The endoscopy test are back

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json_2011
json_2011 Member Posts: 100
Good day to all. Mother's endoscopy came back with a 3cm tumer on the mid-mid/upper. Also has spread to the place above her right collarbone. So now we have to waite to see what this small town Oncologyist is going to do. I feel strongly that any surgrey or anything out of the ordinary would take place at Piedmont in Atlanta where the one dr. has been doing this ec for 30 years , which someone posted that great imfo for me . I am about 45 min from Atlanta , where she is about 4 hours . I really did'nt like her on cologyist 1st saying she needed to go to Emory ( Atlanta ) for treatment. Also I think that The dr.s here in Atlanta could see her , get her a regimine and take back in Thomasville. The more eyes the more better we can agree im sure. So what happens next folks , is there anything i can do ?? I have all the imformation from both hospitals in Atlanta ready for her , but she insists on waiting for her oncologysist to tell her ??? She is very strong im proud to say.

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  • cher76
    cher76 Member Posts: 292
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    My husband is a stage IV EC
    My husband is a stage IV EC patient, diagnosed in October 2010. I know exactly how you feel, as we live in a midsize community at the very southern tip of Texas,and seeking treatment here just did not seem like the thing to do. We referred ourselves to MDAnderson in Houston, which is a 5 hour drive north of us, and did all the diagnostic tests and followups there. The oncologist there prescribes the treatments, and our oncologist here at home administered them.so far this has worked out well. I have found that there have not been too many cases of EC here in our area, and so they just don't have the expertise when it comes to treating it. I asked the our hometown GI doctor the other day if he had noticed an increase in the number of diagnosis of younger people with EC, and he said well he had only treated one other person and that was an 80 year old man who did not survive. So, there ya go. I would get your mom to the largest cancer center you can get to for at least the treatment plan, and then go from there. We did do a few rounds of chemo at MDA, but all the traveling was really wearing my husband down. So this arrangement works out perfect. Plus our hometown oncologist really is good at helping us manage the side effects. Good luck, and will keep you in our prayers.
    Cheryl
  • json_2011
    json_2011 Member Posts: 100
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    cher76 said:

    My husband is a stage IV EC
    My husband is a stage IV EC patient, diagnosed in October 2010. I know exactly how you feel, as we live in a midsize community at the very southern tip of Texas,and seeking treatment here just did not seem like the thing to do. We referred ourselves to MDAnderson in Houston, which is a 5 hour drive north of us, and did all the diagnostic tests and followups there. The oncologist there prescribes the treatments, and our oncologist here at home administered them.so far this has worked out well. I have found that there have not been too many cases of EC here in our area, and so they just don't have the expertise when it comes to treating it. I asked the our hometown GI doctor the other day if he had noticed an increase in the number of diagnosis of younger people with EC, and he said well he had only treated one other person and that was an 80 year old man who did not survive. So, there ya go. I would get your mom to the largest cancer center you can get to for at least the treatment plan, and then go from there. We did do a few rounds of chemo at MDA, but all the traveling was really wearing my husband down. So this arrangement works out perfect. Plus our hometown oncologist really is good at helping us manage the side effects. Good luck, and will keep you in our prayers.
    Cheryl

    thanks for the reply
    Thankyou cher , I hope your husband is doing good. we will keep you posted on my end as you do the same.
  • paul61
    paul61 Member Posts: 1,392 Member
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    Atlanta sounds like a good place to go
    Jason,

    You did not mention any staging information for your Mom. I assume they are going to do further testing (PET Scan, CT Scan, Endoscopic Ultra Sound) to define the current stage of your mothers cancer so an appropriate treatment plan can be defined.

    I have heard positive things about Emory and of course Piedmont sounds like they have some experienced oncologists as well. The key thing is to have the treatment plan defined, monitored, and adjusted as appropriate by an oncologist that has expertise in managing esophageal cancer. Once the plan has been defined the actual infusion process could be carried out in a smaller local hospital. I know there are survivors here who have had their treatment regimen defined at MD Anderson and then gone back home to their local doctor for the day to day infusion and side effect management process.

    If I were going to do this I would be sure that my local oncologist had a discussion with the oncologist experienced in managing EC treatment to define the common side effect management strategies that need to be followed for that particular treatment plan.

    My personal experience with chemotherapy was that I was much smarter about managing side effects in my last three cycles of treatment than I was in my first three. I learned that:

    - I needed to take my anti-nausea medications before I felt any nausea. Staying ahead of the nausea was important.
    - It was impossible for me to drink enough by mouth to avoid being dehydrated. IV hydration 2 to 3 days after an infusion made a big difference in how I felt.
    - Eating would be difficult during the first week after an infusion. I needed to have a supply of soft and bland foods to get me through that period.

    I would think the chemotherapy nurses in a large hospital infusion center would have more expertise in managing various side effects, but if your mom maintained a dialogue with an oncologist in a large cancer center that would probably work as well.

    Of course any surgery or interpretation of significant test results should be done at a cancer center with experience with EC. So there I think your choices would be Atlanta or MD Anderson in Orlando.

    I know getting a diagnosis like this is frightening and Mom wants to stay close to home with people she knows but this particular disease is rare enough that it requires traveling to a major center to get successful treatment.

    I think you have gathered all the right facts for your Mom, I would guess “what’s next”? is to convince her she needs to travel to get the best treatment.


    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!
  • json_2011
    json_2011 Member Posts: 100
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    paul61 said:

    Atlanta sounds like a good place to go
    Jason,

    You did not mention any staging information for your Mom. I assume they are going to do further testing (PET Scan, CT Scan, Endoscopic Ultra Sound) to define the current stage of your mothers cancer so an appropriate treatment plan can be defined.

    I have heard positive things about Emory and of course Piedmont sounds like they have some experienced oncologists as well. The key thing is to have the treatment plan defined, monitored, and adjusted as appropriate by an oncologist that has expertise in managing esophageal cancer. Once the plan has been defined the actual infusion process could be carried out in a smaller local hospital. I know there are survivors here who have had their treatment regimen defined at MD Anderson and then gone back home to their local doctor for the day to day infusion and side effect management process.

    If I were going to do this I would be sure that my local oncologist had a discussion with the oncologist experienced in managing EC treatment to define the common side effect management strategies that need to be followed for that particular treatment plan.

    My personal experience with chemotherapy was that I was much smarter about managing side effects in my last three cycles of treatment than I was in my first three. I learned that:

    - I needed to take my anti-nausea medications before I felt any nausea. Staying ahead of the nausea was important.
    - It was impossible for me to drink enough by mouth to avoid being dehydrated. IV hydration 2 to 3 days after an infusion made a big difference in how I felt.
    - Eating would be difficult during the first week after an infusion. I needed to have a supply of soft and bland foods to get me through that period.

    I would think the chemotherapy nurses in a large hospital infusion center would have more expertise in managing various side effects, but if your mom maintained a dialogue with an oncologist in a large cancer center that would probably work as well.

    Of course any surgery or interpretation of significant test results should be done at a cancer center with experience with EC. So there I think your choices would be Atlanta or MD Anderson in Orlando.

    I know getting a diagnosis like this is frightening and Mom wants to stay close to home with people she knows but this particular disease is rare enough that it requires traveling to a major center to get successful treatment.

    I think you have gathered all the right facts for your Mom, I would guess “what’s next”? is to convince her she needs to travel to get the best treatment.


    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!

    your the man
    Paul , thankyou for every thing you said ! You pretty much hit the nail on th head. I will do as you say , and she needs some extra eyes on her. Question : Did ya'll run into insurance problems ? we are , they I dont no who sent her to the local S.S office to get disability , we both know thats not going to happen overnight. She does not need this. Also hear is what is going on . The endoscopy did confirm a larg tumer on mid- mid/upper. They did not stage. She has an oppiontment nex thur. this is already going into week 4 ! I am very unsatisfied with the small town testing... a test one week , a test anorther. Well we will know next week , and I sure will let you now . Thanks for the advice !


    Jason Alley