It's been 4 weeks and nothings being done

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jcdeaver
jcdeaver Member Posts: 9
edited March 2014 in Esophageal Cancer #1
My Brother, Joe, was diagnosed with EC by his Gastro doctor 4weeks ago. He did a biopsy and a CAT scan and sent him to an oncologist. The oncologist ordered another biopsy because the first one was inconclusive. We went to the oncologist yesterday but he could not tell us anything because he did not have the results yet. We are at the St.Joseph's Hospital in Baltimore Md. The Cat scan shows a tumor in the esophagus, 2 spots on the liver and it has affected the lymph nodes. It dosen't sound like we should be sitting still. I am very upset that the hospital did not give us any direction on how thier "Cancer Treatment Team" will be handling our battle. Even without the test results we should have some direction to go in. All the doctor said was to try to keep eating and wait for results. Very frustrating!!

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  • unclaw2002
    unclaw2002 Member Posts: 599
    #2
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    A second opinion is in order
    A second opinion is in order when you are faced with a rare cancer diagnosis, and certainly when it sound like his medical team is on vacation. Don't wait any more.

    I would take my brother Joe and run, not walk, on over to Johns Hopkins Hospital in Baltimore. They are one of the top rated cancer hospitals in the country for the treatment of Esophageal Cancer. You must look at this as a battle that you intend to win, notwithstanding the lack of urgency some physicians may display.

    I know there are others on this site who have been treated in the Baltimore area and may have some names of oncologists and surgeons in the area or other hospitals - I urge them to speak up.

    There are also options out of State if your brother is able and willing to seek treatment elsewhere . . . of course there is always the age old question about insurance.

    I live in Delaware and took my dad to Sloan Kettering in New York, there is also Fox Chase in Philly and Pitt and James Luketich, MD. who has treated many on this site. And other places across the country, MD Anderson in Houston, the Mayo Clinic etc. etc. If you can go back and look at some of William Marshall's posts he has many links to treatment options in his posts - or he most likely will respond to you directly.

    But your first job is to have your brother get a correct evaluation, have his cancer identified and staged and then consider the various treatment alternatives available to him depending on the staging of his cancer, and his health. I wish you luck and you have come to the right place. There are folks on this board that give of their time and experience to make it easier for the next one to walk this path.

    Best,
    Cindy
  • Unknown
    Unknown
    #3
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    This comment has been removed by the Moderator
  • emg09
    emg09 Member Posts: 228
    #4
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    unknown said:

    This comment has been removed by the Moderator

    Hi,
    Today is my 1st day back
    Hi,

    Today is my 1st day back on this site. I live in the DC area, just to give you some insite on these hospitals and my dad's story. When diagnosed, we were sent to Georgetown, stay away from there. They misdiagnosed my dad. Time was wasted there. We then we to see Dr. Luketich and surgery was scheduled. The day surgery was started Dr. Luketich found the cancer had spread to the lining of the stomach and surgery could not be done. We put my dad into a clinical study out there. SO my parents commuted back and forth. But, with winter coming at the time and my dad being tired of the travel we went to Johns Hopkins. It was the biggest mistake ever. Treatment was slow and the oncologist was not readily available. She had new things going on in her life. Anyway, my father passed away in April. It's been a long sad journey since he was diagnosed and now dealing with his death. I do know that Donna70 was treated at St. Joes. I believe she's doing well. I'm not sure where you live, but I would recommend Dr. Luketich as the surgeon. He was wonderful. I called him before even making an apt. with him. He talked with me and then called my parents and spoke with them. I was so amazed at him taking the time to make several phone calls to me and my parents. From where we live, it was a 5 hour drive, but well worth it at the time. I can tell you Johns Hopkins and Georgetown were HUGE disappointments to us. I wish you the best of luck with your brother's journey, there are many battles to fight.

    Erika
  • Donna70
    Donna70 Member Posts: 852 Member
    #5
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    I go there don't kow what is going on??
    JC,
    I have had my full treatment done at St. Joe's and can't understand what is going on with your brother's case. Is he scheduled for an EUS yet, that is when they do a biopsy and stage the disease. I did that after my first biopsy and then got the CT scan etc. They are usually very good at St. Joe's. My onc dr is Dr. Schraeder and he is pretty good. I would try to reach the dr again and voice your concerns about not getting the results. Have they set up the full team workup where all the drs come in and meet your brother individually and go over the treatment plan. It seems sometimes results are hard to come by, I now ask for my own copy to be sent to me. I got my Ct results before my dr in one case. I was diagnosed in late July last year but did not start my chemo till September after all my other tests but I had one tumor and one node involved. Sometimes the nurse coordinators get the ball rolling when you call but it seems like your brother has not met them yet. I hope you get better results my care has been excellent there and have not heard anyone else have trouble there. take care,
    Donna70
  • jcdeaver
    jcdeaver Member Posts: 9
    #6
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    Donna70 said:

    I go there don't kow what is going on??
    JC,
    I have had my full treatment done at St. Joe's and can't understand what is going on with your brother's case. Is he scheduled for an EUS yet, that is when they do a biopsy and stage the disease. I did that after my first biopsy and then got the CT scan etc. They are usually very good at St. Joe's. My onc dr is Dr. Schraeder and he is pretty good. I would try to reach the dr again and voice your concerns about not getting the results. Have they set up the full team workup where all the drs come in and meet your brother individually and go over the treatment plan. It seems sometimes results are hard to come by, I now ask for my own copy to be sent to me. I got my Ct results before my dr in one case. I was diagnosed in late July last year but did not start my chemo till September after all my other tests but I had one tumor and one node involved. Sometimes the nurse coordinators get the ball rolling when you call but it seems like your brother has not met them yet. I hope you get better results my care has been excellent there and have not heard anyone else have trouble there. take care,
    Donna70

    Donna,
    Thanks for
    Donna,
    Thanks for posting. We have not heard from the doctor yet. His last biopsy was done on June3rd so it's been 1 week. He has had a CAT scan done and the doctor has the results of that. We are seeing Dr Schraeder and I'm glad to talk with someone whose has seen him. We are alittle reluctant because we can't find anyone who knows him. Joe's CAT shows a tumor in the esophagus and 2 spots on his liver and that it has effected the lyphm nodes. I am not expecting very good news,which I hope comes today. We are setting up for a second opinion at Hopkins for early next week with Dr. Rosalyn Juergens or Dr. Steven Yang. I just read that some are not happy with Hopkins.
    We have not met with anyone at St.Joe's other then Dr Shchaeder. I'm glad to hear you say that they will set up a full team work up. I was upset that no one there had told anything about how they would be approaching our case. I hope we can talk with the people who will be involved.
    Can you tell me anything that we can expect as far as how they opperate as a team?
    Thanks for being here!!

    John
  • Donna70
    Donna70 Member Posts: 852 Member
    #7
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    jcdeaver said:

    Donna,
    Thanks for
    Donna,
    Thanks for posting. We have not heard from the doctor yet. His last biopsy was done on June3rd so it's been 1 week. He has had a CAT scan done and the doctor has the results of that. We are seeing Dr Schraeder and I'm glad to talk with someone whose has seen him. We are alittle reluctant because we can't find anyone who knows him. Joe's CAT shows a tumor in the esophagus and 2 spots on his liver and that it has effected the lyphm nodes. I am not expecting very good news,which I hope comes today. We are setting up for a second opinion at Hopkins for early next week with Dr. Rosalyn Juergens or Dr. Steven Yang. I just read that some are not happy with Hopkins.
    We have not met with anyone at St.Joe's other then Dr Shchaeder. I'm glad to hear you say that they will set up a full team work up. I was upset that no one there had told anything about how they would be approaching our case. I hope we can talk with the people who will be involved.
    Can you tell me anything that we can expect as far as how they opperate as a team?
    Thanks for being here!!

    John

    this is my experience
    Hi John,
    I was seen at first by an oncology surgeon who could not do the surgery because of childbirth then set up with Dr. Krasna, thoracic surgeon. But my oncologist has been Dr. Schraeder who was in charge of my chemo. I had to be admitted to the hospital for chemo because of my age, 65 and was getting radiation at the same time. Now, everyone who walked in my room could not say enough about Dr. Schraeder and he came in and saw me everyday and talked to me about what was going on. I also can email him and he answers promptly so does Dr. Krasna. I am surprised no one has talked about the team approach but your brother's case differs in that he has more areas of concern and may not be a candidate for surgery. But I am not a dr so I don't know. But if your brother was given a card there is an email address, you all can email Dr. Schraeder with a list of your concerns and ask the questions that are bothering you. I don't blame you for getting a second opinion but I will have to say in this time, all hospitals are vying for the business of cancer sad to say so they will tell you they are the ones to go to. I have to say with all my complications I was able to reach my drs and the nurse coordinators. Hope your brother has an appointment set up with Dr. Schraeder and he must ask the tough questions, what is the treatment, what stage, what options. Sherri and Jim have seen tumors and spots disappear and they keep trucking and go to new therapies if some don't work. St. Joseph's did not get the only Cancer Institute award in our state without doing something right, but you have to go with your gut and who is going to stand in your corner and fight for your brother, it is too early to give up. If you want to ask me more questions please feel free to contact me at my regular email, hoperene@aol.com, I will be glad to answer any questions. take care and good luck to your brother Joe. Prayers always,
    Donna70
  • jcdeaver
    jcdeaver Member Posts: 9
    #8
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    Donna70 said:

    this is my experience
    Hi John,
    I was seen at first by an oncology surgeon who could not do the surgery because of childbirth then set up with Dr. Krasna, thoracic surgeon. But my oncologist has been Dr. Schraeder who was in charge of my chemo. I had to be admitted to the hospital for chemo because of my age, 65 and was getting radiation at the same time. Now, everyone who walked in my room could not say enough about Dr. Schraeder and he came in and saw me everyday and talked to me about what was going on. I also can email him and he answers promptly so does Dr. Krasna. I am surprised no one has talked about the team approach but your brother's case differs in that he has more areas of concern and may not be a candidate for surgery. But I am not a dr so I don't know. But if your brother was given a card there is an email address, you all can email Dr. Schraeder with a list of your concerns and ask the questions that are bothering you. I don't blame you for getting a second opinion but I will have to say in this time, all hospitals are vying for the business of cancer sad to say so they will tell you they are the ones to go to. I have to say with all my complications I was able to reach my drs and the nurse coordinators. Hope your brother has an appointment set up with Dr. Schraeder and he must ask the tough questions, what is the treatment, what stage, what options. Sherri and Jim have seen tumors and spots disappear and they keep trucking and go to new therapies if some don't work. St. Joseph's did not get the only Cancer Institute award in our state without doing something right, but you have to go with your gut and who is going to stand in your corner and fight for your brother, it is too early to give up. If you want to ask me more questions please feel free to contact me at my regular email, hoperene@aol.com, I will be glad to answer any questions. take care and good luck to your brother Joe. Prayers always,
    Donna70

    still waiting
    Joe called the hospital today to find out if the results were back yet. They said the biopsy was sent to another lab for some kind of stain test. I don't know what that is.
    His fist biopsy was done on May 13th which came back inconclusive, the second was done on June 3rd and now that this one has been sent to another lab that they say will take another 7 to 10 days,from Monday June 7th that puts us to June 18th. That's 5 weeks since the 1st biopsy.
    We are setting up for a secound opinion but don't want to until we have the results from the test so we can take them with us. I'm not sure if waiting is the right thing to do.
  • Unknown
    Unknown
    #9
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    jcdeaver said:

    still waiting
    Joe called the hospital today to find out if the results were back yet. They said the biopsy was sent to another lab for some kind of stain test. I don't know what that is.
    His fist biopsy was done on May 13th which came back inconclusive, the second was done on June 3rd and now that this one has been sent to another lab that they say will take another 7 to 10 days,from Monday June 7th that puts us to June 18th. That's 5 weeks since the 1st biopsy.
    We are setting up for a secound opinion but don't want to until we have the results from the test so we can take them with us. I'm not sure if waiting is the right thing to do.

    This comment has been removed by the Moderator
  • unclaw2002
    unclaw2002 Member Posts: 599
    #10
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    GO FOR IT NOW GET THE SECOND OPINION - DON'T WAIT
    I would still go for the second opinion. They may even want to do some of their own tests and in any event you may be able to have them consult with your current docs to develop a cancer treatment regime. I can tell you it is extremely frustrating during the staging and treatment discussions because there seem to be many different approaches. Some want chemo and radiation, some want 1,2,3 or 4 agents, some say yes to surgery some say no --- what type of chemo agents what about your other physical conditions how do they impact the treatment. At some points during the discussions about my father I wanted to yell okay stop --- lets all start over. Anyway it is so hard to get an appointment with a doctor who is a specialist in EC that I would make the appointment go see them, still talk to your first doctor and then after you have met both of them you can make a determination. Don't wait, this cancer is relentless and you don't want to put off treatment any more than necessary. And from the sounds of it even if you get your results in a week or so it may take several more weeks for them to put a treatment plan in place and get it started. GO FOR IT --- you won't ever regret getting a second opinion.

    And from a personal note my father was set on getting treated near his home, but he agreed (because I begged and did that daughter thing) to get a second opinion at a cancer center. And although he didn't get treatment there that opinion changed the course of his treatment and the new doctors dictated the chemo and radiation treatment and were the ones to discuss the need to pay attention to the chemo side effects because of the diabetes.

    best,Cindy
  • Unknown
    Unknown
    #11
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