Esophageal Cancer Hospitals and Doctors list from patients and survivors

jaycc
jaycc Member Posts: 122
in Esophageal Cancer #1
Hi Sherri and William,
Please feel free to remove this post, if it is better handled in email.
I'm am working on a list of EC cancer centers (first priority) and list of doctors that can be posted on the web for all to reference. Currently the ACS and NCI do not provide EC specific listing only comprehensive cancer centers. They both provide a look ups by area and ACS provides a referral service, if you call them. But again the referral is just a listing of large cancer centers. ECAN will not post a list, but patient based groups can post the list with the usual disclaimer.

The request to patients/survivors have been posted on other discussion boards, and facebook walls.
If you already have a list from this discussion board, and you would like to share could you let me know ? If not , I would like to put up a discussion topics to ask this group as well.

Also, fyi, for sharing EC information on the web, there are several disconnects that are fixable. For example, the newbie and google search, doesn't get people to the right place, and as you know you don't have alot of time when you first hear the word. I won't bore you with all the IT planning jargon, but there will be a volunteer group of IT designers getting together to see what changes might be done.

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • mrsbotch
    mrsbotch Member Posts: 349
    #3
    unknown said:

    This comment has been removed by the Moderator

    Sherri
    I cannot think of one
    Sherri

    I cannot think of one hospital in Georgia that I would remend for EC. I wish I could. Vince supposedly had the best at Emory and that turned out to be a 3 ring circus. If I can help in any other way I will.


    If only Vince had gone to a hospital and DR that did numerous EC surgerys our outcome may have been better as he was between stage 1 and 2 when diagnosed.


    Barbara
  • jaycc
    jaycc Member Posts: 122
    #4
    unknown said:

    This comment has been removed by the Moderator

    listing information
    Sherri,
    Of your list, you can find Clinical trials on several sites for EC. Suggest linking to it. These of course change all the time alot.
    For MIE, IL and the THE, the stats are collected at most institutions. It is really the mechanics of AMA or NCI being interested in the additional details of the surgery types. The other option which the PR departments are sometimes willing to do, especially if a group asked for it, is to post on their hospital sites, the # of these surgeries.
    Do you know if MIE,IL and THE need an additional certification/qualification ? If not they are types of surgeries. I will check with a few people and see if I can get this answer. If they need paperwork, there are additional agencies that would have the information.

    So some of options are:
    -Collect directly from patients/survivors
    -See if SEER has data - I'm asking them if they will provide the existing survival rates by stage, support details, which have locations and other good stuff.
    -Go to organization groups in thoracic and see if they have that detail.
    -Ask hospital groups to post the information on their sites. Those who do it, will usually respond quickly.

    The tough part is EC in the cancer world is a small number, but deadly. Some don't even want to add EC , they want to leave it under Head and Neck.
    I probably don't have to tell you the politics are deep, but there is ways around politics.
  • Unknown
    Unknown
    #5
    jaycc said:

    listing information
    Sherri,
    Of your list, you can find Clinical trials on several sites for EC. Suggest linking to it. These of course change all the time alot.
    For MIE, IL and the THE, the stats are collected at most institutions. It is really the mechanics of AMA or NCI being interested in the additional details of the surgery types. The other option which the PR departments are sometimes willing to do, especially if a group asked for it, is to post on their hospital sites, the # of these surgeries.
    Do you know if MIE,IL and THE need an additional certification/qualification ? If not they are types of surgeries. I will check with a few people and see if I can get this answer. If they need paperwork, there are additional agencies that would have the information.

    So some of options are:
    -Collect directly from patients/survivors
    -See if SEER has data - I'm asking them if they will provide the existing survival rates by stage, support details, which have locations and other good stuff.
    -Go to organization groups in thoracic and see if they have that detail.
    -Ask hospital groups to post the information on their sites. Those who do it, will usually respond quickly.

    The tough part is EC in the cancer world is a small number, but deadly. Some don't even want to add EC , they want to leave it under Head and Neck.
    I probably don't have to tell you the politics are deep, but there is ways around politics.

    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #6
    jaycc said:

    listing information
    Sherri,
    Of your list, you can find Clinical trials on several sites for EC. Suggest linking to it. These of course change all the time alot.
    For MIE, IL and the THE, the stats are collected at most institutions. It is really the mechanics of AMA or NCI being interested in the additional details of the surgery types. The other option which the PR departments are sometimes willing to do, especially if a group asked for it, is to post on their hospital sites, the # of these surgeries.
    Do you know if MIE,IL and THE need an additional certification/qualification ? If not they are types of surgeries. I will check with a few people and see if I can get this answer. If they need paperwork, there are additional agencies that would have the information.

    So some of options are:
    -Collect directly from patients/survivors
    -See if SEER has data - I'm asking them if they will provide the existing survival rates by stage, support details, which have locations and other good stuff.
    -Go to organization groups in thoracic and see if they have that detail.
    -Ask hospital groups to post the information on their sites. Those who do it, will usually respond quickly.

    The tough part is EC in the cancer world is a small number, but deadly. Some don't even want to add EC , they want to leave it under Head and Neck.
    I probably don't have to tell you the politics are deep, but there is ways around politics.

    This comment has been removed by the Moderator
  • jaycc
    jaycc Member Posts: 122
    #7
    unknown said:

    This comment has been removed by the Moderator

    EC information findable
    Sherri,
    I agree with you that talking to people who are living the experience seems to be the number one thing people want, and doctors cannot do that very well. My concerns are 2 fold. 1. Finding EC information/people to talk to when you are diagnosed, and you don't have alot of time to search through the web. Even this discussion board is not easy to find, and it has a great set of active people and one of the largest groups of US people.
    Its kind of ashame there are a bunch of awareness sites and each one seems to get stuck, but it is wonderful there are people out there .
    We work with talents that we have been given. One of mine is the big world of the worldwide web, and industry databases, along with peers who will help for awhile free. That gang can work on getting the google search better and some tips for you and sites like this so when someone is new to EC googles, people can get here quicker, or in some cases get here at all.

    My industry can get caught up in where and who has the better site. I don't personally care where lists of information get posted, here, ECAN, GEEC... just that it does get posted so it can help people.
    When it comes down to it, it is still about people, and people who are willing to care.

    I think of it as Horten hears a Who. "We are here, We are here" this site is here, you are not alone when you here the words Esophageal Cancer, there are others.

    There are things we cannot fix, but to quote one person who came on this site in the last month "I stumbled upon this site", I'd like to increase the odds that a person looking to talk to another EC person can get to one. Something my husband could of used.
  • Amjosmom
    Amjosmom Member Posts: 212
    #8
    jaycc said:

    EC information findable
    Sherri,
    I agree with you that talking to people who are living the experience seems to be the number one thing people want, and doctors cannot do that very well. My concerns are 2 fold. 1. Finding EC information/people to talk to when you are diagnosed, and you don't have alot of time to search through the web. Even this discussion board is not easy to find, and it has a great set of active people and one of the largest groups of US people.
    Its kind of ashame there are a bunch of awareness sites and each one seems to get stuck, but it is wonderful there are people out there .
    We work with talents that we have been given. One of mine is the big world of the worldwide web, and industry databases, along with peers who will help for awhile free. That gang can work on getting the google search better and some tips for you and sites like this so when someone is new to EC googles, people can get here quicker, or in some cases get here at all.

    My industry can get caught up in where and who has the better site. I don't personally care where lists of information get posted, here, ECAN, GEEC... just that it does get posted so it can help people.
    When it comes down to it, it is still about people, and people who are willing to care.

    I think of it as Horten hears a Who. "We are here, We are here" this site is here, you are not alone when you here the words Esophageal Cancer, there are others.

    There are things we cannot fix, but to quote one person who came on this site in the last month "I stumbled upon this site", I'd like to increase the odds that a person looking to talk to another EC person can get to one. Something my husband could of used.

    That was me!
    I "stumbled" upon CSN. I had been searching for a list of others with EC. I wanted to find somewhere to talk to others about treatments, diets, support and any info I could get my hands on. What about putting an ad up on FB? A link that would spread awareness AND lead people here? I don't know technical stuff, but I do know how to click!! And I FB a lot. I don't think there's anyone left without a FB! I also Google EVERYTHING from recipes to how long it will take me to get somewhere. But when I searched EC... I had to dig. I think you guys are on the right track. If there's anything I can do, please let me know. I tell EVERYONE I know about this site. I even visit other EC sites and send people the link to here. I think that may be how Anna got here. I hope it helps them to be here as much as it has helped me!

    THANK YOU!!

    ~Jayme
  • Bermudagirl
    Bermudagirl Member Posts: 114
    #9
    Amjosmom said:

    That was me!
    I "stumbled" upon CSN. I had been searching for a list of others with EC. I wanted to find somewhere to talk to others about treatments, diets, support and any info I could get my hands on. What about putting an ad up on FB? A link that would spread awareness AND lead people here? I don't know technical stuff, but I do know how to click!! And I FB a lot. I don't think there's anyone left without a FB! I also Google EVERYTHING from recipes to how long it will take me to get somewhere. But when I searched EC... I had to dig. I think you guys are on the right track. If there's anything I can do, please let me know. I tell EVERYONE I know about this site. I even visit other EC sites and send people the link to here. I think that may be how Anna got here. I hope it helps them to be here as much as it has helped me!

    THANK YOU!!

    ~Jayme

    As a reference librarian
    I can add my perspective to this too! Google will give you the good, the bad and the ugly on all types of topics as we all know. I often times show my patrons how to use library databases. My working with ECAN now has gotten their website on our health database, and now our patrons can easily find information on EC from a "reliable" source. I know that we also have the American Cancer Society's websites listed there as well. As far as how I "stumbled upon" this website back in June: I googled the term "esophogeal FORUMS" and it popped up right away.

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