Frustrated and confused

chasa5
chasa5 Member Posts: 1
edited March 2014 in Esophageal Cancer #1
My Husband was diagnosed with EC stage IIB on 11/12/10 at Self Regional Healthcare, Greenwood, SC. Self Regional Healthcare stated he would not need surgery, just Chemo and Rad., would need a Port, and a feeding tube (he can still swallow), and would start treatments on 12/01/10. He had an Abd. CT and a shadow was on the liver. He had a PET scan done. Pet scan did not show anything on Liver or Lymph nodes. We asked for a 2nd opinion. MUSC (Charleston,Sc) called and stated "do not" get a port or feeding tube. He would need an EUS to properly stage EC, and they were still concerned with the liver. He has an appt. on 12/03/10 for EUS, and has consultation Thoracic surgeon. Musc is saying he "does" need surgery, if staging does not change, and may or may not need chemo and rad. There is so much to learn and with Doctors saying different things, it gets really confusing. My husband is 40 years old, scared and frustrated. I don't really have a question, just wanted to vent a little.
Thanks,
Sandy
Greenwood, SC

Comments

  • Lee Christensen
    Lee Christensen Member Posts: 49 Member
    #2
    This is an excellent place
    This is an excellent place to vent and find answers. I'm relatively new here but I already have found out alot here.
    Just vent what ever you want here you'll get some answers.

    Take Care and God be with you both.
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • paul61
    paul61 Member Posts: 1,392 Member
    #4
    Give me a call I will be happy to help
    Sandy,

    I assume your appointment at MUSC will be with Dr. Hoffman. She will do an endoscopic ultrasound and provide more accurate staging. If the staging shows your husband is a candidate for surgery you will meet with Dr. Carolyn Reed. She is an excellent surgeon (she did my Ivor Lewis surgery).

    Both Dr. Hoffman and Dr. Reed are wonderful doctors. They are caring, but upfront, and tell you exactly what your options are. You are going to a good place.

    If surgery is an option I would be sure to discuss Minimally Invasive Esophagectomy with Dr. Reed, in my case she did not feel it was the best option. I would be sure to get a second opinion about the surgery.

    I know this is a frightening time. One year ago this Friday, the same day you will be at MUSC, Dr. Reed was completing my operation. I have now recovered from the surgery, completed my chemotherapy, and am back to enjoying my life again.

    I am just down the road from you in McCormick, I am sending along my email and telephone number via private email. Please call me and I can tell you what to expect.


    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

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Donna70
    Donna70 Member Posts: 852 Member
    #5
    paul61 said:

    Give me a call I will be happy to help
    Sandy,

    I assume your appointment at MUSC will be with Dr. Hoffman. She will do an endoscopic ultrasound and provide more accurate staging. If the staging shows your husband is a candidate for surgery you will meet with Dr. Carolyn Reed. She is an excellent surgeon (she did my Ivor Lewis surgery).

    Both Dr. Hoffman and Dr. Reed are wonderful doctors. They are caring, but upfront, and tell you exactly what your options are. You are going to a good place.

    If surgery is an option I would be sure to discuss Minimally Invasive Esophagectomy with Dr. Reed, in my case she did not feel it was the best option. I would be sure to get a second opinion about the surgery.

    I know this is a frightening time. One year ago this Friday, the same day you will be at MUSC, Dr. Reed was completing my operation. I have now recovered from the surgery, completed my chemotherapy, and am back to enjoying my life again.

    I am just down the road from you in McCormick, I am sending along my email and telephone number via private email. Please call me and I can tell you what to expect.


    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

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

    Eus necessary
    Sandy,
    The staging can change radically after an EUS, it is vitally necessary to stage properly. My PET scans and CT scans did not help, in fact the cancer was biopsied during a regular EGD. So I was originally told I had a small lesion that could be scooped out. Then the EUS was done and I went from small scoopable lesion to Stage III with a lymph node involved. That was the defining point to determine the treatment plan. So that has to be done before any other decisions are made. Paul has given some great advice that should help. take care,
    Donna70
  • Myrtle9
    Myrtle9 Member Posts: 9
    #6
    Hi Sandy
    My husband also had
    Hi Sandy

    My husband also had his surgery at MUSC 2 yrs. ago. Dr. Carolyn Reed was the surgeon and Dr. Hoffman the GI dr. who did the scoping. I'm in complete agreement with Paul and everyone else about the necessity to properly stage your husband so they know exactly how much is involved. MUSC is a great hospital and a national cancer center also. The care was excellent! Our prayers are with your husband and whole family. It is a very confusing, stressful time but they will answer any of your questions, so don't hesitate to ask.

    Bonnie

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