For a friend

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merrywinner
merrywinner Member Posts: 626 Member
edited March 2014 in Esophageal Cancer #1
Hello to all. I am a frequent visitor to the lymphoma area on this site and the folks there have been a Godsend to me. Now I want to help a friend and I knew right where to go. She just called to tell me that her husband had a biopsy done and the results show adeno esophageal cells. His next step is a PET scan. I don't know all of his symptoms but has had years of the reflux stuff that has been worse of late and has lost 10 pounds recently. I know it is early and all the tests are not completed but how can I help them? Thanks in advance. Mary

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  • timp
    timp Member Posts: 14
    #2
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    I would suggest you inform
    I would suggest you inform the caregiver about this web site. There is much helpful information available here. Things tend to happen pretty fast after an EC diagnosis, and often there is not a lot of information available to the caregiver about what is going on, and especially about treatment options that might be considered. And not all hospitals and doctors are up to speed on dealing with this disease. So one of the first tasks to find out if you are dealing with medical personnel who are familiar with this disease and its treatment. You will find help in that regard on this site as well.

    With respect to the patient, the information available here might be a bit much for them to handle at first. The caregiver will need to give that careful consideration.

    Best of Luck to you.

    Timp
  • unclaw2002
    unclaw2002 Member Posts: 599
    #3
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    Encourage the caregiver to
    Encourage the caregiver to visit this site --- or you could go through some of the posts on this board and compile information for your friend and try to go through this with the caregiver to your friend. Some people want to know everything and learn all they can about their cancer, others want to let others take the lead because they would rather not know and of course others fall somewhere inbetween. Only you will know where your friend is --- be sensitive and provide information as needed. You will probably want to share this site with your friend's caregiver.

    Esophageal cancer is a rare cancer with some particular aspects that make it hard to treat and requires a certain focus. I would want to make sure that I am at a cancer center that specializes in the treatment of esophageal cancer and that the team of doctors I am working with have a special interest in esophageal cancer. It is critical to get an accurate staging of the cancer, and have someone experienced in taking and reading Esophageal scans, ultrasounds, and other tests. Treatment options are specific as to stage, health of the patient and other existing medical complications --- getting the most current and experienced team working on your behalf can make the difference between life and perhaps death. The statistics are dismal and you can't focus on those --- ask many questions. Staging of the cancer, what it means, have them show your friend pictures, his scans, get options, get a second opinion, find out what clinical trials your friend might be eligible for, quality of life issues, feeding issues (which by the way are especially difficult for EC patients, chemo/radiation therapy before or after surgery, only surgery no surgery option. Your friend can be as involved or passive as they are comfortable being in directing their treatment. Again there is no right answer everything is so individual.

    The are so many questions to ask, write them down as you think of them and bring the notebook to appointments so you can write down the answers (I noticed as chemo went on my Dad had "brain fog" and couldn't remember some things . This is an agressive cancer and there are many success stories on this site - but there is much heartache as well and one area of heartache for many caregivers is watching a loved one who is being treated by indifferent, inexperienced or worse medical professionals who really have no expertise with this type of cancer.
  • merrywinner
    merrywinner Member Posts: 626 Member
    #4
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    unclaw2002 said:

    Encourage the caregiver to
    Encourage the caregiver to visit this site --- or you could go through some of the posts on this board and compile information for your friend and try to go through this with the caregiver to your friend. Some people want to know everything and learn all they can about their cancer, others want to let others take the lead because they would rather not know and of course others fall somewhere inbetween. Only you will know where your friend is --- be sensitive and provide information as needed. You will probably want to share this site with your friend's caregiver.

    Esophageal cancer is a rare cancer with some particular aspects that make it hard to treat and requires a certain focus. I would want to make sure that I am at a cancer center that specializes in the treatment of esophageal cancer and that the team of doctors I am working with have a special interest in esophageal cancer. It is critical to get an accurate staging of the cancer, and have someone experienced in taking and reading Esophageal scans, ultrasounds, and other tests. Treatment options are specific as to stage, health of the patient and other existing medical complications --- getting the most current and experienced team working on your behalf can make the difference between life and perhaps death. The statistics are dismal and you can't focus on those --- ask many questions. Staging of the cancer, what it means, have them show your friend pictures, his scans, get options, get a second opinion, find out what clinical trials your friend might be eligible for, quality of life issues, feeding issues (which by the way are especially difficult for EC patients, chemo/radiation therapy before or after surgery, only surgery no surgery option. Your friend can be as involved or passive as they are comfortable being in directing their treatment. Again there is no right answer everything is so individual.

    The are so many questions to ask, write them down as you think of them and bring the notebook to appointments so you can write down the answers (I noticed as chemo went on my Dad had "brain fog" and couldn't remember some things . This is an agressive cancer and there are many success stories on this site - but there is much heartache as well and one area of heartache for many caregivers is watching a loved one who is being treated by indifferent, inexperienced or worse medical professionals who really have no expertise with this type of cancer.

    Thank you!
    I appreciate the advice and info from both of you. It is very early days for them but I know from my own recent experience with Non Hodgkin's Lymphoma things can ramp up pretty quickly and in the case of EC probably even quicker. I feel at this point she is probably not ready for this site as she told me she should be researching this illness but just can't bring herself to do it yet. Her husband is very quiet and withdrawn since receiving his diagnosis. All normal as my own experience is recent and I will never forget those early days. I will gradually pass on the info to her and I am sure she will appreciate this site as much as I do. Thank you again for your time and advice. Mary
  • Unknown
    Unknown
    #5
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    merrywinner said:

    Thank you!
    I appreciate the advice and info from both of you. It is very early days for them but I know from my own recent experience with Non Hodgkin's Lymphoma things can ramp up pretty quickly and in the case of EC probably even quicker. I feel at this point she is probably not ready for this site as she told me she should be researching this illness but just can't bring herself to do it yet. Her husband is very quiet and withdrawn since receiving his diagnosis. All normal as my own experience is recent and I will never forget those early days. I will gradually pass on the info to her and I am sure she will appreciate this site as much as I do. Thank you again for your time and advice. Mary

    This comment has been removed by the Moderator
  • merrywinner
    merrywinner Member Posts: 626 Member
    #6
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    unknown said:

    This comment has been removed by the Moderator

    Thank you all!
    Your information has been extremely helpful. My friends husband had a CT scan and the preliminary results show no liver or lymph node involvement. They feel and probably are very lucky. They told them they were not finished staging it yet. My friend was finally able to hop in the drivers seat and take charge. They will see a surgeon and an oncologist tomorrow but she has made an appointment for a second opinion at Mayo Clinic Rochester and they are moving quickly. She has began amassing all of his records, slides etc. I feel she will be in good hands at Mayo. Thanks again. Mary

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