Father diagnosed yesterday. Need to find an oncologist in Chicago/Midwest

DanaMB3
DanaMB3 Member Posts: 98
edited March 2014 in Esophageal Cancer #1
Hello -

I found this site after my 66 year old father was diagnosed yesterday. He had an endoscopy which showed tumor mass at 35cm into the esophagus, at its bulkiest point it obstructs 2/3's of the esophagus. The findings read that "at the gastro esophageal junction, extending into the stomach prominent tissue was noted, likely spread from the esophus. It says whether this tissue was intrinsic or extrinsic to the stomach was not immediately clear. The distal stomach was normal". While not written on the report, the doctor told us is looks like there may be tissue in the lymph nodes in between the stomach and liver.
The doctor suggested this would not be operable since it has already begun to spread.

The two areas were biopsied and we expect the results in the next two days.

We need to find an oncologist TODAY. We live in the Chicago area and are willing to travel if necessary but hope to find someone near.

Does anyone know of a highly recommended oncologist for this type of cancer in the Chicago (or near by) area?

I would welcome any other resources for this situation, it's all very new to our whole family and we are feeling lost.

Many thanks in advance.

Comments

  • BMGky
    BMGky Member Posts: 621
    #2
    Have you had the staging scope performed
    From what I understand, staging is of the essence and suggests treatment protocol. Is it referenced an EUS scan??? Anyway, definitive prognosis cannot be made without staging. This scan, if not performed already, needs to be scheduled as soon as possible. Also, others are mentioning a test for a positive receptor. They can tell you more but from what I understand, those that have advanced disease may benefit from a new treatment regimen based on this positive receptor being present. Mr. Marshall and others are so helpful and their advices will steer you in the right direction. I have tried to follow them wherever possible. Please let us know what is happening.
  • sal314
    sal314 Member Posts: 599 Member
    #3
    Hi Dana
    We live in the Chicagoland area as well. My father was diagnosed in March of this year with EC at the junction as too. He was staged at IVB as it had already gone to his liver.

    I don't have a specific name, has he has seen a couple of different doctor's. He went to RUSH and U of Chicago. He considered MD Anderson in Texas, but since his diagnoses is inoperable and not cureable, he's seeing someone closeer to home. However, he's tied into U of Chicago, which is a teaching hospital and has the latest and greatest drugs and is in on the newest research, clinical trials, etc.

    I've had a couple of surgeries at U of Chicago myself, as I'm 9 year breast cancer survivor. I was very impressed with their doctor's and level of care there.

    It's always good to get a second opinion. You may want to consider Mayo Clinic in MN as well.

    As far as my dad's condition, he's actually doing really well. He's much better off than when he was first diagnosed. He doesn't have the classical EC symptoms, can eat and swallow fine. He's tried several different chemos and had some issues with some. He's been on Taxol for a couple of months which has worked really well for him. The scary part is now he's on a "break" so his body can heal a bit, as chemo is so hard on everything. That's when the cancer tends to spread. His mets went to his spine last time he took a break. But hasn't spread anywhere else since then. Hoping he'll get through this "break" without any major flair ups of the cancer. But...we all know that his good fortune won't go on indifinately. At some point the chemo will stop working and we'll have to make the most out of the days God gives us.

    That's what sucks about cancer! You can only do so much before it eventually get you. :(

    So...I'd look into RUSH, U of Chicago, Northwestern. They are all good hospitals. And if your willing to travel, Mayo an MD Anderson (TX) is up there on the best hospitals for EC cancer.

    You'll probably be hearing from William Marshall and Sherri. They are the "experts" on the board and their advice and knowledge of EC is priceless!

    Blessings,

    Sally
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  • oriontj
    oriontj Member Posts: 375
    #7
    I do
    Her name is Dr. Victoria Villifor (e) don't remember that...she's at the U. of Chicago. This is her speciality. You can check on the U of C's website and find her.

    She has taken care of my husband since last August...they have clinical trials there and we feel that it saved his life...it's been over a year and just lately a slight thickening was seen in the esophagus.

    I would also check out Northwestern and Rush. We only have experience with the U, of Chicago but they have done a wonderful job so far...My husband was not eligible for surgery due to one lymph node but after radiation and chemo with the clinical trial drug was clear for a year...and as far as we know still is. She is an aggressive doctor which means she'll pull out all her arsenal...

    Hope this helps you...I would call and schedule an appointment and then one at Northwestern as soon as you can. This is miserable time to hear such bad news...the Holidays...but the Hospitals and Drs...still work...

    jan
  • DanaMB3
    DanaMB3 Member Posts: 98
    #8
    Thank you
    Thank you all so far for your wonderful replies and suggestions. My mom, sister and I have been reading through them today and they are so very useful. We have an appointment tomorrow morning with an oncologist at the local hospital and hope to have the biopsy results back. From there, we will make a 2nd appointment for early next week and it looks like we will target U of Chicago and I will look for Dr. V - thank you.

    Are there any opinions of the Cancer Treatment Centers of America?
    There is one near us where a doctor that has come highly recommened to us. We just don't know anything about the credentials/reputation of the CTCA (?)

    Thanks
  • oriontj
    oriontj Member Posts: 375
    #9
    DanaMB3 said:

    Thank you
    Thank you all so far for your wonderful replies and suggestions. My mom, sister and I have been reading through them today and they are so very useful. We have an appointment tomorrow morning with an oncologist at the local hospital and hope to have the biopsy results back. From there, we will make a 2nd appointment for early next week and it looks like we will target U of Chicago and I will look for Dr. V - thank you.

    Are there any opinions of the Cancer Treatment Centers of America?
    There is one near us where a doctor that has come highly recommened to us. We just don't know anything about the credentials/reputation of the CTCA (?)

    Thanks

    Personally
    I would go to a large well recommended teaching hospital...one of the three in Chicago..One of our friends has recounted to us that Cancer Centers of America is picky about insurance carriers...Medicare isn't their favorite. But you would have to see for yourself.

    I never would consider them with such good hospitals available in Chicago...but that's only the opinion of one person..me. I don't anyone of the board that has gone there.
    Is there any one? They could best tell you.

    It sounds like you're getting all your ducks lined up. One of my favorite things to do...not everyone in my house does that.

    Hopefully they will have the info you need and perhaps they will have a rec for you or you could ask...

    My husband was not eligible for surgery before but if the thickening turns out to be a reoccurance might be now.

    You just don't know which this cancer...it's mean and aggressive..

    Wish you all the luck...and if you need to you can email me and if you need to talk on the phone, I'll be more than happy to help you and your family and so will my husband. This is one journey where it's best not to walk alone.

    jan
  • DanaMB3
    DanaMB3 Member Posts: 98
    #10
    Dad had oncology consult today
    My dad had his consultation with the oncologist that was recommended to us by the Gastroenterology doctor. He had the biopsy results back which confirmed his tumor as adenocarcinoma at the GE junction. He said it is in some regional lymph nodes and is beginning to spread to the stomach. We do not yet know the stage/if it has traveled elsewhere in the body. We have a PET and CAT scan scheduled for the 23rd. They are also going to do an EKG to check his heart health before he begins treatment.

    Though we won't know our course of action until the PET is done, he suggested a couple of scenarios for chemo. 1) if dad tests + for the HER2 he would want him to receive herceptin and Fol Fox. If he is HER2 negative than he would recommend either "ECF" (a.k.a. Magic Regimen he called it) or EOX. (If anyone is familiar with these/has an opinion/experience I would appreciate it!) He said for his radiation treatment he would do it externally. Then finally if he is a candidate for surgery that would be last. He said based on the size of the tumor he does not think he would be a candidate for a minimally invasive surgery.

    This doctor was WONDERFUL to speak with (Dr. Gary Gordon, Northwest Oncology-Hematology in the suburbs of Chicago) and did not once rush us through the list of 22 questions we had (all of these questions we were armed with thanks to you). We asked if he had a recommendation at the highly regarded University of Chicago and he was very happy to give us a name of someone there and encouraged us to make an appointment with him for a 2nd opinion. A couple of hours after the appointment he personally called my parents at home and said he had an additional referral at the University of Chicago that he would recommend - the doctor who he said just became the head of the EC department. This is also who Jan recommended to me above - Dr. Victoria Villaflor. We are going to make an appointment with her for a consult as well and by that time will know the stage, etc.

    I have to thank you that have responded to me and shared information with me. We have read over every response, and every website you have all referred us to educate ourselves on this cancer and felt so much more well prepared for the appointment today than we thought we could be. It’s comforting to find a place like this with generous people rather than to be searching the whole world wide web for information with no direction.

    I will keep you posted on my dad. Thank you again!
  • Unknown
    Unknown
    #11
    DanaMB3 said:

    Dad had oncology consult today
    My dad had his consultation with the oncologist that was recommended to us by the Gastroenterology doctor. He had the biopsy results back which confirmed his tumor as adenocarcinoma at the GE junction. He said it is in some regional lymph nodes and is beginning to spread to the stomach. We do not yet know the stage/if it has traveled elsewhere in the body. We have a PET and CAT scan scheduled for the 23rd. They are also going to do an EKG to check his heart health before he begins treatment.

    Though we won't know our course of action until the PET is done, he suggested a couple of scenarios for chemo. 1) if dad tests + for the HER2 he would want him to receive herceptin and Fol Fox. If he is HER2 negative than he would recommend either "ECF" (a.k.a. Magic Regimen he called it) or EOX. (If anyone is familiar with these/has an opinion/experience I would appreciate it!) He said for his radiation treatment he would do it externally. Then finally if he is a candidate for surgery that would be last. He said based on the size of the tumor he does not think he would be a candidate for a minimally invasive surgery.

    This doctor was WONDERFUL to speak with (Dr. Gary Gordon, Northwest Oncology-Hematology in the suburbs of Chicago) and did not once rush us through the list of 22 questions we had (all of these questions we were armed with thanks to you). We asked if he had a recommendation at the highly regarded University of Chicago and he was very happy to give us a name of someone there and encouraged us to make an appointment with him for a 2nd opinion. A couple of hours after the appointment he personally called my parents at home and said he had an additional referral at the University of Chicago that he would recommend - the doctor who he said just became the head of the EC department. This is also who Jan recommended to me above - Dr. Victoria Villaflor. We are going to make an appointment with her for a consult as well and by that time will know the stage, etc.

    I have to thank you that have responded to me and shared information with me. We have read over every response, and every website you have all referred us to educate ourselves on this cancer and felt so much more well prepared for the appointment today than we thought we could be. It’s comforting to find a place like this with generous people rather than to be searching the whole world wide web for information with no direction.

    I will keep you posted on my dad. Thank you again!

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  • DanaMB3
    DanaMB3 Member Posts: 98
    #12
    unknown said:

    This comment has been removed by the Moderator

    Thank you William
    Thank you for reaching out to Dr. Luketich. We are so touched that "strangers" are willing to take time out of their day to help us. It's an unexpected comfort at this time and one we will not take for granted.

    We have put together a list of a few surgeons in the Chicago area that have been receommended to us in the past 2 days and have added him to our list! We are currently praying that we get to utilize this list when we hopefully hear that surgery is an option.

    Thanks again, your kindness brings something positive to this awfully negative week we have had.
  • sal314
    sal314 Member Posts: 599 Member
    #13
    DanaMB3 said:

    Thank you William
    Thank you for reaching out to Dr. Luketich. We are so touched that "strangers" are willing to take time out of their day to help us. It's an unexpected comfort at this time and one we will not take for granted.

    We have put together a list of a few surgeons in the Chicago area that have been receommended to us in the past 2 days and have added him to our list! We are currently praying that we get to utilize this list when we hopefully hear that surgery is an option.

    Thanks again, your kindness brings something positive to this awfully negative week we have had.

    Hey Dana...
    I live close to Northwest Community. If you ever want to talk, I'd be more than happy to. Just email me privately and I'll give you my phone number.

    Sally
  • scrubtu
    scrubtu Member Posts: 4
    #14
    Dana,
    My father was also
    Dana,
    My father was also has cancer of the GE Junction . He has gone thru 4 rounds of chemo. He had a scan last week and all the lymph nodes were clear for cancer. The doctor told us he was responding very well to the types of chemo drugs he has had. His doctor is in Aurora Il , i would love to give you his doctors info if you are close to Aurora,Il.
  • DanaMB3
    DanaMB3 Member Posts: 98
    #15
    scrubtu said:

    Dana,
    My father was also
    Dana,
    My father was also has cancer of the GE Junction . He has gone thru 4 rounds of chemo. He had a scan last week and all the lymph nodes were clear for cancer. The doctor told us he was responding very well to the types of chemo drugs he has had. His doctor is in Aurora Il , i would love to give you his doctors info if you are close to Aurora,Il.

    Thanks
    Thanks for your post, that is encouraging to me that he is responding well.
    We will be hoping for the same for my dad soon. I think we are moving forward with the doctors we have already seen, but thank you for offering the recommendation.

    3 questions -

    1) was he HER2 positive?
    2) is his cancer adenocarcinoma? (are they all that type at the GE junction?)
    3) what type of chemo is he receiving?

    Many thanks and continued good progress for your father.
  • DanaMB3
    DanaMB3 Member Posts: 98
    #16
    sal314 said:

    Hey Dana...
    I live close to Northwest Community. If you ever want to talk, I'd be more than happy to. Just email me privately and I'll give you my phone number.

    Sally

    Thank you Sally!

    Thank you Sally!

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