Post surgey follow up plans?

Joel C
Joel C Member Posts: 174
in Esophageal Cancer #1
Hello,

Today I had my first 5 month post-op CT scan. My MIE surgery for stage 2B (T2N1M0) was done on 11/18/2010, post-surgery pathology was clean. Today’s CT scan was also clean (thank god). I did find it interesting that today’s CT scan was without contrast. I would have thought that a scan with contrast would give the best results. I met with my surgeon after the scan and he said this is the normal procedure. The plan going forward is a scan every four months for 2 years, scan every six months for 2 – 5 years and then one scan a year out past 5 years. I certainly trust my surgeon’s plan going forward but would be interested in hearing what other people have for follow up plans.
Thank you,
Joel

Comments

  • BMGky
    BMGky Member Posts: 621
    #2
    HUSBAND'S SURGERY A YEAR AGO
    He has had a CT scan, then about 6 months later a PET scan and then about 4 to 6 months later a scope. All are coming back NED for which we are humbly thankful. From what I understand, we see our oncologist in about 3 months, have lab work, and then he'll schedule whichever scan is next. Glad your results were great. It is good they follow closely as EC is just not nice. However, there are many on this discussion board that are getting some years post op on them and continuing with clear scans. Their success gives us all hope.
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • sandy1943
    sandy1943 Member Posts: 824
    #4
    Joel, Congratulations on the
    Joel, Congratulations on the test results!
    The first two years, I had blood work, a ct scan w. contrast every three months.I also had a barrium swallow and chest x-ray on the same schdule. This all is on a six month scedule now, except for the blood work. It is still three months.
    Sandra
  • linda1120
    linda1120 Member Posts: 389
    #5
    Congratulations!
    Joel, so happy to hear your great scan results. My husband is a stage III survivor and had surgery January 5th of this year. He just had his first catscan with contrast at three months and there was no evidence of disease! Many more to both of you.

    Linda
  • Joel C
    Joel C Member Posts: 174
    #6
    linda1120 said:

    Congratulations!
    Joel, so happy to hear your great scan results. My husband is a stage III survivor and had surgery January 5th of this year. He just had his first catscan with contrast at three months and there was no evidence of disease! Many more to both of you.

    Linda

    Definitely not comfortable yet
    Thank you guys for the kind words about my first clean post-op scan, I really appreciate it. I’m also so very happy that all are you are doing well. And William thank you for going the extra mile and pulling up all the information on CT contrast.

    I’m going to keep digging and find out why no contrast was used. My follow up care is performed by my surgeon. I have an appointment with my oncologist in two weeks and I’ll let him know I’m uncomfortable with the way the CT scan was done and ask if he feels addition monitoring needs to be done. I do find it disturbing that people on the board are receiving PET/CT scans and scopes and I only receive a CT scan with no contrast. It could be that a CT scan without contrast is adequate but I’m not convinced and don’t want to see the ball dropped after going this far. I have to say this is the first time in my diagnostic and treatment process that I have not felt good about the decisions being made.

    William, you asked if I questioned the surgeon on why no contrast, I actually asked the question three times during my follow up visit.

    1) When I walked in to the CT room and the tech said jump up on the table my jaw almost hit the floor. I asked him about contrast and he said sometimes I do the test with and sometimes without, it depends what the doctor orders. He obviously just follows orders.

    2) Before I meet the surgeon I meet with one of the fellows at the clinic. When I asked him he said he wasn’t sure and that would be a good question for the surgeon, he did look pretty surprised though. He was obviously not going to second guess his boss.

    3) When I finally met with the surgeon his answer was “it’s the standard follow up procedure”. I know what you’re thinking and I agree that is not an answer. But I figured before I pushed the issue I should do my homework. After all I’m no expert. And you know how some of these doctors can be when you question their decisions (fine line between confidence and arrogance) but it’s my life and I’m going to make sure I’m comfortable with my treatment.

    Thanks again everyone and continue to be well.
    Joel
  • Joel C
    Joel C Member Posts: 174
    #7
    Joel C said:

    Definitely not comfortable yet
    Thank you guys for the kind words about my first clean post-op scan, I really appreciate it. I’m also so very happy that all are you are doing well. And William thank you for going the extra mile and pulling up all the information on CT contrast.

    I’m going to keep digging and find out why no contrast was used. My follow up care is performed by my surgeon. I have an appointment with my oncologist in two weeks and I’ll let him know I’m uncomfortable with the way the CT scan was done and ask if he feels addition monitoring needs to be done. I do find it disturbing that people on the board are receiving PET/CT scans and scopes and I only receive a CT scan with no contrast. It could be that a CT scan without contrast is adequate but I’m not convinced and don’t want to see the ball dropped after going this far. I have to say this is the first time in my diagnostic and treatment process that I have not felt good about the decisions being made.

    William, you asked if I questioned the surgeon on why no contrast, I actually asked the question three times during my follow up visit.

    1) When I walked in to the CT room and the tech said jump up on the table my jaw almost hit the floor. I asked him about contrast and he said sometimes I do the test with and sometimes without, it depends what the doctor orders. He obviously just follows orders.

    2) Before I meet the surgeon I meet with one of the fellows at the clinic. When I asked him he said he wasn’t sure and that would be a good question for the surgeon, he did look pretty surprised though. He was obviously not going to second guess his boss.

    3) When I finally met with the surgeon his answer was “it’s the standard follow up procedure”. I know what you’re thinking and I agree that is not an answer. But I figured before I pushed the issue I should do my homework. After all I’m no expert. And you know how some of these doctors can be when you question their decisions (fine line between confidence and arrogance) but it’s my life and I’m going to make sure I’m comfortable with my treatment.

    Thanks again everyone and continue to be well.
    Joel

    Now I’m beyond uncomfortable
    Hello again,
    I ended up talking with a family friend that is a radiologist at the same hospital that I had my surgery at. To say she was surprised a cancer patient would have a follow up CT scan with no contrast is an understatement. In her opinion detecting reoccurrence or metastatic disease would be virtually impossible without the contrast. I talked to two friends that had the same surgery as me also at Brigham and Women’s. They both had different surgeons than me. Both of them always receive contrast with their follow up CT scans. I also called my brother-in-law who is a doctor that specializes in internal medicine. He also said he has never heard of such a thing. I don’t know what to do about my surgeon as I have already voiced my concern with him and his reply was “this is the standard procedure”. I think I should call my oncologist and let him know what’s going on but it is the surgeon that is supposed to be managing my follow up care. I really don’t know what I should do, I’m literally sick over this.
    Joel
  • paul61
    paul61 Member Posts: 1,392 Member
    #8
    Joel C said:

    Now I’m beyond uncomfortable
    Hello again,
    I ended up talking with a family friend that is a radiologist at the same hospital that I had my surgery at. To say she was surprised a cancer patient would have a follow up CT scan with no contrast is an understatement. In her opinion detecting reoccurrence or metastatic disease would be virtually impossible without the contrast. I talked to two friends that had the same surgery as me also at Brigham and Women’s. They both had different surgeons than me. Both of them always receive contrast with their follow up CT scans. I also called my brother-in-law who is a doctor that specializes in internal medicine. He also said he has never heard of such a thing. I don’t know what to do about my surgeon as I have already voiced my concern with him and his reply was “this is the standard procedure”. I think I should call my oncologist and let him know what’s going on but it is the surgeon that is supposed to be managing my follow up care. I really don’t know what I should do, I’m literally sick over this.
    Joel

    I would have your oncologist order the scan
    Joel,

    I would think your surgeon is responsible for insuring you recovery physically from the affects of the surgical procedure on your body. I would think your oncologist is responsible for follow up to identify any systemic recurrence of cancer in your body.

    However; you are responsible for your medical care and evaluating the ADVICE of the medical professionals you employ. If you are not comfortable with your surgeon's approach;(and I would certainly be uncomfortable as well.) I think you should discuss your concerns with your oncologist and request he order the scan repeated with contrast.

    My follow up scans have always been done with contrast. I am not a medical professional and this is just based on my personal experience but you certainly have input from enough medical professionals to justify your concerns.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
    3/14/2011 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Unknown
    Unknown
    #9
    Joel C said:

    Now I’m beyond uncomfortable
    Hello again,
    I ended up talking with a family friend that is a radiologist at the same hospital that I had my surgery at. To say she was surprised a cancer patient would have a follow up CT scan with no contrast is an understatement. In her opinion detecting reoccurrence or metastatic disease would be virtually impossible without the contrast. I talked to two friends that had the same surgery as me also at Brigham and Women’s. They both had different surgeons than me. Both of them always receive contrast with their follow up CT scans. I also called my brother-in-law who is a doctor that specializes in internal medicine. He also said he has never heard of such a thing. I don’t know what to do about my surgeon as I have already voiced my concern with him and his reply was “this is the standard procedure”. I think I should call my oncologist and let him know what’s going on but it is the surgeon that is supposed to be managing my follow up care. I really don’t know what I should do, I’m literally sick over this.
    Joel

    This comment has been removed by the Moderator
  • Donna70
    Donna70 Member Posts: 852 Member
    #10
    unknown said:

    This comment has been removed by the Moderator

    Joel, my oncologist writes the orders for the scans
    As others have pointed out they get CT scans with contrast and many are written by the oncologists. My drs do not do PET/CT scans they do the CT scans with contrast and if anything is seen out of the ordinary, then the PET scan is ordered. You have to be your own advocate and I am glad you looked into it. Hoping they will do the next scan with contrast, take care,
    Donna70
  • Bobs1wife
    Bobs1wife Member Posts: 150
    #11
    CT Scans
    Hi Joel, Our oncologist is also the one who orders my husband's CT's with contrast. I was always concerned thinking he should be having a PET/CT scan. One issue is that if you have private insurance through BCBS they will only cover one PET scan per year. They will cover the CT's at regular intervals. We were told by our surgeon that the CT scan is actually their preferred test for follow up anyway, so it made me feel better that my husband was getting scans that were the right ones. I agree with your concern, but maybe by talking with your oncologist you will get some answers and get the scans with contrast. Linda
  • Joel C
    Joel C Member Posts: 174
    #12
    Bobs1wife said:

    CT Scans
    Hi Joel, Our oncologist is also the one who orders my husband's CT's with contrast. I was always concerned thinking he should be having a PET/CT scan. One issue is that if you have private insurance through BCBS they will only cover one PET scan per year. They will cover the CT's at regular intervals. We were told by our surgeon that the CT scan is actually their preferred test for follow up anyway, so it made me feel better that my husband was getting scans that were the right ones. I agree with your concern, but maybe by talking with your oncologist you will get some answers and get the scans with contrast. Linda

    Thank you everyone for all
    Thank you everyone for all the information.

    My surgeon at Brigham and Women’s that ordered the CT scan without contrast, also has me scheduled for another CT scan in August and again without contrast. I would like to continue my follow ups at the place I had the surgery as it would make sense that they would have the most experience with EC monitoring. It seems inconceivable to me the surgeon does not understand the value of using contrast. I talked to him today and again he said he feels a CT scan with no contrast is adequate for follow up. As I mentioned before my radiologist friend that works in the same hospital was shocked to hear how the test was done especially knowing it was for a cancer patient. I called my medical oncologist and he said he would be happy to take care of future scans and he would never order one without contrast. With that said if my surgeon is not willing to do future scans with contrast I will be forced to “move on” as William said and have my oncologist take over my future monitoring.

    For the people that have their follow up monitoring done by their oncologist, do you still have visits with your surgeon? If I move my monitoring over to my oncologist then I guess there will little value in continuing to meet with the surgeon.
    Thank again,
    Joel
  • paul61
    paul61 Member Posts: 1,392 Member
    #13
    Joel C said:

    Thank you everyone for all
    Thank you everyone for all the information.

    My surgeon at Brigham and Women’s that ordered the CT scan without contrast, also has me scheduled for another CT scan in August and again without contrast. I would like to continue my follow ups at the place I had the surgery as it would make sense that they would have the most experience with EC monitoring. It seems inconceivable to me the surgeon does not understand the value of using contrast. I talked to him today and again he said he feels a CT scan with no contrast is adequate for follow up. As I mentioned before my radiologist friend that works in the same hospital was shocked to hear how the test was done especially knowing it was for a cancer patient. I called my medical oncologist and he said he would be happy to take care of future scans and he would never order one without contrast. With that said if my surgeon is not willing to do future scans with contrast I will be forced to “move on” as William said and have my oncologist take over my future monitoring.

    For the people that have their follow up monitoring done by their oncologist, do you still have visits with your surgeon? If I move my monitoring over to my oncologist then I guess there will little value in continuing to meet with the surgeon.
    Thank again,
    Joel

    I no longer see my surgeon for follow up
    Joel,

    My follow up monitoring is done by my oncologist.

    I saw my surgeon for about six months after my surgery then switched to having my monitoring done by my oncologist. My surgeon inquired about the follow up scan schedule and types of scans being done. She was satisfied with the follow up plan and type of tests being conducted and said she no longer needed see me.

    My oncologist sends her "office visit notes" that report the results of my tests and his examinations. Of course if I were to have problems I could make an appointment with her for consultation but my monitoring has switched to my oncologist.

    Best Regards,


    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
    3/14/2011 CT Scan NED

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

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