Newly diagnosed -- no dysphagia?

AC1973
AC1973 Member Posts: 5
in Esophageal Cancer #1

Hi there,

Coming here in some level of shock to learn that my otherwise healthy father has esophageal cancer.  We are awaiting final pathology results to determine the type and he has a CT scan on Monday. He has been having heartburn-like pain that comes and goes for a couple of months now... and his doctor ordered an Upper GI to rule out an ulcer. That's whey they found this. 

I guess, like many in my position, I'm looking for some reassurance or really just any context. He has had NO trouble swallowing and in fact, says he feels fine except for the heartburn. I'm hoping that means it was caught early? 

Anyone diagnosed without that common trouble swallowing?  Honestly, I feel so rudderless right now.  Thanks for any information or experiences on what I might expect in the early stages of exploring what's going on. They have him going for a CT scan of chest, abdomen and pelvis.  Should we be proactivelty asking for a PET scan? Or will the CT scan (with contrast) show anything they need?  Doctor said based on the results of that, they would potentially order an ultrasound endoscopy? Does this sound right?

 

THANK YOU and well wishes to all. 

Comments

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #2
    Hello

    Hello,

    I had heartburn/reflux for decades before I had trouble swallowing and was diagnosed with stage III EC.  It was actually the reflux that caused my cancer.  An endoscopic ultrasound is the right test for diagnosing/staging the cancer.  At this point, there doesn't seem to be a reason for concern about your father being stage IV, so a CT scan will pick up what they need easily enough.  I've been through the wringer with EC.  First time I was stage III, second and third go arounds were stage IV.  The single most important piece of advice I can give you is to go to a good hospital with good doctors.  This isn't a sprained ankle that can be handled at the ER down the street.  50% of doctors and hospitals are below average.  Make sure your father goes to the other half.  I live in the Philly are, so I'm fortunate to have several top flight cancer centers to choose from.  You might not be as fortunate, but even a fairly long commute is better than being seen by below average folks.  

    Best Wishes,

    Ed

  • AC1973
    AC1973 Member Posts: 5
    edited September 2020 #3
    Deathorglory said:

    Hello

    Hello,

    I had heartburn/reflux for decades before I had trouble swallowing and was diagnosed with stage III EC.  It was actually the reflux that caused my cancer.  An endoscopic ultrasound is the right test for diagnosing/staging the cancer.  At this point, there doesn't seem to be a reason for concern about your father being stage IV, so a CT scan will pick up what they need easily enough.  I've been through the wringer with EC.  First time I was stage III, second and third go arounds were stage IV.  The single most important piece of advice I can give you is to go to a good hospital with good doctors.  This isn't a sprained ankle that can be handled at the ER down the street.  50% of doctors and hospitals are below average.  Make sure your father goes to the other half.  I live in the Philly are, so I'm fortunate to have several top flight cancer centers to choose from.  You might not be as fortunate, but even a fairly long commute is better than being seen by below average folks.  

    Best Wishes,

    Ed

    Ed, Thank you. We are in CT

    Ed, Thank you. We are in CT and nearby to Yale, so I do know we will be able to find excellent care.

    My father had very bad reflux many years ago; but it has been seemingly well controlled for years with omeprezole. It was only in June that he said the heartburn came back and it was coming and going -- some days, nothing; other times, bad. Because he was already on a PPI, doctor decided the endoscopy was prudent and found an "ulceration" that looked suspicious, so he biopsied it. He still insists he is having no trouble swallowing.  I am hoping that means an early stage; but I am so out of my element here... thank you for responding to me and for sharing your insight. 

     

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #4
    AC1973 said:

    Ed, Thank you. We are in CT

    Ed, Thank you. We are in CT and nearby to Yale, so I do know we will be able to find excellent care.

    My father had very bad reflux many years ago; but it has been seemingly well controlled for years with omeprezole. It was only in June that he said the heartburn came back and it was coming and going -- some days, nothing; other times, bad. Because he was already on a PPI, doctor decided the endoscopy was prudent and found an "ulceration" that looked suspicious, so he biopsied it. He still insists he is having no trouble swallowing.  I am hoping that means an early stage; but I am so out of my element here... thank you for responding to me and for sharing your insight. 

     

    Hello

    I am not a medical professional, so take what I say with a grain of salt. My understanding is that EC is so fatal because it doesn't usually get diagnosed until advanced stages.  Dysphagia is generally stage III or later, so I'm rooting for you guys to be in the early stages.  Survival rates are much better in stages I & II.  

    I'm rooting for you guys,

    Ed

  • paul61
    paul61 Member Posts: 1,391 Member
    edited September 2020 #5
    AC1973 said:

    Ed, Thank you. We are in CT

    Ed, Thank you. We are in CT and nearby to Yale, so I do know we will be able to find excellent care.

    My father had very bad reflux many years ago; but it has been seemingly well controlled for years with omeprezole. It was only in June that he said the heartburn came back and it was coming and going -- some days, nothing; other times, bad. Because he was already on a PPI, doctor decided the endoscopy was prudent and found an "ulceration" that looked suspicious, so he biopsied it. He still insists he is having no trouble swallowing.  I am hoping that means an early stage; but I am so out of my element here... thank you for responding to me and for sharing your insight. 

     

    I was diagnosed without

    I was diagnosed without trouble swallowing. I had ongoing heart burn and reflux for years and had been dealing with it using Tums and various other antacids. I went to my PCP hoping to get a prescription for Omeprazole. He said, "Just as a precaution, let's get an endoscopy to check on what is going on". That "precaution" saved my life. I was diagnosed with Stage 2B adenocarcinoma of the esophagus. 

    As Ed stated above, your dad should be getting an endoscopic ultrasound and a CT scan with contrast to define staging. Once staging is complete, they may decide to do a PET scan, based on the depth the tumor has penetrated into the various layers of his esophagus. CT scans are good at imaging changes in the body structure (e.g. a tumor), whereas PET scans are used to evaluate metabolic activity and are more focused at identifying metastasis of cancer cells. I also agree with Ed’s comment that this is something you want evaluated at a major cancer center not your local hospital. Esophageal Cancer is relatively rare and not a lot of oncologists and surgeons are aware of the latest diagnostic and treatment protocols.

    Best Regards,

     

    Paul 

  • AC1973
    AC1973 Member Posts: 5
    edited September 2020 #6
    A quick update

    I wanted to thank you all for responding to my panicked email.  It truly helped.  

    We got the call today that my father's CT scan was "so far, all good"; so we are feeling a little hopeful since I assume significant metastasis would have shown up. Would a CT scan also show lymph nodes?

    We have an appointment in 2 weeks for an endoscopic ultrasound at Yale, where I assume we will learn more; and will that doctor said he will be referring us to his colleagues who will guide the treatment plan. Does this sound like the right chain of events?  Or would an oncologist usually already be involved? Feeling out of our element here.  THANKS again!

  • paul61
    paul61 Member Posts: 1,391 Member
    edited October 2020 #7
    That sounds like the right sequence

    I assume an "all good" CT scan result indicates there was no sign of metastisis in other major organs or lympth nodes. The endoscopic ultrasound will be used to determine the depth the tumor has penetrated into his esophagus and will also image the lympth nodes adjacent to the esophagus. This will allow them to complete "staging" and once a stage has been assigned your assigned oncology team will define a treatment plan. So things are headed in the correct direction.

    Regards,

    Paul

  • AC1973
    AC1973 Member Posts: 5
    edited October 2020 #8
    paul61 said:

    That sounds like the right sequence

    I assume an "all good" CT scan result indicates there was no sign of metastisis in other major organs or lympth nodes. The endoscopic ultrasound will be used to determine the depth the tumor has penetrated into his esophagus and will also image the lympth nodes adjacent to the esophagus. This will allow them to complete "staging" and once a stage has been assigned your assigned oncology team will define a treatment plan. So things are headed in the correct direction.

    Regards,

    Paul

    Thank you Paul. Helps to know

    Thank you Paul. Helps to know what to expect.

  • AC1973
    AC1973 Member Posts: 5
    edited October 2020 #9
    paul61 said:

    That sounds like the right sequence

    I assume an "all good" CT scan result indicates there was no sign of metastisis in other major organs or lympth nodes. The endoscopic ultrasound will be used to determine the depth the tumor has penetrated into his esophagus and will also image the lympth nodes adjacent to the esophagus. This will allow them to complete "staging" and once a stage has been assigned your assigned oncology team will define a treatment plan. So things are headed in the correct direction.

    Regards,

    Paul

    Thank you Paul. Helps to know

    Thank you Paul. Helps to know what to expect.

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