Post surgerical follow up -- what now?

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4law
4law Member Posts: 110
edited March 2014 in Esophageal Cancer #1
Following radiation and chemo I had laproscopic surgery in March to remove tumor and a CT scan in June showed everything OK. I was told that there is no protocol of regular CT or PET scans for follow up, just to react if there are any symptoms (unlike rectal cancer, for example, where there are annual CT scans and colonoscopies and 5 year marks a discharge from care). This doesn't make sense to me -- does anyone know if there should be regular testing for a period of set period of time?

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  • paul61
    paul61 Member Posts: 1,391 Member
    #2
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    Follow up protocols
    Hello,

    I am not sure if I am a “typical” EC patient. I was diagnosed as Stage IIB (T2N1M0) and had Ivor Lewis surgery to remove the tumor and a number of lymph nodes around the tumor site. Since one of the nodes removed was positive for abnormal cells I had adjuvant chemotherapy following surgery.

    My oncologist and surgeon both have follow up protocols for periodic checkups. My surgeon suggests an endoscopy every six months to insure scar tissue does not form a “stricture” to impede swallowing and to insure that there are no abnormalities from a mechanical perspective in remnants of my esophagus and stomach.

    My oncologist suggests a CT scan every three months for the first two years and then every six months for the next two years to monitor for recurrence. Plus periodic blood tests to monitor for cancer related markers that may suggest activity.

    I am very surprised that your medical team does not recommend some follow up protocol. I would not be comfortable without one. From your post it looks like you had your radiation and chemotherapy prior to surgery. Perhaps you should re-contact your oncologist to discuss a follow up protocol. At a minimum; I would discuss this with your primary care physician.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 – Stage IIB
    12/03/2009 Ivor Lewis
    2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
  • Unknown
    Unknown
    #3
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    This comment has been removed by the Moderator
  • 4law
    4law Member Posts: 110
    #4
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    unknown said:

    This comment has been removed by the Moderator

    Paul & Sherri,
    Thanks for
    Paul & Sherri,
    Thanks for your feedback.
    I return to oncologist in Oct. hopefully to have port removed. At that time I will definitely insist on a more formal schedule for follow up.
  • sandy1943
    sandy1943 Member Posts: 824
    #5
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    I had surgery in May2008. I
    I had surgery in May2008. I saw my surgeon every 3 months for the first yr' and was given a barrium swallow---now it is every 6 mths. I see my gastrologists every 3 mths but I have had swallowing issues. My encologists was seeing me every 3 mths for bloodwork and ct scan. that has been moved to every 6 mths now. It will chage to once a yr.---Not sure when. I don't understand why the dr's aren't seeing you for follow ups. You need to question this.
  • crystalbay
    crystalbay Member Posts: 38
    #6
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    paul61 said:

    Follow up protocols
    Hello,

    I am not sure if I am a “typical” EC patient. I was diagnosed as Stage IIB (T2N1M0) and had Ivor Lewis surgery to remove the tumor and a number of lymph nodes around the tumor site. Since one of the nodes removed was positive for abnormal cells I had adjuvant chemotherapy following surgery.

    My oncologist and surgeon both have follow up protocols for periodic checkups. My surgeon suggests an endoscopy every six months to insure scar tissue does not form a “stricture” to impede swallowing and to insure that there are no abnormalities from a mechanical perspective in remnants of my esophagus and stomach.

    My oncologist suggests a CT scan every three months for the first two years and then every six months for the next two years to monitor for recurrence. Plus periodic blood tests to monitor for cancer related markers that may suggest activity.

    I am very surprised that your medical team does not recommend some follow up protocol. I would not be comfortable without one. From your post it looks like you had your radiation and chemotherapy prior to surgery. Perhaps you should re-contact your oncologist to discuss a follow up protocol. At a minimum; I would discuss this with your primary care physician.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 – Stage IIB
    12/03/2009 Ivor Lewis
    2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Confusion!
    Hi Paul,
    I just noticed that your DX was identical to mine, yet they said that I was Stage III. How
    can that be? I had chemo/radiation prior to the Ivor Lewis due to this. Also, my tumor was
    only 2 centimeters & the one hot node too small for the PET to pick up. Only an endoscopic
    ultra sound could stage my cancer.

    Any clue why I wouldn't be Stage IIb???

    Nancy
  • paul61
    paul61 Member Posts: 1,391 Member
    #7
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    crystalbay said:

    Confusion!
    Hi Paul,
    I just noticed that your DX was identical to mine, yet they said that I was Stage III. How
    can that be? I had chemo/radiation prior to the Ivor Lewis due to this. Also, my tumor was
    only 2 centimeters & the one hot node too small for the PET to pick up. Only an endoscopic
    ultra sound could stage my cancer.

    Any clue why I wouldn't be Stage IIb???

    Nancy

    Staging Guidelines
    Nancy,

    I am not sure why with the same TNM definition we would be defined as two different stages. I have included a reference to the staging guidelines for esophageal cancer below:
    Staging guidelines
    http://www.cancer.gov/cancertopics/pdq/treatment/esophageal/HealthProfessional/allpages/print#Section_12

    Stage IIB
    • T1, N1, M0
    • T2, N1, M0
    Stage III
    • T3, N1, M0
    • T4, any N, M0

    There have been some changes to the esophageal cancer guidelines in 2010 and that may account for the difference. But the guidelines above appear to be 2010 guidelines.

    Of course at the end of the day, the Stage we were when we went into treatment is not nearly as important as the results after treatment. We are all looking for NED after treatment and the more years we stay NED the better our chances of long term survival.

    I also left you a response under your “discouraged about using this site….” post. I hope you are receiving responses that are helpful now.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 – Stage IIB
    12/03/2009 Ivor Lewis
    2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
  • Donna70
    Donna70 Member Posts: 852 Member
    #8
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    sandy1943 said:

    I had surgery in May2008. I
    I had surgery in May2008. I saw my surgeon every 3 months for the first yr' and was given a barrium swallow---now it is every 6 mths. I see my gastrologists every 3 mths but I have had swallowing issues. My encologists was seeing me every 3 mths for bloodwork and ct scan. that has been moved to every 6 mths now. It will chage to once a yr.---Not sure when. I don't understand why the dr's aren't seeing you for follow ups. You need to question this.

    believe in follow ups
    Hi,
    I was a stage III T3N1MO and after chemo and radiation had IVor Lewis surgery and then had to have chemo for 1 bad lymph node that was found at surgery. My drs have me coming back every 3 months for a CAT scan, blood work etc and also see either my onc dr or my surgeon alternately. Now this will go on for a year. Any swallowing issues I have will be handled by my GI, have had one endoscopy since surgery. I firmly believe that you need your blood checked and CT scans on a regular basis. My drs only do a PET scan if the CT scan comes back with ?s because of all the false positives. So I hope you get a definite second opinion because it seems to me everyone here gets regular follow ups with CT and/or PET scans. Also, after surgery my onc dr told me I was now considered a Stage II. Good luck glad to have you on the board. take care, prayers always,
    Donna70
  • Unknown
    Unknown
    #9
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  • 4law
    4law Member Posts: 110
    #10
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    unknown said:

    This comment has been removed by the Moderator

    Wow! Thanks for taking the
    Wow! Thanks for taking the time for your thoughtful and thorough reply. I was told that my rectal cancer had absolutely nothihng to do with my esophageal cancer -- I guess I am just lucky and more susceptible to cancer. I am very satisfied with Dr. Scott -- he is skilled, and always takes all the time that is necessary to answer questions. I had similar symptoms re mucas in throat and when I had a dilation, I was told that there was only very minimal "stretching". I feel very lucky and except for minor problems with sleeping and getting used to changing my eating habits, I'm OK. My CT scan was good. I will follow up on everyone's suggestions -- I am hoping that I mis-understood what my oncologist told me about follow-up because if not, I am disappointed in her and will have a long talk with her about this. She didn't say there would be no follow-up, just that PET and CT scans were not anticipated as a part of the overall plan. I told her that if I was doing so good, I wanted the port out because that tells me that I am and will continue to be OK. Stay well.
  • oriontj
    oriontj Member Posts: 375
    #11
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    4law said:

    Wow! Thanks for taking the
    Wow! Thanks for taking the time for your thoughtful and thorough reply. I was told that my rectal cancer had absolutely nothihng to do with my esophageal cancer -- I guess I am just lucky and more susceptible to cancer. I am very satisfied with Dr. Scott -- he is skilled, and always takes all the time that is necessary to answer questions. I had similar symptoms re mucas in throat and when I had a dilation, I was told that there was only very minimal "stretching". I feel very lucky and except for minor problems with sleeping and getting used to changing my eating habits, I'm OK. My CT scan was good. I will follow up on everyone's suggestions -- I am hoping that I mis-understood what my oncologist told me about follow-up because if not, I am disappointed in her and will have a long talk with her about this. She didn't say there would be no follow-up, just that PET and CT scans were not anticipated as a part of the overall plan. I told her that if I was doing so good, I wanted the port out because that tells me that I am and will continue to be OK. Stay well.

    Dh is always scheduled for a check up
    His oncologist tells him when...after the treatment it was 3 months. then 5 months and then three months...proceeded by a CT scan and blood work...now it's 3 months...

    Just seems to me they would want to check...and I'm sure you do too.

    orion

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