Good news!

SheriC
SheriC Member Posts: 8 Member
in Esophageal Cancer #1

I posted a while back about my mother, who was recently diagnosed with esophageal adenocarcinoma.  She is 71 years old and didn’t even know she had Barrett’s Esophagus or acid reflux, since it was “silent reflux” with no symptoms.  She found out about the cancer when she was diagnosed with anemia and went to a local hospital for a blood transfusion and endoscopy.  After the endoscopy, she was told she had a hiatal hernia, and a week later, she was told that biopsies taken during the procedure showed that she had Barrett’s as well as esophageal cancer.  They quickly set her up for the usual tests and scans and made an appointment for her to speak with a surgeon at their “sister” hospital in Greenville, NC, which is about an hour away from her.  The surgeon at this hospital was not very forthcoming with any of the test results, which frustrated my mother.   He also performed an endoscopic ultrasound, but told my mother that he would not do it unless she agreed to have a port placed at the same time.   This was before he had ever told her what any of the other scans or tests even showed.  She never saw him after the procedure and had to nag them to finally get a written report from his office.  He staged my mother’s cancer as T2N1 and recommended chemo and total esophagogectomy.  The lack of response from this surgeon did finally prompt my mom to go to Duke and get a second opinion, where they performed their own endoscopic ultrasound.  At Duke, her cancer was staged at T1N0, and she recently had an endoscopic mucosal resection rather than the complete removal of her esophagus.  She received word from the surgeon at Duke this morning that the margins were clear.  Their plan is to perform an ablation next month and follow up every two or three months.  I realize that this is a tricky form of cancer, and this doesn’t mean she is out of the woods, but I think this was the best news we could have had in this situation.    It’s striking to me though, that two different hospitals gave two different diagnoses and two very different treatment plans.  She had a port placed by the “local” surgeon which will now have to be removed and wasn’t even necessary in the first place.  I think this just reiterates what the experts on this forum always say:  Get a second opinion, and go to a place that treats this type of cancer ALOT.  It’s worth the inconvenience in the long run.  I am so grateful to all of the regulars at this message board.  You guys gave great advice and support and helped me and my mom navigate through a horrible, scary time.  I know I will still check in regularly, since this is an ongoing process, but I thought I would post some good news and thank everyone.  

Comments

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #2
    Great News!!

    Hello Sheri,

    I love to hear great news like you have.  Sounds like you guys made the right decision to go to Duke.  I hope everything continues to go down the "best news we could have had" road.  I'm rooting for a complete cure and, with the minimal surgery your mother required, a return to a fairly normal life.

    You mention that you find it striking that two different hospitals gave different diagnoses and treatment plans.  This is actually extemely common.  It is why it is of the utmost importance to go to top quality hospitals and doctors.  They are not all remotely "the same".  You have likely literally saved your mother's life by convincing her to go to Duke instead of the more convenient hospital and doctors.  I hope you feel good about doing that, you should.  It's awful that some people don't understand that until it is too late.  You usually only get one shot at this and it is absolutely life and death stuff.  

    I've been sitting on this board for years babbling the same stuff over and over.  Please be a success story who gives back and helps to steer the next people in this situation in the right direction.

    Congratulations on the great results and continued best wishes,

    Ed

  • paul61
    paul61 Member Posts: 1,391 Member
    #3
    It is wonderful to hear your Mom's good news

    I am so glad your Mom had you as an advocate!

    If I remember correctly she wanted to have treatment at her local hospital because it was close and familiar. I am so glad you talked her into considering a major teaching hospital for a second opinion. As Ed said above, those of us who have followed this forum for a long time see the same story over and over again. People get very different treatment approaches, and sometimes unfortunately, very different treatment outcomes from different hospitals. One thing that definitely makes a difference in a cancer survivor’s outcome is; do they have someone who will act as their advocate and research and seek out the best treatment available. I am sure they will be following your mother closely with frequent endoscopies and scans.  May the test results continue to be good news!!

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
    Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
    Eight Year Survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

  • 1979bmg
    1979bmg Member Posts: 48 Member
    #4
    Wonderful news and

    Wonderful news and congratulations, she has you to thank for speaking up and being proactive. And you caught it relatively early compared to a lot of us on here!

     

    May God continue to watch over both of you going forward.

     

    I had silent reflux my whole life too, because I waited too long to get checked out for my other symptoms, I was diagnosed T3 N2 inoperable. I have had nearly a complete metabolic response to my treatment, the next set of scans should prove it.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #5
    1979bmg said:

    Wonderful news and

    Wonderful news and congratulations, she has you to thank for speaking up and being proactive. And you caught it relatively early compared to a lot of us on here!

     

    May God continue to watch over both of you going forward.

     

    I had silent reflux my whole life too, because I waited too long to get checked out for my other symptoms, I was diagnosed T3 N2 inoperable. I have had nearly a complete metabolic response to my treatment, the next set of scans should prove it.

    1979bmg!~If U R A "T3N2" EC patient~why is it inoperable? :(

     

    Hello 1979bmg ~ Have read several of your posts and wrote you a letter tonight, so long that I put it on a separate post here:  https://csn.cancer.org/node/316138.  My basic question is, “Exactly what stage of Esophageal Cancer do you have?  Initially you wrote that you were Stage IV.  Then today I see that you say you are a Stage “T3N2”.  Normally one who is diagnosed as a Stage T3 EC patient will have pre-op chemo and radiation and then an Esophagectomy.  So when you have time, if you will, please tell me why you would need “chemo and radiation” after a totally successful clinical trial and all your scans show an “all clear?”  Why would you not be eligible for an Esophagectomy.  And if you were, the “top-of-the-line” esophagectomy would be the totally laparoscopic Esophagectomy (MIE)-- the kind my husband had 15 years ago! 

     

    Looking forward to hearing from you. 

     

    Loretta

     

  • 1979bmg
    1979bmg Member Posts: 48 Member
    #6
    LorettaMarshall said:

    1979bmg!~If U R A "T3N2" EC patient~why is it inoperable? :(

     

    Hello 1979bmg ~ Have read several of your posts and wrote you a letter tonight, so long that I put it on a separate post here:  https://csn.cancer.org/node/316138.  My basic question is, “Exactly what stage of Esophageal Cancer do you have?  Initially you wrote that you were Stage IV.  Then today I see that you say you are a Stage “T3N2”.  Normally one who is diagnosed as a Stage T3 EC patient will have pre-op chemo and radiation and then an Esophagectomy.  So when you have time, if you will, please tell me why you would need “chemo and radiation” after a totally successful clinical trial and all your scans show an “all clear?”  Why would you not be eligible for an Esophagectomy.  And if you were, the “top-of-the-line” esophagectomy would be the totally laparoscopic Esophagectomy (MIE)-- the kind my husband had 15 years ago! 

     

    Looking forward to hearing from you. 

     

    Loretta

     

    T3 N2

    Hi Loretta,

     

    T3 N2 is not a stage...that is a code used to clarify the esophageal cancer in more detail. That is a code that decribes the tumor itself, and how far cancer has spread into the lining of the esophagus. My T3 means that the mass is growing into the outer lining of the esophagus. T4 would be even more severe, that has grown completely through and outside the outer wall of the esophagus. So T 0, T1, and T2 are less severe than T3, but they are specific to the esophageal tumor and do not indicate a stage.

     

    The N indicates the number of lymph nodes nodes it has spread to My n2 I believe means 6 or more. Once again, these numbers have nothing to do with actual staging, staging is usually calculated by the actual farthest distance that the cancer has visibly spread.

    There is also sometimes an M following T and N, that I indicates the number of organs that cancer has spread to.

     

    I was diagnosed Stage 4 in August based on how far it had spread already, the distance from the tumor to the farthest infected lymph nodes. If it had spread to an organ, from my understanding they would determine the stage by the distance from the main tumor, to the distance to the farthest infected area.

     

    My first set of scans said stage IV (T3, N2). Exactly like that.

     

    Right now I am close to remission with possibly just one infected lymph node remaining...I don't really know If I am considered a stage 4 still at this point.

     

     

  • 1979bmg
    1979bmg Member Posts: 48 Member
    #7
    1979bmg said:

    T3 N2

    Hi Loretta,

     

    T3 N2 is not a stage...that is a code used to clarify the esophageal cancer in more detail. That is a code that decribes the tumor itself, and how far cancer has spread into the lining of the esophagus. My T3 means that the mass is growing into the outer lining of the esophagus. T4 would be even more severe, that has grown completely through and outside the outer wall of the esophagus. So T 0, T1, and T2 are less severe than T3, but they are specific to the esophageal tumor and do not indicate a stage.

     

    The N indicates the number of lymph nodes nodes it has spread to My n2 I believe means 6 or more. Once again, these numbers have nothing to do with actual staging, staging is usually calculated by the actual farthest distance that the cancer has visibly spread.

    There is also sometimes an M following T and N, that I indicates the number of organs that cancer has spread to.

     

    I was diagnosed Stage 4 in August based on how far it had spread already, the distance from the tumor to the farthest infected lymph nodes. If it had spread to an organ, from my understanding they would determine the stage by the distance from the main tumor, to the distance to the farthest infected area.

     

    My first set of scans said stage IV (T3, N2). Exactly like that.

     

    Right now I am close to remission with possibly just one infected lymph node remaining...I don't really know If I am considered a stage 4 still at this point.

     

     

    Inoperable

    They never said 100% no to a surgery, but being stage 4 I would probably have to do an incredible amount of highly focused chemo-radiation first if an operation was even considered. 

    CT and PET scans do not always show all cancer that is remaining. As a stage 4 they are pretty much saying no based on how far it initially spread, and a very high risk of recurring.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #8
    1979bmg said:

    Inoperable

    They never said 100% no to a surgery, but being stage 4 I would probably have to do an incredible amount of highly focused chemo-radiation first if an operation was even considered. 

    CT and PET scans do not always show all cancer that is remaining. As a stage 4 they are pretty much saying no based on how far it initially spread, and a very high risk of recurring.

    1979bmg~Stages of Esophageal Cancer R very specific

    Hello again -

    In my separate letter to you I outlined the "stages of cancer", but I will put them here as well, so others will know exactly what the numbers indicate.  I'm very familiar with the "TNM" stages.  For my husbands "T3" tumor - it meant that all four walls of the Esophagus were infiltrated with cancer.  The (Node) "N1"  indicated that it was in two local lymph nodes nearest the Esophagus.  The "M" stands for metastasis, and thankfully that was a "0".  So I will just put that particular reference here for everyone's information.  There are also "grades" to the cancer as well, but I only put the "stage" info here.  

    Loretta

    __________________________________________________________  

    1.  https://www.cancer.net/cancer-types/esophageal-cancer/stages

     “Esophageal Cancer: Stages

     Approved by the Cancer.Net Editorial Board, 12/2016

      ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. In addition to stage, a cancer’s growth may also be described by its grade, which describes how much cancer cells look like healthy cells. To see other pages, use the menu.

      Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting other parts of the body. Doctors use diagnostic tests to find out the cancer's stage, so staging may not be complete until all the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer.

     TNM staging system

     One tool that doctors use to describe the stage is the TNM system. Doctors use the results from diagnostic tests and scans to answer these questions:

     1.     Tumor (T): How deeply has the primary tumor grown into the wall of the esophagus and the surrounding tissue?

     2.     Node (N): Has the tumor spread to the lymph nodes? If so, where and how many?

     3.     Metastasis (M): Has the cancer metastasized to other parts of the body? If so, where and how much?

       

    The results are combined to determine the stage of cancer for each person. There are 5 stages: stage 0 (zero) and stages I through IV (1 through 4). The stage provides a common way of describing the cancer, so doctors can work together to plan the best treatments.

     Here are more details on each part of the TNM system for esophageal cancer:

       Tumor (T)

     Using the TNM system, the "T" plus a letter or number (0 to 4) is used to describe the tumor, including whether the cancer has grown into the wall of the esophagus or nearby tissue, and if so, how deep. Some stages are also divided into smaller groups that help describe the tumor in even more detail. Specific tumor stage information is listed below.

     TX: The primary tumor cannot be evaluated.

     T0: There is no cancer in the esophagus.

     Tis: This is called carcinoma (cancer) in situ. Carcinoma in situ is very early cancer. Cancer cells are in only 1 small area of the top lining of the esophagus without any spread into the lining.

     T1: There is a tumor in the lamina propria and the 2 inside layers of the esophagus called the submucosa. Cancer cells have spread into the lining of the esophagus.

     T2: The tumor is in the third layer of the esophagus called the muscularis propria. Cancer cells have spread into but not through the muscle wall of the esophagus.

      T3: The tumor is in the outer layer of the esophagus called the adventitia. Cancer cells have spread through the entire muscle wall of the esophagus into surrounding tissue.

      T4: The tumor has spread outside the esophagus into areas around it. Cancer cells have spread to structures surrounding the esophagus, including the large blood vessel coming from the heart called the aorta, the windpipe, diaphragm, and the pleural lining of the lung.

       Node (N)

     The “N” in the TNM staging system stands for lymph nodes. In esophageal cancer, lymph nodes near the esophagus and in the chest are called regional lymph nodes. Lymph nodes in other parts of the body are called distant lymph nodes.

     NX: The lymph nodes cannot be evaluated.

     N0: The cancer was not found in any lymph nodes.

     N1: The cancer has spread to 1 or 2 lymph nodes in the chest, near the tumor.

      N2: The cancer has spread to 3 to 6 lymph nodes in the chest, near the tumor.

     N3: The cancer has spread to 7 or more lymph nodes in the chest, near the tumor.

     

     Metastasis (M)

     The "M" in the TNM system indicates whether the cancer has spread to other parts of the body.

     MX: Metastasis cannot be evaluated.

     M0: The cancer has not spread to other parts of the body.

     M1: The cancer has spread to another part of the body…”

     _________________________________________________ 

     2.       https://www.cancer.net/cancer-types/esophageal-cancer/treatment-options

     Esophageal Cancer: Treatment Options

     “Approved by the Cancer.Net Editorial Board, 12/2016

     ON THIS PAGE: You will learn about the different ways doctors use to treat people with this type of cancer. To see other pages, use the menu.

     This section tells you the treatments that are the standard of care for this type of cancer. “Standard of care” means the best treatments known. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn if it is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Your doctor can help you consider all your treatment options. To learn more about clinical trials, see the About Clinical Trials and Latest Research sections…”

     ________________________________________________ 

     

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