good results from the chemo. However, based on what I read online, it seems that small cell cancers are not able to be beaten...that they recur no matter what course of treatment. Is small cell neuroendocrine carcinoma a unique circumstance? Or are they misinformed?

Thanks,

Amy

Roxyroller
Posts: 1
Joined: Feb 2012

Hi Amy,
You likely have more info by now. My mother had this - small cell endocrinactic carcinoma - and it was originally diagnosed because her organs were shutting down (blood tests showed levels were off). It seemed to have started in the liver, but doctors said they could not confirm the primary. They said it was a lung cancer but was not any sign in lungs. It did spread and we were to manage the pain through a complicated schedule of meds. The chemo extended her life, which was likely from 2 or 3 weeks to 9 months. The last two or 3 were quite painful as it spread and she was disorientated. It is a rare and very aggressive cancer. It comes down to pain management and quality of life. My mother was 65 when she died, 9 months after diagnosis. I am sorry if this sounds bleak but I know when I was searching for info there wasn't much out there and I wanted to get a true picture. Some doctors present a more optimistic picture maybe for the sake of the patient's morale. Your mother in law may have a different prognosis, I am only telling you what I know from my own experience and limited reading. I am no medical professional.
I hope this helps somewhat...
All the best,
Julie

Lenimb
Posts: 2
Joined: Apr 2012

Hello Amy. My family is going through this now. My mother in law was diagnosed with this type of cancer mid January. It has metastized to her liver. She went to emergency end of Dec bc she was having a tough time breathing. The emergency doc found the tumor and a biopsy confirmed that she had many tumors that were malignant. Like you I am the third party as my husband is the one telling me the results from his father. My mother in law has lost a considerable amount of weight within just a months time. She has only undergone 3 chemo treatments so far. The first 2 were only 3 hrs as the doc said her liver enzymes were too high. This third treatment on April 2nd was for 7 hours. She was swollen from below her breast to the tops of her feet. With Lasiks, the swelling is finally starting to come down. How is your mom in law? Can you give me any suggestions on keeping her comfortable? You are a couple months ahead of usin this battle. Would love some suggestions. Thanks so much.

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