Neuroendocrine Carcinoma of Esophagus

concernedDIL
concernedDIL Member Posts: 10
in Esophageal Cancer #1
Hi,

I just joined this group in the hopes of finding out some statistics 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

Comments

  • ritawaite13
    ritawaite13 Member Posts: 236
    #2
    Hi Amy,
    Welcome to the best place you'll find for information. Unfortunately, I hadn't heard of Neuroendocrine Carcinoma of the Esophagus so I googled it. You're right though, it's even more rare than Adeno Carcinoma or Squamous Cell Carcinoma which is what most on here are unfortunate enough to be familiar with. What I can tell you is that cancer of any kind in the esophagus is not a good thing and depending on what stage the cancer is will determine the recommended course of treatment. Has your mother in law been staged? It sounds like she's in Pennsylvania because you talked about U Penn. I know there is a doctor in Pennsylvania who is expert in esophageal cancer surgeries. For the life of me I can't remember his name but I know it starts with an "L" and I know someone with more knowledge of him will be chiming in here soon. Trust me, Amy, you've come to a wonderful site with caring, knowledgeable people who will tell you the right questions to ask and give you information that you can actually understand without all the medical mumbo jumbo that's so hard to decipher. Beware though because nothing is sugar coated on here. This is an honest bunch who have walked or are walking a very similar road. My own husband was diagnosed with stage IV Adeno Carcinoma of the Esophagus and lived just 15 weeks after being diagnosed. Many on here who are of a lesser stage have had success with chemo, radiation and surgery. Check back here often and I know you won't be disappointed with the others you'll encounter here.
    Rita
  • sandy1943
    sandy1943 Member Posts: 824
    #3
    Amy, welcome!
    So sorry your
    Amy, welcome!
    So sorry your mother n law has this diagnoses. I am not familiar with this type of cancer, but the stats do look bad. But the one thing we all know is, we are not a statistic. It pays to gain knowledge but so often what we read can be very scary.
    What is your MIL's stage? If the test indicate it has spread to the liver, it is stage Iv, which means they can't do surgery.Please find out and let us know. We have people that have stage IV or are caregivers of Stage IV that have a wealth of information.
    Talk to your inlaws and see if they will share more information.If chemo has been started, the doctor should have already given them information.
    Some chemos are very bad on the kidneys, so if she already has a problem, it would be neccesary to change it.
    Her treatment schedule sounds very much like mine was.
    The journey ahead will be rough for you all. We will be praying. Please get back to us with some more information,
    Sandra
  • TerryV
    TerryV Member Posts: 887
    #4
    UPMC by Dr. James D. Luketich
    William, the "mentor" of this board, had an MIE with Dr. Luketich over 9 years ago. He was, however, a Stage 3. I believe that William has contact info for Dr. Luketich in a several posts around the forum.

    Dr. Luketich is a pioneer in the Esophageal Cancer field. If UPMC is near you, Amy, I would recommend getting 2nd or 3rd opinions there from Dr. Luketich or one of his colleagues. They are "the Pros" in EC.

    We are here for questions, shoulders to lean on, ears to vent to, and more than willing to share the good and the bad of our experiences to help you understand what you're facing.

    Prayers are directed your way for your mother-in-law, for the whole family even, as you begin this roller coaster of a journey.

    Love & Hugs,

    Terry
    Wife to Nick, age 48 y.o.
    dx T3N1M0 05/19/11
    THE 09/08/11
    Clean Path 09/13/11
  • NikiMo
    NikiMo Member Posts: 342
    #5
    TerryV said:

    UPMC by Dr. James D. Luketich
    William, the "mentor" of this board, had an MIE with Dr. Luketich over 9 years ago. He was, however, a Stage 3. I believe that William has contact info for Dr. Luketich in a several posts around the forum.

    Dr. Luketich is a pioneer in the Esophageal Cancer field. If UPMC is near you, Amy, I would recommend getting 2nd or 3rd opinions there from Dr. Luketich or one of his colleagues. They are "the Pros" in EC.

    We are here for questions, shoulders to lean on, ears to vent to, and more than willing to share the good and the bad of our experiences to help you understand what you're facing.

    Prayers are directed your way for your mother-in-law, for the whole family even, as you begin this roller coaster of a journey.

    Love & Hugs,

    Terry
    Wife to Nick, age 48 y.o.
    dx T3N1M0 05/19/11
    THE 09/08/11
    Clean Path 09/13/11

    Philly patient here
    Hi Amy,

    My husband was diagnosed with stage 2 EC in May of this year. We too are from the Philly area and sought treatment at UofP. We have been very happy with the medical and radiation oncologists and their teams. Who is you MILs doctor? My husband had adenocarcinoma, he had 5 rounds of FOLFOX and 28 days of radiation, he then went to John Hopkins for surgery. He had a clean pathology report but is doing one more round of clean up chemo. While Dr. Luketich is an expert in EC he is a surgeon, and I am not certain your MILs treatment plan includes surgery. If it does I would suggest making the trek to Pittsburgh for second opinion. It is my opinion that your MIL is in wonderful hands at UofP, but I am biased.

    Niki
    Wife to Jeff T2N1M0
    IL 9/6/11
    Clean Pathology
  • concernedDIL
    concernedDIL Member Posts: 10
    #6
    ritawaite13 said:

    Hi Amy,
    Welcome to the best place you'll find for information. Unfortunately, I hadn't heard of Neuroendocrine Carcinoma of the Esophagus so I googled it. You're right though, it's even more rare than Adeno Carcinoma or Squamous Cell Carcinoma which is what most on here are unfortunate enough to be familiar with. What I can tell you is that cancer of any kind in the esophagus is not a good thing and depending on what stage the cancer is will determine the recommended course of treatment. Has your mother in law been staged? It sounds like she's in Pennsylvania because you talked about U Penn. I know there is a doctor in Pennsylvania who is expert in esophageal cancer surgeries. For the life of me I can't remember his name but I know it starts with an "L" and I know someone with more knowledge of him will be chiming in here soon. Trust me, Amy, you've come to a wonderful site with caring, knowledgeable people who will tell you the right questions to ask and give you information that you can actually understand without all the medical mumbo jumbo that's so hard to decipher. Beware though because nothing is sugar coated on here. This is an honest bunch who have walked or are walking a very similar road. My own husband was diagnosed with stage IV Adeno Carcinoma of the Esophagus and lived just 15 weeks after being diagnosed. Many on here who are of a lesser stage have had success with chemo, radiation and surgery. Check back here often and I know you won't be disappointed with the others you'll encounter here.
    Rita

    Hi Rita,
    Thank you for your
    Hi Rita,

    Thank you for your reply. Honesty is what I came here for. No one can tell me better and more current information than the people currently dealing with this awful disease!

    My in-laws live by the NJ Shore...so U of Penn is about 2 hrs for them. The doctor they are seeing was recommended by the first doctor she saw in her area.

    Amy
  • concernedDIL
    concernedDIL Member Posts: 10
    #7
    sandy1943 said:

    Amy, welcome!
    So sorry your
    Amy, welcome!
    So sorry your mother n law has this diagnoses. I am not familiar with this type of cancer, but the stats do look bad. But the one thing we all know is, we are not a statistic. It pays to gain knowledge but so often what we read can be very scary.
    What is your MIL's stage? If the test indicate it has spread to the liver, it is stage Iv, which means they can't do surgery.Please find out and let us know. We have people that have stage IV or are caregivers of Stage IV that have a wealth of information.
    Talk to your inlaws and see if they will share more information.If chemo has been started, the doctor should have already given them information.
    Some chemos are very bad on the kidneys, so if she already has a problem, it would be neccesary to change it.
    Her treatment schedule sounds very much like mine was.
    The journey ahead will be rough for you all. We will be praying. Please get back to us with some more information,
    Sandra

    Hi Sandra,
    They didn't
    Hi Sandra,

    They didn't "Stage it". From what I read, once you learn it is "Small cell" it is classified as LD or ED. And, since there are METs in the liver, hers would be ED...and I think that is equivalent to stage IV. The first doctor said they did scans of the liver and saw nothing...2 days later they saw the METs on the liver. So, I don't know if that is how fast it is reproducing, or if it was a faulty scan somehow.
  • concernedDIL
    concernedDIL Member Posts: 10
    #8
    TerryV said:

    UPMC by Dr. James D. Luketich
    William, the "mentor" of this board, had an MIE with Dr. Luketich over 9 years ago. He was, however, a Stage 3. I believe that William has contact info for Dr. Luketich in a several posts around the forum.

    Dr. Luketich is a pioneer in the Esophageal Cancer field. If UPMC is near you, Amy, I would recommend getting 2nd or 3rd opinions there from Dr. Luketich or one of his colleagues. They are "the Pros" in EC.

    We are here for questions, shoulders to lean on, ears to vent to, and more than willing to share the good and the bad of our experiences to help you understand what you're facing.

    Prayers are directed your way for your mother-in-law, for the whole family even, as you begin this roller coaster of a journey.

    Love & Hugs,

    Terry
    Wife to Nick, age 48 y.o.
    dx T3N1M0 05/19/11
    THE 09/08/11
    Clean Path 09/13/11

    Thank you for the
    Thank you for the information, Terry. I am looking him up right now and will see if my husband wants to make the suggestion to his parents. I really am not sure if they realize how rare her condition is.
  • TerryV
    TerryV Member Posts: 887
    #9
    concernedDIL said:

    Thank you for the
    Thank you for the information, Terry. I am looking him up right now and will see if my husband wants to make the suggestion to his parents. I really am not sure if they realize how rare her condition is.

    Niki has made a good point
    Dr. L is first and foremost a surgeon. He, personally, may have little to offer your MIL if she is Stage 4 (or equivalent). However, I'm certain the staff and associates there would be tops in the field as well.

    Niki and her husband Jeff have personal experience with the hospital system that your MIL is using. I know they came away very pleased with the treatment and overall care provided to Jeff.

    We are here for you! Just shout with questions, concerns or frustrations.

    Love & Hugs!

    Terry
  • concernedDIL
    concernedDIL Member Posts: 10
    #10
    NikiMo said:

    Philly patient here
    Hi Amy,

    My husband was diagnosed with stage 2 EC in May of this year. We too are from the Philly area and sought treatment at UofP. We have been very happy with the medical and radiation oncologists and their teams. Who is you MILs doctor? My husband had adenocarcinoma, he had 5 rounds of FOLFOX and 28 days of radiation, he then went to John Hopkins for surgery. He had a clean pathology report but is doing one more round of clean up chemo. While Dr. Luketich is an expert in EC he is a surgeon, and I am not certain your MILs treatment plan includes surgery. If it does I would suggest making the trek to Pittsburgh for second opinion. It is my opinion that your MIL is in wonderful hands at UofP, but I am biased.

    Niki
    Wife to Jeff T2N1M0
    IL 9/6/11
    Clean Pathology

    Hi Niki,
    You're right ---
    Hi Niki,

    You're right --- from what I have been told, I don't think her plan includes surgery. I do like what I read about Dr. L, though. My MIL didn't even want to start treatment..she doesn't want our kids to see her with all of the side effects that can come from it. So, I am not sure how keen they will be on heading so far away for another opinion. I will talk to DH tonight.

    THanks!
  • concernedDIL
    concernedDIL Member Posts: 10
    #11
    NikiMo said:

    Philly patient here
    Hi Amy,

    My husband was diagnosed with stage 2 EC in May of this year. We too are from the Philly area and sought treatment at UofP. We have been very happy with the medical and radiation oncologists and their teams. Who is you MILs doctor? My husband had adenocarcinoma, he had 5 rounds of FOLFOX and 28 days of radiation, he then went to John Hopkins for surgery. He had a clean pathology report but is doing one more round of clean up chemo. While Dr. Luketich is an expert in EC he is a surgeon, and I am not certain your MILs treatment plan includes surgery. If it does I would suggest making the trek to Pittsburgh for second opinion. It is my opinion that your MIL is in wonderful hands at UofP, but I am biased.

    Niki
    Wife to Jeff T2N1M0
    IL 9/6/11
    Clean Pathology

    My MIL is seeing Dr.
    My MIL is seeing Dr. Giantonio in the Gastrointestinal Cancer program.
  • unclaw2002
    unclaw2002 Member Posts: 599
    #12
    concernedDIL said:

    Hi Niki,
    You're right ---
    Hi Niki,

    You're right --- from what I have been told, I don't think her plan includes surgery. I do like what I read about Dr. L, though. My MIL didn't even want to start treatment..she doesn't want our kids to see her with all of the side effects that can come from it. So, I am not sure how keen they will be on heading so far away for another opinion. I will talk to DH tonight.

    THanks!

    Dr. Gibson at UPMC
    Hi,

    Dr. Gibson is the oncologist at UPMC and a pioneer and researcher in EC. He studied at Johns Hopkins and the NIH before joining the team at Pittsburgh. Here is his bio http://www.upmccancercenters.com/search/page_physbio.cfm?id=30509 (cut and paste into your browser)

    I went with my dad to various medical facilities including Sloan in NY and MD Anderson in Houston. Dr. Gibson was one of the most amazing and caring physicians I encountered on our journey. He is a straight shooter and will talk to you. He is involved in cutting edge research, as many of the top oncologists in this field are, and will go the extra mile for his patients. And his support staff is just as great as he is.

    Good luck,
    Cindy
  • concernedDIL
    concernedDIL Member Posts: 10
    #13
    unclaw2002 said:

    Dr. Gibson at UPMC
    Hi,

    Dr. Gibson is the oncologist at UPMC and a pioneer and researcher in EC. He studied at Johns Hopkins and the NIH before joining the team at Pittsburgh. Here is his bio http://www.upmccancercenters.com/search/page_physbio.cfm?id=30509 (cut and paste into your browser)

    I went with my dad to various medical facilities including Sloan in NY and MD Anderson in Houston. Dr. Gibson was one of the most amazing and caring physicians I encountered on our journey. He is a straight shooter and will talk to you. He is involved in cutting edge research, as many of the top oncologists in this field are, and will go the extra mile for his patients. And his support staff is just as great as he is.

    Good luck,
    Cindy

    Thanks Cindy. I was
    Thanks Cindy. I was researching all day/night yesterday. I did find out that U of Penn is one of the few national hospitals that has a team that has specialized in neuroendocrine carcinoma...doctors there are some of the firsts to lead research in this area. So, I do think they are in the right place.

    Now, if someone could tell me how to deal when my husband says "My mom is dying...I need to be ready because I am going to have to take care of everything". :-(

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