1 year so far.....whats next?

scottdd69
scottdd69 Member Posts: 2
in Esophageal Cancer #1

its been one year since my surgery i had stage three did the two rounds of chemo and the surgery which wascextremely hard because after it they found a leak and had to go back in all with in a 24hr period i spent 21 days in icu got discharged did follow up chemo and last month all my scans came back negative im fully retired at 44 and dont like it i was a machine repairman and just cant physically do it any more so my question is what do i have to look forward to does it usually come back is there a good chance to live ten or more years just looking for some answers be frank dont worry about it tell it the way it is thanks

Comments

  • Christine135
    Christine135 Member Posts: 71
    #2
    Hang in there

    Hi Scott,

    My husband was diagnosed April 5th, a day before his 57th birthday with escophageal cancer. On August 21st, he had surgery to remove his entir eshophagus as there was a tumor at the end of the esophagus where it met the stomach. We are only 8 months after surgery and I will not lie for as you know it is a long and hard road. In all honesty, there is no crystal ball that will tell us how things will be. It is one day at a time. My husband was like you, active, owns his business and was a competitive rower. In many ways, I think that has been harder on my husband than the surgery because he is realizing his life has changed and changed forever. 

    There is no guarantee cancer will not come back. There is no guarantee how long someone with cancer will live. I responded in another post that I have a friend who had this cancer and he is going on 11 years of being cancer free next month. I also know others who have not been so lucky. Going through this with my husband I have learned that there are no answers as to how his or our life will be. We are learning not to let the cancer consume us and while our lives have changed, we are learning to accept the changes and find a new life to create. We have to let go of who we were and learn who we are, how to enjoy each day and thank GOD (or who ever you believe in) for another day whether it is a good one or not. We have great days and we have no so great days but we take them as they come.

    My suggestion to you is try to not let what has happened to you define who you are. Learn about the things you can do and focus on those. I realize it is easier said then done but as my husband is goiong through this right now but as I have told him, he has two choices in any life crisis..he can remain the victim or he can become the survivor..to remain the victim and worry about all the what if's, the ones that we will never find the answers to will drive him insane and the cancer or he can become the survivor and realize yes life has changed but he is still here with us. He is learning how to be that survivor and told me just the other day that if anything cancer has taught him is that it has made him realize what is truly important and the things he took for granted. 

    Hang in there and stay on this site. When your having a moment, post..don't hold it in for you are not alone. 

    Christine

  • eternalife
    eternalife Member Posts: 36
    #3
    Christine135 said:

    Hang in there

    Hi Scott,

    My husband was diagnosed April 5th, a day before his 57th birthday with escophageal cancer. On August 21st, he had surgery to remove his entir eshophagus as there was a tumor at the end of the esophagus where it met the stomach. We are only 8 months after surgery and I will not lie for as you know it is a long and hard road. In all honesty, there is no crystal ball that will tell us how things will be. It is one day at a time. My husband was like you, active, owns his business and was a competitive rower. In many ways, I think that has been harder on my husband than the surgery because he is realizing his life has changed and changed forever. 

    There is no guarantee cancer will not come back. There is no guarantee how long someone with cancer will live. I responded in another post that I have a friend who had this cancer and he is going on 11 years of being cancer free next month. I also know others who have not been so lucky. Going through this with my husband I have learned that there are no answers as to how his or our life will be. We are learning not to let the cancer consume us and while our lives have changed, we are learning to accept the changes and find a new life to create. We have to let go of who we were and learn who we are, how to enjoy each day and thank GOD (or who ever you believe in) for another day whether it is a good one or not. We have great days and we have no so great days but we take them as they come.

    My suggestion to you is try to not let what has happened to you define who you are. Learn about the things you can do and focus on those. I realize it is easier said then done but as my husband is goiong through this right now but as I have told him, he has two choices in any life crisis..he can remain the victim or he can become the survivor..to remain the victim and worry about all the what if's, the ones that we will never find the answers to will drive him insane and the cancer or he can become the survivor and realize yes life has changed but he is still here with us. He is learning how to be that survivor and told me just the other day that if anything cancer has taught him is that it has made him realize what is truly important and the things he took for granted. 

    Hang in there and stay on this site. When your having a moment, post..don't hold it in for you are not alone. 

    Christine

    Stay in the light

    HI Christine,

    You have said it all so beautifully. Like you I am a caregiver to my husband with stage iv EC, diagnosed Dec. 2011, Mark has taken chemo since and will begin radiation tomorrow for 5 weeks. While we have our anxious moments waiting for scan results, we try to remain hopeful , pray  often and stay in the light. Too often emotions and feelings can drag one down. It is so self defeating to have those negative thoughts, this road can be very long and unpredictable.

    May everyone affected by cancer, stay strong and believe it is not our will that this has happened. The story is not over.  

  • paul61
    paul61 Member Posts: 1,392 Member
    #4
    Things do improve with time

    Scott,

    I had my surgery when I was 61. I am about three years out from surgery now. Things do definitely improve with time. The first year was the most difficult. My second year I started to notice the pain and numbness in my right chest area and back started to improve and my ability to eat most foods seemed to improve. As I continued to exercise on a regular basis my flexibility started to improve. I was retired when I was diagnosed so work was not an issue for me. After three years I can eat almost anything I want with the exception of items that are high in sugar. I still eat small meals and eat about six times a day but that has become my new normal. I walk at least two miles a day for exercise and I play golf a couple times a week and walk the course when I play.

    I am certainly not back to 100% of where I was prior to being diagnosed but I would say I am 80% back in terms of what I can do physically. I will happily take that given where I was three years ago. I think an important part of being a survivor is to view the glass as half full.

    None of us can predict what the future holds. Cancer has taught be to be thankful for the gift of each day and to not think too far ahead of myself.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

     

  • GerryS
    GerryS Member Posts: 227 Member
    #5
    3 years out......

    I am three years since my IL surgery and follow up chemo.   I thought I would never be able to do all the things I did before Cancer.   I am back to 90 percent.   I do get tired frequently, take needed rest during the day but have resumed all activities.  I had my surgery at age 58,  I farm so some days are long.  I am grateful for my success and pray daily for all of us going thru this.  Reoccurrence is always on my mind,  but I continue to do what I love.   Good luck my friend and stay positive.     Gerry

  • mardigras
    mardigras Member Posts: 215 Member
    #6
    There is always some good news here Scott!

    Hello, Scott,

    Please try to keep positive. I am a caregiver to my husband who had eosophagectomy on 28th February last year.

    Yes it has been a tough road for him, but it is getting easier. I worry that he feels very tired most of the time, but

    a nap in the afternoons seems to put that right. He eats smaller meals than he used to and more frequently, but I

    would say that he can eat most things with the exception of sugary things. That seems to cause dumping. Apart

    from that, he is doing really well and we are moving forward slowly and thankful for each new day. I truely hope that

    things get better for you and if you feel like sharing anytime, there will always be someone to listen here.

    Just a thought, if you are missing work. Perhaps you could help out at your local college. I'm sure that they would

    welcome some expert advice sometimes. Or learn a new language. It really is surprising how much better you feel

    when you can take your mind off the all consuming 'C' word for a few hours. Rob did and it has helped enormously.

    I wish you well.

    Take care. Love and hugs.

    Marci

  • JKGulliver
    JKGulliver Member Posts: 93
    #7
    Lots of Bucket List sites

    Your oncologist should be able to tell give you the chances you have of living another 10 years.  If not, you should go to another person for a second opinion.  I may be off the mark, but you have a secondary question - what to do with the rest of our life.  This is very, very personal.  But, I would say there are ways to find out.  First, I'd rent the movie The Bucket List, with Jack Nicholson and Morgan Freeman.  Then, I'd go online and Google "100 things to do before  you die".  There are lots of good suggestions.  

    It's a start.  

    Am happy for you and this past year.  All the best for 10 more.

     

  • dwhite0002
    dwhite0002 Member Posts: 126 Member
    #8
    survivor

    Scott,

    I am 38 years old. I was diagnosed when I was 32. I had radiation and chemo, followed by surgery. I spent 16 days in the hospital. It is not easy, my friend.

    I am a teacher, so the physical demands are probably not the same. I did go back to work full time and have continued my life, albeit with changes.

    If you'd like to talk, feel free to email me: dwhite0002@aol.com

    Godspeed,

    David

    Hillsboro, OH

  • rrsc
    rrsc Member Posts: 1
    #9
    GerryS said:

    3 years out......

    I am three years since my IL surgery and follow up chemo.   I thought I would never be able to do all the things I did before Cancer.   I am back to 90 percent.   I do get tired frequently, take needed rest during the day but have resumed all activities.  I had my surgery at age 58,  I farm so some days are long.  I am grateful for my success and pray daily for all of us going thru this.  Reoccurrence is always on my mind,  but I continue to do what I love.   Good luck my friend and stay positive.     Gerry

    90%

    Gerry, thanks so much for sharing your experience wtih esophogeal cancer.  My husband, at stage 2, had 9 weeks chemo, then the minimally invasive esopagectomy and just finished month two of post op.  He's got the j peg and is still getting 4 cans a day, as he couldn't start eating til 3 weeks post op.  Gerry, did you use a feeding tube, and for how long? The fatigue for him is so disabling. I fave farm friends and it's wonderful but back breaking work.  Good for you that you can do it.  Christine

  • GerryS
    GerryS Member Posts: 227 Member
    #10
    rrsc said:

    90%

    Gerry, thanks so much for sharing your experience wtih esophogeal cancer.  My husband, at stage 2, had 9 weeks chemo, then the minimally invasive esopagectomy and just finished month two of post op.  He's got the j peg and is still getting 4 cans a day, as he couldn't start eating til 3 weeks post op.  Gerry, did you use a feeding tube, and for how long? The fatigue for him is so disabling. I fave farm friends and it's wonderful but back breaking work.  Good for you that you can do it.  Christine

    No feeding tube...

    Christine, I did not receive a feeding tube.  I had plenty of pounds to lose.  I went from 252#. To 175#.   I am now at 195.   My doctor wanted me to try without the tube.   I was lucky that my appetite came back after several months, I can eat most anything meow, just don't overheat as much discomfort.   My experience echoes Paul61.  Things get better and I am most grateful for each and every day.  God bless....

    Gerry

  • aandcsidoti
    aandcsidoti Member Posts: 3
    #11
    dwhite0002 said:

    survivor

    Scott,

    I am 38 years old. I was diagnosed when I was 32. I had radiation and chemo, followed by surgery. I spent 16 days in the hospital. It is not easy, my friend.

    I am a teacher, so the physical demands are probably not the same. I did go back to work full time and have continued my life, albeit with changes.

    If you'd like to talk, feel free to email me: dwhite0002@aol.com

    Godspeed,

    David

    Hillsboro, OH

    Hi David

    David, 

    Thank you so much for posting.  My husband was diagnosed Stage 3 EC at 31.5 years old.  His 32 bday is this weekend.  He had preop radiation, chemo, and an IL surgery.  Have you been one of the lucky ones whose cancer hasn't made a reappearance?  The Post-op PET scan showed minimal disease with Charles, but it did show disease.  He pulled through the surgery like a champ and I was so hopeful that the worst was behind us.  

    Since you are a 6 year plus survivor, please post more of your story for those that are younger, in their 30s, like you and my husband. 

    Thanks

    Anna

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