My 36 yr old brother has just been diagnosed with Esophageal Cancer

Faith11
Faith11 Member Posts: 10
edited March 2014 in Esophageal Cancer #1
Hi all,

My brother (36 years old) was just diagnosed this past Monday (6/14) with Esophageal Cancer. I am in total shock as I didn't think it could happen to people so young and especially that it could ever happen to anyone in my family (if you know what I mean).
I have been trying to read up on as much information that I can locate about the topic, and I would appreciate any helpful information/tips, inspiring stories etc. I am prepared to help him fight this battle.

I wasn't able to be at the doctor's appointment when he was first given the news.
I believe that he doesn't have all the information about his diagnosis that he should have before he decides on what his treatment should be. I was trying to decipher and understand the doctor's report that was given to him. The words "adenocarcinoma" and also "Barett's Esophagus" were mentioned. He was told that he has a 5 mm lump in the lower third of his Esophagus and that he would need to be scheduled for surgery ASAP. We do not know what stage of cancer he is in. I know he needs to act quickly but I feel as though we need to be better informed of his diagnosis before we begin our battle.

Thanking you all in advance for your information,

Flor
«1

Comments

  • iansmom
    iansmom Member Posts: 25
    #2
    Don't believe the statistics...
    Hi Faith,
    First off... don't believe the statistics on this disease...
    I think you will find that you came to the right place.
    There are a lot of wonderful people here with tons of knowledge, support and guidence.
    My 22 year old son has EC and Mikesmom's son is only a little older...we both have found helpful information and support here and you will too. Keep your faith and courage up. Don't be afraid to ask questions. You are already in my prayers.
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • unclaw2002
    unclaw2002 Member Posts: 599
    #5
    Flor,
    I echo what the others
    Flor,

    I echo what the others have said.

    Also, I would recommend that if at all possible you should investigate getting treatment at a NIH recognized cancer center that specializes in Esophageal Cancer. This is a rare cancer that requires many different approches than many other cancers, it is rare and since there are on average around 15,000 new cases a year that means that many patients are spread all over the US and with this cancer you want someone who is a specialist and has seen the many effects and results of the treatment for EC. Also it seems that this cancer needs to be approached differently, because while treatment can effect eating and nutrition in other cancers --- it is the cancer and tumor that makes eating and nutrition so difficult for many patients. Many, my father included could not eat because of the tumor in the esophagous and then during treatment the radiation can cause problems.

    Given your brother's age and assumed good health I would probably urge an agreesive approach in treatment. But it is essential that he get a second opinion, consider his options carefully, investigate the treatment and also the surgery options, see what clinical trials might be available, travel to get treatment and surgery if at all possible and finances and insurance allow it. For lodging there are Lodges run by the ACS that offer free housing near major cancer centers for folks (patient and caregiver) who travel to obtain treatment and surgery. There are even hotels that give away free rooms.

    Ak yourself do you want people who are specialists and treat many patients with EC every day, or a physician who may see one person a month with EC or do surgery several times a year. I can tell you I want someone who has seen it all, done it all, and has extensive experience on the many bumps in the road for EC patients. Seek the absolute best treatment --- the rest will fall into place. You brother has alot of life left to live and we are all here to help and support as best as we can.

    Tell us where he lives and where he is seeking treatment. Look forward to hearing from you.

    Best,
    Cindy

    Best,
    Ciny
  • K_ann1015
    K_ann1015 Member Posts: 500
    #6
    we are all in this together
    Hi Flor
    I know you must still be in shock and you have gotten a lot of good advice above---just wanted to let you know that we all here have been through what you are going through. But it is never routine! Please keep sharing and coming back---it helps to have some where to vent or to ask questions. I am repeating others---but strongly suggest knowing the STAGE before agreeing to surgery. The nature of the lymph drainage in the esophageal area makes it a type of cancer that can spread easy thru the wall and to surrounding lymph nodes. This is not the end of the world, but why, often chemo & radiation is done to knock back the cancer BEFORE surgery.
    Also, another website that has alot of information is ECAN.org (Esophageal Cancer Action Network).
    For me, it is my dad that is battling EC right now. He has been thru chemo radiation surgery & clean up chemo (almost done with this)--and is doing well. Being scared is SO normal---but don't let it get you down---this disease can be beat!
    Kim
  • Faith11
    Faith11 Member Posts: 10
    #7
    iansmom said:

    Don't believe the statistics...
    Hi Faith,
    First off... don't believe the statistics on this disease...
    I think you will find that you came to the right place.
    There are a lot of wonderful people here with tons of knowledge, support and guidence.
    My 22 year old son has EC and Mikesmom's son is only a little older...we both have found helpful information and support here and you will too. Keep your faith and courage up. Don't be afraid to ask questions. You are already in my prayers.

    Thanks for your reply iansmom
    Hi:
    Thank you so much for your response.
    I was looking at those statistics and it was making me all upset but I just keep telling myself that someone has to be on the other side of those numbers and why can't it be my brother or your son or anybody else on here. I will listen to you and not believe those statistics.
    I've already come in contact with the many wonderful people you talk about. Thank God for this site.
    oh wow, now I see EC doesn't discriminate. Your son is soo young, what step in the process is he in?? May God Bless him. I am def. putting everyone here in my prayers. Thank you soo much for making me feel welcome.
  • Faith11
    Faith11 Member Posts: 10
    #8
    unknown said:

    This comment has been removed by the Moderator

    Thanks Sherri
    I've taken a few deep breaths, I know I don't have anytime to be depressed, I must continue forward and help my brother battle. After reading all the reponses I received I realized I really am not very well informed. I do not know the answers to your questions about the staging and whether it has spread elsewhere. I am trying to find out about this. My SIL tells me that he is scheduled for another scope on Tuesday 6/22, and I plan to be there with him to try and get some answers. I will let you all know what happens on tuesday and what we're told. I know everyone is suggesting a second opinion but I'm thinking the insurance he has would not be willing to pay for a second opinion, no?

    Once again Thanks for the support and response.
  • Faith11
    Faith11 Member Posts: 10
    #9
    unknown said:

    This comment has been removed by the Moderator

    Thank you soo much for all the helpful information
    Hi:

    Thank you so very much for bringing me up to speed with everything. The information you have provided me with is very helpful.

    My brother has actually been scheduled for a second endoscopy on Tuesday 6/22. Although he is a big boy, I do plan on accompanying him to this appointment to make sure we get all the answers we need to know. I will update you with whatever information I am given. We live in Orlando. so if you know of any great doctor's here. Let us know.

    Thanks
    Flor
  • Faith11
    Faith11 Member Posts: 10
    #10
    unclaw2002 said:

    Flor,
    I echo what the others
    Flor,

    I echo what the others have said.

    Also, I would recommend that if at all possible you should investigate getting treatment at a NIH recognized cancer center that specializes in Esophageal Cancer. This is a rare cancer that requires many different approches than many other cancers, it is rare and since there are on average around 15,000 new cases a year that means that many patients are spread all over the US and with this cancer you want someone who is a specialist and has seen the many effects and results of the treatment for EC. Also it seems that this cancer needs to be approached differently, because while treatment can effect eating and nutrition in other cancers --- it is the cancer and tumor that makes eating and nutrition so difficult for many patients. Many, my father included could not eat because of the tumor in the esophagous and then during treatment the radiation can cause problems.

    Given your brother's age and assumed good health I would probably urge an agreesive approach in treatment. But it is essential that he get a second opinion, consider his options carefully, investigate the treatment and also the surgery options, see what clinical trials might be available, travel to get treatment and surgery if at all possible and finances and insurance allow it. For lodging there are Lodges run by the ACS that offer free housing near major cancer centers for folks (patient and caregiver) who travel to obtain treatment and surgery. There are even hotels that give away free rooms.

    Ak yourself do you want people who are specialists and treat many patients with EC every day, or a physician who may see one person a month with EC or do surgery several times a year. I can tell you I want someone who has seen it all, done it all, and has extensive experience on the many bumps in the road for EC patients. Seek the absolute best treatment --- the rest will fall into place. You brother has alot of life left to live and we are all here to help and support as best as we can.

    Tell us where he lives and where he is seeking treatment. Look forward to hearing from you.

    Best,
    Cindy

    Best,
    Ciny

    Thank you Cindy
    You are absolutely right Cindy. Thank you for your response.
  • Faith11
    Faith11 Member Posts: 10
    #11
    K_ann1015 said:

    we are all in this together
    Hi Flor
    I know you must still be in shock and you have gotten a lot of good advice above---just wanted to let you know that we all here have been through what you are going through. But it is never routine! Please keep sharing and coming back---it helps to have some where to vent or to ask questions. I am repeating others---but strongly suggest knowing the STAGE before agreeing to surgery. The nature of the lymph drainage in the esophageal area makes it a type of cancer that can spread easy thru the wall and to surrounding lymph nodes. This is not the end of the world, but why, often chemo & radiation is done to knock back the cancer BEFORE surgery.
    Also, another website that has alot of information is ECAN.org (Esophageal Cancer Action Network).
    For me, it is my dad that is battling EC right now. He has been thru chemo radiation surgery & clean up chemo (almost done with this)--and is doing well. Being scared is SO normal---but don't let it get you down---this disease can be beat!
    Kim

    Thanks Kim
    Thank you soo much Kim for making me feel welcome. I will def. be coming back often with my questions.
    Praying for your dad!!!

    I believe it can be beat and it will be beat. Thanks.
  • dsmasters
    dsmasters Member Posts: 22
    #12
    I understand the shock
    Flor, I understand yours and his shock as I am only 34 years old and I was diagnosed back in September. I went through chemo and radiation in December and just went through surgery 2 weeks ago. It sucks but it is beatable. He is young like I am and therefore has a good chance at beating it.

    You/he can check out my story of my battle here - http://www.danmasters.net/cat/health/cancer
  • Unknown
    Unknown
    #13
    Faith11 said:

    Thank you soo much for all the helpful information
    Hi:

    Thank you so very much for bringing me up to speed with everything. The information you have provided me with is very helpful.

    My brother has actually been scheduled for a second endoscopy on Tuesday 6/22. Although he is a big boy, I do plan on accompanying him to this appointment to make sure we get all the answers we need to know. I will update you with whatever information I am given. We live in Orlando. so if you know of any great doctor's here. Let us know.

    Thanks
    Flor

    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #14
    Faith11 said:

    Thanks Kim
    Thank you soo much Kim for making me feel welcome. I will def. be coming back often with my questions.
    Praying for your dad!!!

    I believe it can be beat and it will be beat. Thanks.

    Welcome
    Hi Faith to you and your brother. Welcome to our ec family! I was a caregiver for my dad. He passed away in March after a 16th month battle with ec with mets to the liver. I agree with the others that a 2nd opinion is in order. You do not want to jump into surgery right away without finding out about staging, chemo, and radiation options. MD Anderson in Orlando is an excellent place. Many from here have gone there. Ask a lot of questions, write down the answers. Stay positive. The mind set is half the battle. Definitely go with him to all appointments and treatments. He will need the support, and another set of eyes and ears. Pray a lot! Keep your faith. Keep us posted. We will be praying for you.
    Tina
  • leechet
    leechet Member Posts: 2
    #15
    Sounds Familiar
    On June 16th 2009 I was diagnosed with the same...same size....same place..By July 15th I was receiving chemo treatments to shrink the tumor with the plan of having it surgically removed, the reason to shink it was to make the surrounding area removal minimal, take less esophagus and stomach at surgery. I did 42 days of chemo with a week off at the halfway point. Then August 31st I stopped the chemo, September 14th had surgery, they removed 1/3 of my stomach and 1/3 of my esophagus. After the surgery I completed a total of 142 days of chemo ending 2/1/10. It's a long road but very survivable. Your brother is in the very early stages as I was and his servival is almost certain. I used to think I was superman, now I know I'm not, but I can tell you the most important thing to me was the positive energy I received from my friends,family and co workers. If someone felt the need to tell me horror stories I let them know in no uncertain terms they needed to take that crap somewhere else. He will make it.
  • Anj_and_Rob
    Anj_and_Rob Member Posts: 29
    #16
    My husband is 36 too
    Sorry to hear about your husband, my husband was diagnosed in February this year stage T3N1M0. We completed chemo and radiation and are set for surgery on June 30th to have his esophagus removed. We have been living every moment to the fullest and remain hopeful due to his age. Good luck and welcome, this is a great place for information.
  • daughter kate
    daughter kate Member Posts: 7
    #17
    leechet said:

    Sounds Familiar
    On June 16th 2009 I was diagnosed with the same...same size....same place..By July 15th I was receiving chemo treatments to shrink the tumor with the plan of having it surgically removed, the reason to shink it was to make the surrounding area removal minimal, take less esophagus and stomach at surgery. I did 42 days of chemo with a week off at the halfway point. Then August 31st I stopped the chemo, September 14th had surgery, they removed 1/3 of my stomach and 1/3 of my esophagus. After the surgery I completed a total of 142 days of chemo ending 2/1/10. It's a long road but very survivable. Your brother is in the very early stages as I was and his servival is almost certain. I used to think I was superman, now I know I'm not, but I can tell you the most important thing to me was the positive energy I received from my friends,family and co workers. If someone felt the need to tell me horror stories I let them know in no uncertain terms they needed to take that crap somewhere else. He will make it.

    How are you feeling now?
    My Dad it sounds has had the same surgery as you. Did you experience nausea? if you did how long did it last?

    He was operated on 4/10 and on a Jtube and still very nauseous all the time and can't eat much, he seems to not be increasing the amounts from a teaspoon to 1/4 cup and up.
    If he does not eat every 2 hours he gets more nauseous and then vomits white foam.

    He is just plain tired of it and still has one more round of chemo.
  • Faith11
    Faith11 Member Posts: 10
    #18
    unknown said:

    This comment has been removed by the Moderator

    Great to know you're in orlando too
    Hey Sherri: I've only heard great things about the Anderson Cancer Center in Orlando but unfortunately due to my brother's insurance, he will not be able to get treated there.
  • Faith11
    Faith11 Member Posts: 10
    #19
    Tina Blondek said:

    Welcome
    Hi Faith to you and your brother. Welcome to our ec family! I was a caregiver for my dad. He passed away in March after a 16th month battle with ec with mets to the liver. I agree with the others that a 2nd opinion is in order. You do not want to jump into surgery right away without finding out about staging, chemo, and radiation options. MD Anderson in Orlando is an excellent place. Many from here have gone there. Ask a lot of questions, write down the answers. Stay positive. The mind set is half the battle. Definitely go with him to all appointments and treatments. He will need the support, and another set of eyes and ears. Pray a lot! Keep your faith. Keep us posted. We will be praying for you.
    Tina

    Thank you Tina
    Sorry for your loss. I'm doing my best to stay positive and we have definately been praying a lot. Thank you for your wonderful words of encouragement. I will keep you all posted.
  • Faith11
    Faith11 Member Posts: 10
    #20
    dsmasters said:

    I understand the shock
    Flor, I understand yours and his shock as I am only 34 years old and I was diagnosed back in September. I went through chemo and radiation in December and just went through surgery 2 weeks ago. It sucks but it is beatable. He is young like I am and therefore has a good chance at beating it.

    You/he can check out my story of my battle here - http://www.danmasters.net/cat/health/cancer

    Wow, Dan you are an inspiration
    I read your blog and let me tell you that you're one strong person. You've been through soo much (battling with your health and the insurance situation)and yet you sound so incredibly strong. I'll be sending over any questions I may have. Also, I'm going to be praying for you. Keep battling and I know you'll be just fine.
  • Unknown
    Unknown
    #21
    daughter kate said:

    How are you feeling now?
    My Dad it sounds has had the same surgery as you. Did you experience nausea? if you did how long did it last?

    He was operated on 4/10 and on a Jtube and still very nauseous all the time and can't eat much, he seems to not be increasing the amounts from a teaspoon to 1/4 cup and up.
    If he does not eat every 2 hours he gets more nauseous and then vomits white foam.

    He is just plain tired of it and still has one more round of chemo.

    This comment has been removed by the Moderator

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