More information today - newly diagnosed

daffodilz
daffodilz Member Posts: 7
edited March 2014 in Esophageal Cancer #1
I previously posted under this subject "Newly diagnosed - so many questions". William posted 17 pages of valuable information (THANK YOU!). We got more information today. So I'll briefly give the details:

This is about my husband - age 51. Fairly good health.

12/7 - EGD - mass found - biopsy showed high-grade dysplasia - cancer suspected
12/14 - surgery consult - surgeon has been doing 5-6 Ivor Lewis surgeries yearly for 20 years
12/16 - EUS - T3 N0 or N1 - biopsy result today confirms cancer, 1 of 3 lymph nodes was +
12/21 - PET/CT
12/22 - PET/CT results - M0 (WOOOHOOO! and Praise God!)

So we are T3 N1 M0. Standard of care dictates chemo / radiation followed by surgery. Tumor is in lower esophagus, so surgery would remove only lower third of esophagus.

Medical oncology appointment 12/23.
Radation oncology appointment 12/30.

We're thinking we don't want to stick with the surgeon - not enough experience.
Called Univ of Michigan - they will see us after one more test (upper GI).
Will call Cleveland Clinic tomorrow.
Will call Karmanos Cancer Center @ Wayne State Univ (thanks William).

We live in Toledo, OH - so Ann Arbor, Cleveland and Detroit are reasoble distance.

QUESTIONS -
1. Can we move forward with chemo / radiation even though we're thinking of changing surgeons?
2. What if new surgeon wants different chemo / radiation regimen - can it be changed during treatment?
3. Does any one have contact information for Cleveland Clinic?
4. At this time we are open to Ivor Lewis or Minimally Invasive Esophagectomy or Transhiatal Esophagectomy or any other procedure - not locked into any option at this time.
5. I don't think this has all sunk in with us yet, any advice for dealing with this? We have two children 12 and 17 - we told them the news today. Any advice for the children?
6. Doc says 6 months from now hubby will be almost fully recovered.

THANK YOU SO MUCH FOR BEING HERE.

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • rmitchell
    rmitchell Member Posts: 94
    #3
    Surgery
    My husband just came home yesterday after 12 days in the hospital after E surgery. He did well and they got all of the Cancer. I would highly recommend Dr Eric Grogan at Vanderbilt Hospital here in Nashville Tn. Vanderbilt is one of the top 5 hospitals that does this type of surgery. We have a ways to go to complete recovery, but are sure it will come.
    Don had 28 Radiation treatments and 6 Chemo before Surgery. The Dr said it did its job and we are so thankful. I will keep you in my prayers.
    Reba
  • Anj_and_Rob
    Anj_and_Rob Member Posts: 29
    #4
    University of Michigan
    Sorry to hear about your husband's diagnosis. My husband, Robert age 36 was diagnosed in Feb 2010 T3N1MO as well. He went through chemo/radiation. We started the chemo/radiation before we even met with the surgeon due to the fact that of all the tests that needed to be completed before we could get in. He did go to U of M for his surgery with Dr. Mark Orringer. I can not say enough good things about this surgeon, he is very knowledgable and caring, has lots of experience..one of the best I have heard from many other surgeons and doctor's in our area. My husbands surgery was in June of this year, it was rough the first couple of months but after that he has been able to eat everything, just less. He is still building his physical endurance back to to where it was prior to all this. Our daughter who is 9 handled everything better than I thought. We always kept her informed on what was going on so her imagination wouldn't get the best of her. She sees now that in her eyes her dad is all better now. My husbands pathology came back with no signs of cancer anymore, and the first CT scan after surgery came back clean. We have another CT scan next month and we are hoping for the best. It is a very difficult journey not knowing if this disease is going to come back again. We are learning very fast to live day by day or the not knowing will drive you crazy. I wish you and your family the best of luck.

    Anjanette
  • daffodilz
    daffodilz Member Posts: 7
    #5
    Anj_and_Rob said:

    University of Michigan
    Sorry to hear about your husband's diagnosis. My husband, Robert age 36 was diagnosed in Feb 2010 T3N1MO as well. He went through chemo/radiation. We started the chemo/radiation before we even met with the surgeon due to the fact that of all the tests that needed to be completed before we could get in. He did go to U of M for his surgery with Dr. Mark Orringer. I can not say enough good things about this surgeon, he is very knowledgable and caring, has lots of experience..one of the best I have heard from many other surgeons and doctor's in our area. My husbands surgery was in June of this year, it was rough the first couple of months but after that he has been able to eat everything, just less. He is still building his physical endurance back to to where it was prior to all this. Our daughter who is 9 handled everything better than I thought. We always kept her informed on what was going on so her imagination wouldn't get the best of her. She sees now that in her eyes her dad is all better now. My husbands pathology came back with no signs of cancer anymore, and the first CT scan after surgery came back clean. We have another CT scan next month and we are hoping for the best. It is a very difficult journey not knowing if this disease is going to come back again. We are learning very fast to live day by day or the not knowing will drive you crazy. I wish you and your family the best of luck.

    Anjanette

    Thank you
    Anjanette,

    Thank you so much for the information about your husband's surgery and Dr. Orringer. I've heard so many good things about the cancer center at UM. I spoke with his office yesterday. We need one more test before they will see us. Will request from primary care today. Oncology appointments start today - don't know when treatment will start, but probably before we decide on the surgeon.

    I wish you well as you continue the journey.

    Pat

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