New / 6 mo post diagnosis

Tggrtoes
Tggrtoes Member Posts: 3
in Esophageal Cancer #1

Hi everyone - first day here on this board, so I'll be reading through some historical posts, but wanted to introduce myself.  DH (41) diagnosed with T3 Esophogeal Cancer on September 23, 2016. He had rapid weight loss and at the end wasn't able to swallow water. Earlier symptoms were choking/gagging. He has had history of strong gag reflex his whole life, so we didn't think much of it, until it became so severe. He received a stent on 9/23 that dramatically changed his ability to eat and we started pursuing oncology options. Once weekly chemo and 6 weeks of daily radiation started October 6. He was such a trooper and worked throughout his treatment, despite having a physical labor job. PET Scan a month out indicated about 55% reduction in tumor "size". 

Esophogectomy was attempted January 4, but they found tumor was adhered to the bronchus, so they were unable to complete the procedure.  We did have esophogeal biopsies post-surgery and  they came back negative, but we know that means little given the biopsies show only a portion of the data. We have consulted several other docs (Mayo, etc.) and are with a new doctor currently who thought he could potentially do the surgery. Did bronchoscopy and endoscopy last week (and more biopsies), and he determined surgery was not an option given the melding of esophogus into the bronchus. We see him tomorrow for the next steps and results of those biopsies and our PET last week.

Recommended treatment seems to be brachytherapy given DH's difficulty swallowing (they did add stent back in last week). It does  not appear that this would be a curative approach, but would be keeping symptoms at bay for as long as possible.  It's possible that there could be further chemo to just be as aggressive as possible.  Our goal obviously is as long a life as possible, with as good a quality of life as possible.  My 9 year old son needs his daddy (not to mention that I need him too!).

Looking forward to getting to know ya'll!

Stacey

Comments

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    edited March 2017 #2
    Hello Stacey

    Hello Stacey,

    Sounds like you guys are running into some tough situations.  I was at a point where surgery and radiation weren't options for me because recurrent cancer had metastasized to a lung (I had had chemo/radiation, surgery  and more chemo previously).  I was completely overwhelmed and looked for another cancer center that could offer me something more aggressive than just chemo.  I went to a world class hospital and they told me that the course of treatment I was being prescribed was the best I could do.  I was quite dejected, because that course of treatment had a 7-8 month life expectancy.  Turns out that I was HER2+ and herceptin had just been approved for EC.  That was what made the difference for me.  I've been testing clean for almost five years now.  If this is a possible outcome for me, there's no reason why you guys can't find similar success.  Your path may not be herceptin, but hopefully, there's a path that gets you the same result.  

    Wishing you the best,

    Ed

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #3
    "Stacey"~Sorry 2 hear your story but happy 2 help if we can!

     Dear Stacey,

    Welcome!  Right off, your letter raises a lot of questions in my mind.  I’m truly sad to read about your husband’s cancer.  Your last words put it all in a nutshell.  You don’t want to lose your husband, and your young son certainly needs his father.  Your letter is a difficult one because the things you are telling us are just plain “disheartening.”    

    Just wondering what was the exact stage of your husband’s cancer.  You state that it was “T3” but there are variations of that stage.  For instance, my husband’s stage was “T3N1M0”.  The “T” stands for tumor.  “T3” meant that all four walls of his esophagus infiltrated with the cancer.  Cancer was also found in 2 lymph nodes local to the Esophagus.  The “M” was zero, meaning that there was no metastasis to another major organ or to lymph nodes near another major organ.  So I’m wondering if there was a “T3” diagnosis and a number following the “M”.  I’m curious to know why the scans didn’t pick up the area on the bronchi. Here is a link showing “staging of Esophageal Cancer.”

    1. http://www.cancer.net/cancer-types/esophageal-cancer/diagnosis

    2. http://www.cancer.net/cancer-types/esophageal-cancer/stages

    Now I knew that bronchi was a “lung” location.  Often people write in and their diagnosis is Esophageal Cancer Stage IV with metastasis to the Lung.  So I’m just wondering how the “original” PET scan, which shows live cancer activity in the body, did not detect this tumor involvement with the bronchi.  And if it did, would not the diagnosis been a Stage IV from the start?  And if that were the case, usually Stage IV EC patients receive palliative treatments that include radiation and chemotherapy, but not usually surgery.

    Then another question comes to mind.  You indicate that a PET scan showed a 55% reduction in tumor size a month out from treatments.  Are you telling us that not until “surgery” was attempted that the problem in the bronchi was found even though a PET scan was done prior to the attempted surgery?  When I look at this “body map” I can see that the bronchi and the Esophagus are “next door neighbors” so to speak.  Take a look at this map.  And I marvel at the intricacy with which God put our body together.  And I’m so glad He gave some physicians down here the ability to know how to “take it apart and put it back together again.”  So here is that link:  You can type in the any part of the body you wish, and that organ will come up.  You can move the bar at the bottom of the screen slowly and different angles will come into view.  You will see how “intertwined” the bronchi, the trachea and the Esophagus, and lungs are from different angles.  This will give you a better understanding of all the body parts that may be involved on your journey.

    3.  http://www.healthline.com/human-body-maps/male

    4.  http://www.healthline.com/human-body-maps/lung/male

    5.  http://www.healthline.com/human-body-maps/bronchi

    6.  http://www.healthline.com/human-body-maps/tracheal-cartilages

    7.  http://www.healthline.com/human-body-maps/esophagus/male

     What kind of surgery was attempted?  And who were the thoracic surgeons and where do they practice?  I’m just wondering exactly the chronological order of how things went down. 

    You say you’ve consulted “several other docs” including Mayo Clinic.  And may I add in that regard that different medical facilities rank differently for different cancers.  For instance, according to USNews & Health report, while Mayo Clinic in Rochester ranks #1 for Gastrointestinal cancers, another Mayo clinic in Phoenix does not enjoy the same rank.  Here is a listing for hospitals and their ranking for Gastrointestinal surgeries. 

    8. http://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

    Can you tell us who some of the doctors were?  Were they SECOND OPINION or THIRD OPINIONS?  Did they conduct any tests of their own, after reviewing the scans and reports of your husband’s initial Diagnosis?  Did they differ in any way?

    Here is another link that might help you when talking with doctors.  And please be “forward” and ask for explanations when you don’t understand completely what they are saying.  You know physicians talk a different language than we, and often throw out big words and never bother to elaborate on their meaning—that is unless we stop them.  I ask many questions and am not afraid to say, “Can you explain that more clearly—I’m not understanding what you’re saying.”  And fortunately for me, I have an oncologist who explains in detail things I ask about, and even draws out some illustrations.  He takes all the time I need, and treats me as if I were his only patient that day.  And yes, I’ve waited out in the office for half an hour or more, but I’ve never complained because I know he will take all the time I need when it’s my turn. 

    I don’t mean to confuse me, but my husband and I have the same oncologist.  My husband is now in his 14th year of survival for EC Stage III (T3N1M0) as I stated before.  I was diagnosed in November of 2012 with a terminal cancer.  I did have a SECOND opinion, as did my husband when he was being diagnosed.  And he did have the HER2 test but thankfully did NOT test positive for it.  So I’ve been on both ends of cancer, first as a caregiver and now as a Stage IV patient myself.  (Peritoneal Carcinomatosis/Ovarian Cancer Stage IV).  So I can identify with your anxieties completely.  It’s not a good place to be.  That’s why we always want to be certain that the “newbie” understands their diagnosis and their options.  We here are not doctors, but each brings a different perspective to the table although the primary diagnosis of Esophageal Cancer is what brings us all together. 

    I’m not disputing what you’re telling me, I’m just curious as to how so many “missed” the “melding” as you say of this tumor with the bronchi until your husband was on the operating table.  Now often traces of cancer are found during surgery that were not picked up on the scan, but especially after “viewing the body map” above, it just seems to me that the area on the bronchi should have shown up on a PET scan if the tumor on the Esophagus showed up.  My husband’s diagnosis was Adenocarcinoma at the Gastroesophageal (GE) junction.  Exactly how does your husband’s original diagnosis read?  How does it read now?   

    Now I’m not going to be able to add anything to what you’ve been told already, I’m just full of questions.  Each time a “newbie” comes on, I usually learn something new about how this cancer behaves that I didn’t know before.     

    When you say you consulted other doctors, did they conduct a test to see if your husband’s cancer involved the HER2+ factor?   Ed’s remarks here are very important and if no test was conducted for your husband to see if he is HER2 positive, that is something that should be requested right now.    Some cancer patients possess a gene that “over expresses” itself and reproduces more cancer at a faster rate.  Esophageal cancer patients should be tested because of the very situation that Ed encountered.  It has enabled him to live much longer than would most likely have been possible, were it not for this drug called HERCEPTIN.  It is not a chemotherapy drug, but is given in addition to any chemo that is prescribed.  And so I will give you the reference here for the letter I wrote to “jckWilliams.”

    Now, if you’re like me when I first learned that my husband had Stage III EC (T3N1M0) I couldn’t even spell Esophageal or endoscopy much less know anything about “HER2”.  For all I knew, they might as well said “HIM2” and I wouldn’t know the difference. Frown Since then I have come to know what it means, (human epidermal growth factor receptor 2), so rather than repeat all the links here, I will give you the link to my discussion with “jckWilliams” on March 7, 2017.  Here is that link.  In particular note references 4,5,6 and 7 underneath my name in that topic discussion to understand more fully the drug that Ed is taking that has helped him for so long even though his diagnosis is now Stage IV.    

    9.  http://csn.cancer.org/comment/1572707#comment-1572707

    Now Stacey, I’ve probably raised more questions than you would know to even think of, but I’ve been around a long time now.  And it’s my one desire that everyone understands what their cancer involves, and where to go to find the best treatment.  My own husband, William, went to the University of Pittsburgh Medical Center for his Ivor Lewis Minimally Invasive Esophagectomy in May of 2003.  His surgery was performed by Dr. James D. Luketich, world renowned Thoracic Surgeon who pioneered this totally laparoscopic Esophagectomy back in the 1990’s.  It is one of our main goals to inform all our friends that there is more than one type of surgery to remove a cancerous Esophagus.  This one, commonly called the MIE, has the quickest recovery (minus unforeseen complications of course) and that is what we want for everyone. 

    Okay Stacey, will go for now, but if you have specific questions that you think any of us can answer, please visit us anytime.  But here is a link to think about.  It will give you even more questions to ask your doctors and maybe even tomorrow, depending on how quickly you read this letter. 

    10.  http://news.cancerconnect.com/newly-diagnosed/questions-to-ask/

    Questions to Ask - Questions to Ask Your Doctor about Cancer Treatment

    And I see that you speak correct English when you include the word “ya’ll”.  It’s a common word—one we use all the time.  It actually means “you all” and that can include just a couple of folks, or a group, or a multitude.  We southerners pride ourselves on our accent and our vocabulary you know.  I’m not from the Deep South, but when we went to Pittsburgh, they were amused by our accent.  We are proud Southerners.  But if we think the best surgeon is “up North” we won’t hesitate to go there. 

    Here’s hoping and praying that you will be able to find the very best path to follow in the future to help your husband.  He needs the love and encouragement of both you and your young son.  Ya’ll all need each other!  We all need each other. 

    Love & prayers,

    Loretta

    P.S.  Who will make the final decisions on the brachytherapy treatment? Here are some links for that treatment.  I’ve had gold seeds placed around 3 tumors on the Caudate Lobe of my liver, and then a series of treatments of targeted radiation.  And the radiation totally eliminated the tumors!  It would be wonderful and miraculous if your husband could have the same good results.  We can hope for that.

    11.  https://www.cancer.gov/publications/patient-education/brachytherapy.pdf

    12.  http://www.upmc.com/patients-visitors/education/cancer-radiation/Pages/ldr-brachytherapy.aspx

    13.  http://www.mayoclinic.org/tests-procedures/brachytherapy/basics/definition/prc-20021316

    _________________End of references____________

  • Tggrtoes
    Tggrtoes Member Posts: 3
    #4
    Deathorglory said:

    Hello Stacey

    Hello Stacey,

    Sounds like you guys are running into some tough situations.  I was at a point where surgery and radiation weren't options for me because recurrent cancer had metastasized to a lung (I had had chemo/radiation, surgery  and more chemo previously).  I was completely overwhelmed and looked for another cancer center that could offer me something more aggressive than just chemo.  I went to a world class hospital and they told me that the course of treatment I was being prescribed was the best I could do.  I was quite dejected, because that course of treatment had a 7-8 month life expectancy.  Turns out that I was HER2+ and herceptin had just been approved for EC.  That was what made the difference for me.  I've been testing clean for almost five years now.  If this is a possible outcome for me, there's no reason why you guys can't find similar success.  Your path may not be herceptin, but hopefully, there's a path that gets you the same result.  

    Wishing you the best,

    Ed

    Thanks, Ed... in reading some

    Thanks, Ed... in reading some of the posts, your story stood out since you were also very young when diagnosed.  I am definitely going to be looking into the Her2+ as I am not sure if we were tested for that or not. (have not heard of it, so guessing not) Granted... we are still healing from surgery, so we are only just now beginning more testing/pursuing other treatment.  Thanks!

  • Tggrtoes
    Tggrtoes Member Posts: 3
    #5
    LorettaMarshall said:

    "Stacey"~Sorry 2 hear your story but happy 2 help if we can!

     Dear Stacey,

    Welcome!  Right off, your letter raises a lot of questions in my mind.  I’m truly sad to read about your husband’s cancer.  Your last words put it all in a nutshell.  You don’t want to lose your husband, and your young son certainly needs his father.  Your letter is a difficult one because the things you are telling us are just plain “disheartening.”    

    Just wondering what was the exact stage of your husband’s cancer.  You state that it was “T3” but there are variations of that stage.  For instance, my husband’s stage was “T3N1M0”.  The “T” stands for tumor.  “T3” meant that all four walls of his esophagus infiltrated with the cancer.  Cancer was also found in 2 lymph nodes local to the Esophagus.  The “M” was zero, meaning that there was no metastasis to another major organ or to lymph nodes near another major organ.  So I’m wondering if there was a “T3” diagnosis and a number following the “M”.  I’m curious to know why the scans didn’t pick up the area on the bronchi. Here is a link showing “staging of Esophageal Cancer.”

    1. http://www.cancer.net/cancer-types/esophageal-cancer/diagnosis

    2. http://www.cancer.net/cancer-types/esophageal-cancer/stages

    Now I knew that bronchi was a “lung” location.  Often people write in and their diagnosis is Esophageal Cancer Stage IV with metastasis to the Lung.  So I’m just wondering how the “original” PET scan, which shows live cancer activity in the body, did not detect this tumor involvement with the bronchi.  And if it did, would not the diagnosis been a Stage IV from the start?  And if that were the case, usually Stage IV EC patients receive palliative treatments that include radiation and chemotherapy, but not usually surgery.

    Then another question comes to mind.  You indicate that a PET scan showed a 55% reduction in tumor size a month out from treatments.  Are you telling us that not until “surgery” was attempted that the problem in the bronchi was found even though a PET scan was done prior to the attempted surgery?  When I look at this “body map” I can see that the bronchi and the Esophagus are “next door neighbors” so to speak.  Take a look at this map.  And I marvel at the intricacy with which God put our body together.  And I’m so glad He gave some physicians down here the ability to know how to “take it apart and put it back together again.”  So here is that link:  You can type in the any part of the body you wish, and that organ will come up.  You can move the bar at the bottom of the screen slowly and different angles will come into view.  You will see how “intertwined” the bronchi, the trachea and the Esophagus, and lungs are from different angles.  This will give you a better understanding of all the body parts that may be involved on your journey.

    3.  http://www.healthline.com/human-body-maps/male

    4.  http://www.healthline.com/human-body-maps/lung/male

    5.  http://www.healthline.com/human-body-maps/bronchi

    6.  http://www.healthline.com/human-body-maps/tracheal-cartilages

    7.  http://www.healthline.com/human-body-maps/esophagus/male

     What kind of surgery was attempted?  And who were the thoracic surgeons and where do they practice?  I’m just wondering exactly the chronological order of how things went down. 

    You say you’ve consulted “several other docs” including Mayo Clinic.  And may I add in that regard that different medical facilities rank differently for different cancers.  For instance, according to USNews & Health report, while Mayo Clinic in Rochester ranks #1 for Gastrointestinal cancers, another Mayo clinic in Phoenix does not enjoy the same rank.  Here is a listing for hospitals and their ranking for Gastrointestinal surgeries. 

    8. http://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

    Can you tell us who some of the doctors were?  Were they SECOND OPINION or THIRD OPINIONS?  Did they conduct any tests of their own, after reviewing the scans and reports of your husband’s initial Diagnosis?  Did they differ in any way?

    Here is another link that might help you when talking with doctors.  And please be “forward” and ask for explanations when you don’t understand completely what they are saying.  You know physicians talk a different language than we, and often throw out big words and never bother to elaborate on their meaning—that is unless we stop them.  I ask many questions and am not afraid to say, “Can you explain that more clearly—I’m not understanding what you’re saying.”  And fortunately for me, I have an oncologist who explains in detail things I ask about, and even draws out some illustrations.  He takes all the time I need, and treats me as if I were his only patient that day.  And yes, I’ve waited out in the office for half an hour or more, but I’ve never complained because I know he will take all the time I need when it’s my turn. 

    I don’t mean to confuse me, but my husband and I have the same oncologist.  My husband is now in his 14th year of survival for EC Stage III (T3N1M0) as I stated before.  I was diagnosed in November of 2012 with a terminal cancer.  I did have a SECOND opinion, as did my husband when he was being diagnosed.  And he did have the HER2 test but thankfully did NOT test positive for it.  So I’ve been on both ends of cancer, first as a caregiver and now as a Stage IV patient myself.  (Peritoneal Carcinomatosis/Ovarian Cancer Stage IV).  So I can identify with your anxieties completely.  It’s not a good place to be.  That’s why we always want to be certain that the “newbie” understands their diagnosis and their options.  We here are not doctors, but each brings a different perspective to the table although the primary diagnosis of Esophageal Cancer is what brings us all together. 

    I’m not disputing what you’re telling me, I’m just curious as to how so many “missed” the “melding” as you say of this tumor with the bronchi until your husband was on the operating table.  Now often traces of cancer are found during surgery that were not picked up on the scan, but especially after “viewing the body map” above, it just seems to me that the area on the bronchi should have shown up on a PET scan if the tumor on the Esophagus showed up.  My husband’s diagnosis was Adenocarcinoma at the Gastroesophageal (GE) junction.  Exactly how does your husband’s original diagnosis read?  How does it read now?   

    Now I’m not going to be able to add anything to what you’ve been told already, I’m just full of questions.  Each time a “newbie” comes on, I usually learn something new about how this cancer behaves that I didn’t know before.     

    When you say you consulted other doctors, did they conduct a test to see if your husband’s cancer involved the HER2+ factor?   Ed’s remarks here are very important and if no test was conducted for your husband to see if he is HER2 positive, that is something that should be requested right now.    Some cancer patients possess a gene that “over expresses” itself and reproduces more cancer at a faster rate.  Esophageal cancer patients should be tested because of the very situation that Ed encountered.  It has enabled him to live much longer than would most likely have been possible, were it not for this drug called HERCEPTIN.  It is not a chemotherapy drug, but is given in addition to any chemo that is prescribed.  And so I will give you the reference here for the letter I wrote to “jckWilliams.”

    Now, if you’re like me when I first learned that my husband had Stage III EC (T3N1M0) I couldn’t even spell Esophageal or endoscopy much less know anything about “HER2”.  For all I knew, they might as well said “HIM2” and I wouldn’t know the difference. Frown Since then I have come to know what it means, (human epidermal growth factor receptor 2), so rather than repeat all the links here, I will give you the link to my discussion with “jckWilliams” on March 7, 2017.  Here is that link.  In particular note references 4,5,6 and 7 underneath my name in that topic discussion to understand more fully the drug that Ed is taking that has helped him for so long even though his diagnosis is now Stage IV.    

    9.  http://csn.cancer.org/comment/1572707#comment-1572707

    Now Stacey, I’ve probably raised more questions than you would know to even think of, but I’ve been around a long time now.  And it’s my one desire that everyone understands what their cancer involves, and where to go to find the best treatment.  My own husband, William, went to the University of Pittsburgh Medical Center for his Ivor Lewis Minimally Invasive Esophagectomy in May of 2003.  His surgery was performed by Dr. James D. Luketich, world renowned Thoracic Surgeon who pioneered this totally laparoscopic Esophagectomy back in the 1990’s.  It is one of our main goals to inform all our friends that there is more than one type of surgery to remove a cancerous Esophagus.  This one, commonly called the MIE, has the quickest recovery (minus unforeseen complications of course) and that is what we want for everyone. 

    Okay Stacey, will go for now, but if you have specific questions that you think any of us can answer, please visit us anytime.  But here is a link to think about.  It will give you even more questions to ask your doctors and maybe even tomorrow, depending on how quickly you read this letter. 

    10.  http://news.cancerconnect.com/newly-diagnosed/questions-to-ask/

    Questions to Ask - Questions to Ask Your Doctor about Cancer Treatment

    And I see that you speak correct English when you include the word “ya’ll”.  It’s a common word—one we use all the time.  It actually means “you all” and that can include just a couple of folks, or a group, or a multitude.  We southerners pride ourselves on our accent and our vocabulary you know.  I’m not from the Deep South, but when we went to Pittsburgh, they were amused by our accent.  We are proud Southerners.  But if we think the best surgeon is “up North” we won’t hesitate to go there. 

    Here’s hoping and praying that you will be able to find the very best path to follow in the future to help your husband.  He needs the love and encouragement of both you and your young son.  Ya’ll all need each other!  We all need each other. 

    Love & prayers,

    Loretta

    P.S.  Who will make the final decisions on the brachytherapy treatment? Here are some links for that treatment.  I’ve had gold seeds placed around 3 tumors on the Caudate Lobe of my liver, and then a series of treatments of targeted radiation.  And the radiation totally eliminated the tumors!  It would be wonderful and miraculous if your husband could have the same good results.  We can hope for that.

    11.  https://www.cancer.gov/publications/patient-education/brachytherapy.pdf

    12.  http://www.upmc.com/patients-visitors/education/cancer-radiation/Pages/ldr-brachytherapy.aspx

    13.  http://www.mayoclinic.org/tests-procedures/brachytherapy/basics/definition/prc-20021316

    _________________End of references____________

    Loretta - I laughed out loud

    Loretta - I laughed out loud at your ya'll comment. I grew up in Florida and spent a significant amount of time in Georgia, so while I have minimal accent, I take my ya'lls very seriously.  Laughing

    Thank you for the brachytherapy reading material. I saved them to my hard drive and will read tomorrow.  I have read quite a few journals that I found online, but I most certainly want to read as much as I can.

    Let me see if I can answer a few questions... we have visited all the major hospitals in Phoenix... Banner Dessert (would not touch them again with a 10 foot pole) and Banner Good Samaritan, Mayo, Honor Heath (formerly Scottsdale health - Scottsdale Shea and Osborn), and now are seeing docs at University of Arizona Cancer Center at St. Joseph's Hospital (Dignity Health)  and the Norton Thoracic Institute, while also still seeing some original docs in the Honor Health network. We did not pursue Cancer Treatment Centers of America given some information we have received on standard of care changes.

    As for the PET and the bronchus, it was too small to be seen on a PET, but they are still not sure if it's result of radiation - "melding" (my word) - or if it's tumor. Repeat PET will likely provide more information after inflamation and the radiation reaction is reduced (so as not to adversely impact PET results).

    We are seeing the brachytherapy doc tomorrow for consult, and then going to tumor board on Thursday. Hope to have a suggested plan of attack next week... may include maintenance chemo as well.  Hubby also has a large hiatal hernia that is causing some significant issues so we may also have to go in and get that repaired in the coming weeks/months.

    His weight is stabalized (150 pounds, so thin but healthy as he's only 5'9"), and he's most often using his G-tube for night feedings (3-4 cans/night) and then eating small amount of food during day. Swallowing has gotten better since stent put back in, although the gastric issues from the hernia continue to cause some problems.

    Will continue to check in after we get further info as well as the HEP2 gene results (not looking at my notes, so I may be saying that wrong). 

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