Optimistic survivors of Stage 3 and 4 adenocarcinoma?

Hello all, this is my first post. I am so moved by the posts I have read -- your stories of battling this terrible disease, and struggling with caring for loved ones who suffer from it. Here's my story: I'm a 49 year old female, married, with two kids (ages 15 and 9). Last June, I was diagnosed with Stage 3 adenocarcinoma of the esophagus. I was a very fit and healthy woman, a long distance runner, so this diagnosis was shocking and very surreal. I immediately underwent chemotherapy and radiation, then this past September, I had a minimally invasive esophajectomy, and 17 lymph nodes removed. I am recovering from the surgery, with the most difficult physically being getting used to a new digestive physiology that has decreased my quality of life. But I don't mean to sound ungrateful -- I am so thankful for each day I now have. As the doctors like to say nowadays, there is "no sign of disease." I am optimistic and hopeful that I can live many, many more years and see my children grow to adults, but realistically, who knows. I am looking for survivors who are beating the odds. Are you out there? How long have you been cancer-free? Can you offer some real hope to me? Blessings to each of you.
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Comments

  • llamp0922
    llamp0922 Member Posts: 40
    Hope!
    Hopefulsurvivor,

    I am a 4 1/2 year survivor of stage 3B inoperable squamous cell e.c. I was 38 and healthy when diagnosed, the mother of two, happily married and totally shocked. The road through treatment was very difficult. You can read my story by clicking on the about me tab. I have been NED since December 2007, and have just gotten great results from my 4/26/12 CT scans. I remember reading the statistics upon diagnosis and being fearful and concerned, but I always tried to believe that I would be one of the ones who made it. There are survivors in every cancer statistic. Why not me or you? Stay positive and believe! I have lived to see my son graduate from high school and head off to college. I have seen my daughter dress for the prom. I am grateful for those moments, and so, so many others.

    I don't think most survivors ever feel that they have ever totally beaten the odds. The diagnosis and fear is still quietly there, but there are people that have survived and thrive. Life, swallowing, and eating is never the same; taking each day for granted is never the same, either. Try to enjoy each day!

    Peace, Love & Positive Thoughts!
    Lisa
  • This comment has been removed by the Moderator
  • sandy1943
    sandy1943 Member Posts: 824
    Welcome Lisa, I was
    Welcome Lisa, I was diagnosed Nov. 2007 with stage 111 adenocarcinoma. I had chemo and surgery in May 2008. I am still cancer free. I know I can have a reoccurance,but I won't live in fear. Our time in this life is limited, so why worry.

    My quality of life is very good. There are some things that are different. The main complaint I have is sleeping on a wedge. Eating is pretty normal for me now. I don't eat as much as I did before, but I enjoy it as much as I ever did. I have had a few dilations, and my esophagus is still not completely dilated , but by paying attention to how I eat, I have no problems.

    You join me in being one of the rarities.This is more of a mans cancer than a womans, and it is a puzzle to me how I could have gotten it. My daughter is your age and it would have devistated me if it had been her and not me.

    We are lucky for the stage 111 diagnoses. Our odds are good. Enjoy the children and as you continue to get better, enjoy everyday that God gives you. My life is more precious than it was before.


    Keep us updated on your progress,
    Sandra
  • mardigras
    mardigras Member Posts: 215 Member
    Hello Hopeful
    Welcome to you!!
    How we need more survivors here.
    I am a carer and my husband was also diagnosed last summer with Stage 3 Ardenocarcinoma.
    I'm afraid that his tumour was huge and he was not able to have the MIE. Even so his
    operation on 29th February was successful as far as we know and they also removed 29 nodes during his esophajectomy. The closest of these nodes on biopsy proved to have cancer cells in them.
    He underwent three months of Chemo prior to his surgery.
    He is now rising to the challenge of his altered diet.
    We too are hopeful of a positive outcome, even though we know that the odds are not good.
    I will pray for you every day as I do for all the brave people on this site.
    May God Bless you.
    Love and hugs,
    Marci x
  • captdave
    captdave Member Posts: 153
    Hi, I'm not a long term
    Hi, I'm not a long term survivor but, I do consider myself a success story none the less. I was diagnosed with very very early adenocarcinoma in November of 2011. My diagnoses was so early I wasn't even staged. Anyway, I had a THE at the University of Washington from a Great surgeon Mike Mulligan. The pathology on my removed esophagus was no cancer found and a couple cant rule out cancer findings. This and the fact that the original cells were only found in the squamous layer of the esophagus I was declared cured, cancer free! My recovery from the surgery has been as my Doc says "stellar". I was back to work piloting boats exactly two months after the surgery. I am leading a fully normal life and feel like I'm 100 percent back to my pre-surgical self. So I consider myself a success story with EC. I also have two cousins who have had EC and both had THE's. One had stage four and ended up being a surgical candidate and he is now six years from his surgery. He also had the same great surgeon that I did. The other had very early stage and he is four years from his surgery. So there is hope and there are success stories all around you. live life and never take your eye off the prize! eat right exercise and live life to the fullest.

    Dave
  • hopefulsurvivor49
    hopefulsurvivor49 Member Posts: 30
    llamp0922 said:

    Hope!
    Hopefulsurvivor,

    I am a 4 1/2 year survivor of stage 3B inoperable squamous cell e.c. I was 38 and healthy when diagnosed, the mother of two, happily married and totally shocked. The road through treatment was very difficult. You can read my story by clicking on the about me tab. I have been NED since December 2007, and have just gotten great results from my 4/26/12 CT scans. I remember reading the statistics upon diagnosis and being fearful and concerned, but I always tried to believe that I would be one of the ones who made it. There are survivors in every cancer statistic. Why not me or you? Stay positive and believe! I have lived to see my son graduate from high school and head off to college. I have seen my daughter dress for the prom. I am grateful for those moments, and so, so many others.

    I don't think most survivors ever feel that they have ever totally beaten the odds. The diagnosis and fear is still quietly there, but there are people that have survived and thrive. Life, swallowing, and eating is never the same; taking each day for granted is never the same, either. Try to enjoy each day!

    Peace, Love & Positive Thoughts!
    Lisa

    Thank you
    I am so happy to hear from you. I, too, have tried to maintain a positive attitude. One of my best friends, a gastroenterologist who helped me navigate the treatment process, said from the very start: somebody has to be in the 20% and it might as well be you. These words have carried me through some rough times. Still, as I read more and more about EC, I can't help but get discouraged. So thank you so very much for responding with your success.
    Blessings to you and your family.
  • hopefulsurvivor49
    hopefulsurvivor49 Member Posts: 30
    unknown said:

    This comment has been removed by the Moderator

    Thank you
    Dear William,
    Thank you for your reply. I am very happy to hear of your 9 years anniversary! I, too, was very fortunate to be in a place (Boston) where I had an outstanding team of doctors, including my brilliant surgeon (Dr. Chris Morse at MGH). Every morning I wake up and thank God for the day. I struggle with the eating, but looking back to September, I am so much better than I was then.

    I will take a look at your page. Thank you for your inspiration.
  • hopefulsurvivor49
    hopefulsurvivor49 Member Posts: 30
    sandy1943 said:

    Welcome Lisa, I was
    Welcome Lisa, I was diagnosed Nov. 2007 with stage 111 adenocarcinoma. I had chemo and surgery in May 2008. I am still cancer free. I know I can have a reoccurance,but I won't live in fear. Our time in this life is limited, so why worry.

    My quality of life is very good. There are some things that are different. The main complaint I have is sleeping on a wedge. Eating is pretty normal for me now. I don't eat as much as I did before, but I enjoy it as much as I ever did. I have had a few dilations, and my esophagus is still not completely dilated , but by paying attention to how I eat, I have no problems.

    You join me in being one of the rarities.This is more of a mans cancer than a womans, and it is a puzzle to me how I could have gotten it. My daughter is your age and it would have devistated me if it had been her and not me.

    We are lucky for the stage 111 diagnoses. Our odds are good. Enjoy the children and as you continue to get better, enjoy everyday that God gives you. My life is more precious than it was before.


    Keep us updated on your progress,
    Sandra

    Thank you
    Dear Sandra,
    I am happy to know your success story. When I heard how rare this cancer is for women, I was astounded. I'm grateful to "meet" another woman with the adeno form of EC.

    Thank you for your encouragement. I hope to be able to enjoy eating again some day! A month or so ago, I was watching a travel show on PBS, and when the host cracked his spoon into his creme brulee in Paris I actually burst into tears thinking I would never be able to eat that again.

    I thank God every day for the day, and hope for many more. I appreciate your support.
  • hopefulsurvivor49
    hopefulsurvivor49 Member Posts: 30
    mardigras said:

    Hello Hopeful
    Welcome to you!!
    How we need more survivors here.
    I am a carer and my husband was also diagnosed last summer with Stage 3 Ardenocarcinoma.
    I'm afraid that his tumour was huge and he was not able to have the MIE. Even so his
    operation on 29th February was successful as far as we know and they also removed 29 nodes during his esophajectomy. The closest of these nodes on biopsy proved to have cancer cells in them.
    He underwent three months of Chemo prior to his surgery.
    He is now rising to the challenge of his altered diet.
    We too are hopeful of a positive outcome, even though we know that the odds are not good.
    I will pray for you every day as I do for all the brave people on this site.
    May God Bless you.
    Love and hugs,
    Marci x

    Thank you
    Dear Marci,
    Thank you for your note. I am so sorry that your husband is going through this and coping with this dreadful cancer. I will pray for his health and for your strength as caregiver.
    Blessings to you both.
  • hopefulsurvivor49
    hopefulsurvivor49 Member Posts: 30
    captdave said:

    Hi, I'm not a long term
    Hi, I'm not a long term survivor but, I do consider myself a success story none the less. I was diagnosed with very very early adenocarcinoma in November of 2011. My diagnoses was so early I wasn't even staged. Anyway, I had a THE at the University of Washington from a Great surgeon Mike Mulligan. The pathology on my removed esophagus was no cancer found and a couple cant rule out cancer findings. This and the fact that the original cells were only found in the squamous layer of the esophagus I was declared cured, cancer free! My recovery from the surgery has been as my Doc says "stellar". I was back to work piloting boats exactly two months after the surgery. I am leading a fully normal life and feel like I'm 100 percent back to my pre-surgical self. So I consider myself a success story with EC. I also have two cousins who have had EC and both had THE's. One had stage four and ended up being a surgical candidate and he is now six years from his surgery. He also had the same great surgeon that I did. The other had very early stage and he is four years from his surgery. So there is hope and there are success stories all around you. live life and never take your eye off the prize! eat right exercise and live life to the fullest.

    Dave

    Thank you
    Dear Capt. Dave,
    Thank you for sharing your success story -- and those of your cousins -- with me. I am uplifted to hear there is hope to beat this cancer. Continued good health and blessings to you and your family.
  • Thank you
    Dear William,
    Thank you for your reply. I am very happy to hear of your 9 years anniversary! I, too, was very fortunate to be in a place (Boston) where I had an outstanding team of doctors, including my brilliant surgeon (Dr. Chris Morse at MGH). Every morning I wake up and thank God for the day. I struggle with the eating, but looking back to September, I am so much better than I was then.

    I will take a look at your page. Thank you for your inspiration.

    This comment has been removed by the Moderator
  • hopefulsurvivor49
    hopefulsurvivor49 Member Posts: 30
    unknown said:

    This comment has been removed by the Moderator

    Brilliant Surgeon
    Hi William (BTW, that is my 9 year old son's name!),
    Yes, you have identified my surgeon, Dr. Christopher Morse. I did not realize he had trained with Luketich. Morse is not only a gifted surgeon, he is caring, and a straight shooter. My husband and I often joke about how even when Chris is saying something difficult to hear, he says it with such gentle conviction that you know it will be true, and you know you can deal with it. To anyone looking for medical help in the Boston area, the rest of my team, also at MGH, is equally amazing: Dr. Alice Shaw (oncology), her Fellow, Dr. Elizabeth Stover (she rotates b/w MGH and Dana Farber now), and my radiologist Dr. Willers.

    Thanks for the suggestion about food. I forgot that drinking separately is best. I will get back to that. Yes, sugar is a nightmare for me right now.
  • BobHaze
    BobHaze Member Posts: 161 Member

    Thank you
    Dear William,
    Thank you for your reply. I am very happy to hear of your 9 years anniversary! I, too, was very fortunate to be in a place (Boston) where I had an outstanding team of doctors, including my brilliant surgeon (Dr. Chris Morse at MGH). Every morning I wake up and thank God for the day. I struggle with the eating, but looking back to September, I am so much better than I was then.

    I will take a look at your page. Thank you for your inspiration.

    Chris Morse
    I, too, had an MIE performed by Chris Morse last September. He’s both a great surgeon and a great guy…and a life long sailor, as am I, so I really liked him when I met him. I was referred to Chris by Dr. Bill Brugge, who is the head of the Endoscopy clinic at Mass General and who did my EUS and staged my cancer. But then I did my homework, which included this board, and when I “heard” William singing the praises of Dr. Luketich and saw that Chris had trained under him I was sold. When we first met him we personally liked him, but I was also impressed with his compassion and his very human approach, which is not always the case with doctors in large hospitals.

    My surgery was just over 7 months ago and I eat almost everything I used to eat, just not as much at a sitting. The one thing I have to be careful of, of course, is sugar, but even that isn’t a problem in limited doses as long as I already have something in my stomach…or, as Judy calls it (and I love this!), my stomophagus. Imodium is part of my life now, but that’s a small price to pay. As William has often said, it’s better than having cancer!

    Granted, I was Stage 1 and didn’t have any chemo or rads, but right now I have to say life is good, all things considered. You have a lot to look forward to, and with the help of people like Chris Morse and the support of your loved ones and the good folks on this board, you’ll be in good hands.

    FEC,
    Bob
    T1aN0M0
    Dx 8/3/11
    MIE 9/23/11
  • hopefulsurvivor49
    hopefulsurvivor49 Member Posts: 30
    BobHaze said:

    Chris Morse
    I, too, had an MIE performed by Chris Morse last September. He’s both a great surgeon and a great guy…and a life long sailor, as am I, so I really liked him when I met him. I was referred to Chris by Dr. Bill Brugge, who is the head of the Endoscopy clinic at Mass General and who did my EUS and staged my cancer. But then I did my homework, which included this board, and when I “heard” William singing the praises of Dr. Luketich and saw that Chris had trained under him I was sold. When we first met him we personally liked him, but I was also impressed with his compassion and his very human approach, which is not always the case with doctors in large hospitals.

    My surgery was just over 7 months ago and I eat almost everything I used to eat, just not as much at a sitting. The one thing I have to be careful of, of course, is sugar, but even that isn’t a problem in limited doses as long as I already have something in my stomach…or, as Judy calls it (and I love this!), my stomophagus. Imodium is part of my life now, but that’s a small price to pay. As William has often said, it’s better than having cancer!

    Granted, I was Stage 1 and didn’t have any chemo or rads, but right now I have to say life is good, all things considered. You have a lot to look forward to, and with the help of people like Chris Morse and the support of your loved ones and the good folks on this board, you’ll be in good hands.

    FEC,
    Bob
    T1aN0M0
    Dx 8/3/11
    MIE 9/23/11

    Small World
    Hi Bob,
    Congratulations to you! I am so happy to hear more good news. Small world -- I saw Bill Brugge today (for a follow-up). He did my staging, and he is also a terrific doctor and great guy. We are fortunate.

    I love Judy's term! I may borrow that one!
  • llamp0922
    llamp0922 Member Posts: 40

    Small World
    Hi Bob,
    Congratulations to you! I am so happy to hear more good news. Small world -- I saw Bill Brugge today (for a follow-up). He did my staging, and he is also a terrific doctor and great guy. We are fortunate.

    I love Judy's term! I may borrow that one!

    A very small world, indeed!
    I was at MGH on Monday getting great news from my team. I have seen Alice Shaw when my oncologist Jennifer Temel was away. My radiation onco was Noah Choi and the surgeon was John Wain. The medical care, from nursing to residents to fellows to oncologists was top-notch. It seems that there is a growing group of us MGH folks here!
  • Donna70
    Donna70 Member Posts: 852 Member

    Thank you
    Dear Capt. Dave,
    Thank you for sharing your success story -- and those of your cousins -- with me. I am uplifted to hear there is hope to beat this cancer. Continued good health and blessings to you and your family.

    2yr 5 months surviving and thriving
    Dear Hopeful,
    As others have attested to, there are many survivors here and we are living fully functional lives. I was Stage III squamous cell with one positive lymph node, had the full chemo and radiation and then the open esphagectomy with 3 incisions, had one positive node at surgery, did post op chemo. Now have been having all negative CT scans. Did have some bumps after all this, it took about 7 months before I started feeling normal. Had a long time on the j tube and some lung damage but I am happy and doing well. You will too!! In fact, I am doing too well in the food department, it took about almost a year from surgery for me to gain any substantial weight, now I have to watch it. So, your eating will improve, it just takes time and patience. This is the place where hope is nourished and encouraged and everyone here will answer questions and give any input that they think you can use. As everyone told me, just be patient, one step at a time. Welcome to our board!!
    Donna70
  • TinasVoice
    TinasVoice Member Posts: 8
    Very hopeful reading about survivors...
    Hi,
    It helps to hear from other survivors. I am scheduled for surgery next week, May 8th. My story is complex. I will have an esophagectomy and laryngectomy at the same time. My anatomy complicates everything, as you can imaging reading my story. I'm 51, and this also came as quite a surprise in the beginning of January 2012. I was strong, did not have any of the typical symptoms, exercising several days a week at the gym, feeling fine. I remain positive and strong, I have been able to eat and maintain my weight. It will be a new
    world for me next week, I will have so much to learn. I welcome you and everyone in these discussions to continue this well needed communication.

    Tina
  • hopefulsurvivor49
    hopefulsurvivor49 Member Posts: 30

    Very hopeful reading about survivors...
    Hi,
    It helps to hear from other survivors. I am scheduled for surgery next week, May 8th. My story is complex. I will have an esophagectomy and laryngectomy at the same time. My anatomy complicates everything, as you can imaging reading my story. I'm 51, and this also came as quite a surprise in the beginning of January 2012. I was strong, did not have any of the typical symptoms, exercising several days a week at the gym, feeling fine. I remain positive and strong, I have been able to eat and maintain my weight. It will be a new
    world for me next week, I will have so much to learn. I welcome you and everyone in these discussions to continue this well needed communication.

    Tina

    Stay strong
    Dear Tina,
    Your fitness will help you so much through recovery from surgery. It sounds from what I read on your profile that you have squamous EC (not adeno -- different parts of the esophagus, different tissue, different treatments, prognosis, etc.), so I don't know anything about what to expect from your upcoming surgery, but I do know that being otherwise fit and strong will help you recover. Are you happy with your surgeon and doctors?

    I am happy to hear you are staying strong and positive -- both are so important to treatment and recovery.

    Blessings to you.
  • JReed
    JReed Member Posts: 428
    BobHaze said:

    Chris Morse
    I, too, had an MIE performed by Chris Morse last September. He’s both a great surgeon and a great guy…and a life long sailor, as am I, so I really liked him when I met him. I was referred to Chris by Dr. Bill Brugge, who is the head of the Endoscopy clinic at Mass General and who did my EUS and staged my cancer. But then I did my homework, which included this board, and when I “heard” William singing the praises of Dr. Luketich and saw that Chris had trained under him I was sold. When we first met him we personally liked him, but I was also impressed with his compassion and his very human approach, which is not always the case with doctors in large hospitals.

    My surgery was just over 7 months ago and I eat almost everything I used to eat, just not as much at a sitting. The one thing I have to be careful of, of course, is sugar, but even that isn’t a problem in limited doses as long as I already have something in my stomach…or, as Judy calls it (and I love this!), my stomophagus. Imodium is part of my life now, but that’s a small price to pay. As William has often said, it’s better than having cancer!

    Granted, I was Stage 1 and didn’t have any chemo or rads, but right now I have to say life is good, all things considered. You have a lot to look forward to, and with the help of people like Chris Morse and the support of your loved ones and the good folks on this board, you’ll be in good hands.

    FEC,
    Bob
    T1aN0M0
    Dx 8/3/11
    MIE 9/23/11

    Stomophagus!
    Hah! That is a great word for what some of you now have. I cannot take credit for that word though. Someone and I'm sorry I don't remember who, called it that on a post here awhile back and I liked it too. It should be in the dictionary because it perfectly describes your new plumbing.

    Hugs and FEC,
    Judy
  • mabailey48
    mabailey48 Member Posts: 6
    Lots of hope!
    I was a 52 year old male in seemingly perfect health in early 2004 when I went in for a routine checkup and admitted to having trouble swallowing breakfast every day. I was diagnosed with stage 4 adenocarcinoma. My tumor was as big as both fists together and I had widespread lymph node involvement. They told me it was too late for anything but palliative treatment but we continued looking for a clinical trial that would accept me.

    We got into the Winship institute at Emory U in Atlanta and after 6 weekly chemo cycles and the max radiation I could take, the surgeon said he would give it a try. I had radical surgery in March of 2004. My weight bottomed out at 140 (down from 220). But slowly I began to be able to swallow and every day I got a little stronger.

    It has been 8 years now and I'm as strong as a horse again. My weight is 170. My diet is not limited in any way except for volume. I eat about 6 times a day. I still have occasional dumping and rare vomiting but other than that I'm good as new.

    Statistics are just that. No one knows who will survive and who won't. My advice to you is simple: do not fear dominate you. Concentrate on others, not yourself. Smile and have fun as if you were never sick. Have courage. If it seems to be killing you, look the cancer square in the eye and tell it, you may kill my body but you can't kill me. My soul, my personality, my individuality is indestructible. If you go out, go out like a warrior. Make people remember you as a happy warrior who never gave up, never complained, and never blamed God. Don't be angry, be brave. You can beat this.