How do you answer your husband's concerns about did they get "it" all; has the cancer comeback?

BMGky
BMGky Member Posts: 621
edited March 2014 in Esophageal Cancer #1
Husband diagnosed December 2009 with EC Stage II T2N0M0. Chemoradiation then ivor lewis surgery in April 2010. Doctor said clean borders, good connection, lymph nodes removed 4. None had cancer cells. Recovery is hard. Rib pain and shortness of breath. Eating is improving but keep making mistakes as to quantity and what type of food. Weight is holding but would like for him to gain. Has severe nasal allergies which can often cause stomach upset and weakness. Takes meds for same. Took a trip to visit grandchildren this weekend. Did not stop often enough. Both came back sore and achy. He is now again complaining of lung and stomach pain and wondering if his cancer is back. I feel it is from trip exhaustion. He had a CT scan about 3 to 4 week ago and everything looked great. Then I read where an EC patient has recurrence immediately after being told they were cancer free. How do we know or how do we continue to encourage when they are feeling bad. He isn't scheduled to see his surgeon or his oncologist for about 6 to 8 eights for general followup. The oncology team said he had the optimal response....but....we wonder.

Comments

  • cjmac49
    cjmac49 Member Posts: 100
    #2
    It does get easier.
    I was diag March 2008. Chemo, Rad and surgery (minimally invasive) Aug 2008. Recovery IS hard. I am almost 2 years post op and I still make mistakes as to quantity and what type of food. Still get tired after a long day. I still have abdominal discomfort but it is getting less. Your husband is probably suffering a bit from sitting during the trip.

    Worrying that the beast will return is constant at first but does diminish in intensity with time.

    Good luck to you both.

    Jim
  • Donna70
    Donna70 Member Posts: 852 Member
    #3
    7 months out still tired
    Hi,
    The amount and type of food is all learning from experience. I had the Ivor Lewis procedure in December, my back pain and rib pain is mostly gone but I get worn out by any sustained physical activity. Took my granddaughter to the mall, needed a nap after 2 hrs. You and your husband have to realize if the scans are alright and optimal response, it is all good but the procedure is a tough one and it takes a long time to recover. Your ribs hurt a lot, your back gets sore and you think the bad thoughts that it is back but you have to be patient. I have a mentor and she told me she did not feel like her normal self for one year. She had stage III squamous cell just like me. Now I am in my 7th month post op and I am turning the corner despite set backs. I had a positive lymph node and needed post surgery chemo but it all takes time. Try to pace your husband, do things but then rest. Don't do marathon walking or extended activities but keep active at a sensible rate. He is only 3 months post op, he must just take his time. Eat high calorie nutritious food lots of protein that he likes, my favs are crabmeat and shrimp and good ice cream if he can tolerate dairy. Hope this helps, we all are here to help so just ask. take care, prayers always,
    Donna70
  • paul61
    paul61 Member Posts: 1,392 Member
    #4
    Hi,

    I had Ivor Lewis surgery in December of last year. I am about 7 months post operation. I still have rib pain and occational abdominal and stomach discomfort. I am still working on finding the right amount and right foods to insure I do not have uncomfortable surprises.

    I would say if your oncologist is doing regular follow up testing, I would relax and focus on getting better. It is normal to still have some discomfort and to be easily fatigued so soon after surgery. I have been told by a number of people that the typical full recovery period from Ivor Lewis surgery is 12 to 18 months depending on age and other health factors.

    The fear of recurrence will be something we all live with for the rest of our lives. Each new pain or queasy feeling will make us wonder. Every time we go in for a follow up scan or endoscopy the wait for the results will be uncomfortable. But we need to be thankful for each good day and move past the bad days. Only God knows how long we have and if or when cancer may recur. If it does; there are other treatment options that can help.

    When I find myself focusing on negative thoughts I ask myself "What if my cancer did come back and this were my last year of life?" "Would I rather spend it in fear of something I can't control or would I rather spend it focusing on how lucky I am to have a family and friends who care about me and access to treatment options to help fight cancer to the end"?
    I choose to live one day at a time in the full realization of how lucky I am to have the resources and time I have.

    Encourage your husband to be patient; to deal with one day at a time; and to think positive thoughts. It will make him feel better and speed his recovery.

    Encourage him to speak to other cancer survivors who have had similar surgeries. Having other people say "Yeah I had that too", goes a long way to reducing fear about the bumps along the way to recovery.

    I hope your husband is feeling better soon.

    I would be happy to speak to him about my post operative experiences. Just send me an email message using the CSN Email option and I will send along my contact information.

    Best Regards,

    Paul Adams
    AKA "paul61"
    McCormick, South Carolina
  • BMGky
    BMGky Member Posts: 621
    #5
    Donna70 said:

    7 months out still tired
    Hi,
    The amount and type of food is all learning from experience. I had the Ivor Lewis procedure in December, my back pain and rib pain is mostly gone but I get worn out by any sustained physical activity. Took my granddaughter to the mall, needed a nap after 2 hrs. You and your husband have to realize if the scans are alright and optimal response, it is all good but the procedure is a tough one and it takes a long time to recover. Your ribs hurt a lot, your back gets sore and you think the bad thoughts that it is back but you have to be patient. I have a mentor and she told me she did not feel like her normal self for one year. She had stage III squamous cell just like me. Now I am in my 7th month post op and I am turning the corner despite set backs. I had a positive lymph node and needed post surgery chemo but it all takes time. Try to pace your husband, do things but then rest. Don't do marathon walking or extended activities but keep active at a sensible rate. He is only 3 months post op, he must just take his time. Eat high calorie nutritious food lots of protein that he likes, my favs are crabmeat and shrimp and good ice cream if he can tolerate dairy. Hope this helps, we all are here to help so just ask. take care, prayers always,
    Donna70

    7 mos out
    Thank you for your prayers. They're always needed and welcome. Our prayers in return. I read your post to my husband. It helps him to hear that what he is experiencing is to be expected. He's always been a very active, nothing's too hard guy. He works every day at his office but comes home one to two times a day to rest. His surgeon explained to him to give it time. That this surgery is far worse than open heart surgery. Thank you for being so helpful. Mary G.
  • BMGky
    BMGky Member Posts: 621
    #6
    cjmac49 said:

    It does get easier.
    I was diag March 2008. Chemo, Rad and surgery (minimally invasive) Aug 2008. Recovery IS hard. I am almost 2 years post op and I still make mistakes as to quantity and what type of food. Still get tired after a long day. I still have abdominal discomfort but it is getting less. Your husband is probably suffering a bit from sitting during the trip.

    Worrying that the beast will return is constant at first but does diminish in intensity with time.

    Good luck to you both.

    Jim

    It does get easier
    Thank you for your encouragement. Understanding what others have or are facing, helps us to better understand what is going on.
  • sandy1943
    sandy1943 Member Posts: 824
    #7
    I had the ivor lewis surgery
    I had the ivor lewis surgery in May'08. I had a hard time regaining strength. I started going to the Gym and would do a few exercises on the machines---very light. Then after a while I started walking a little on the threadmill. Joining the gym helped me regain a lot of my mobility and I started to feel a lot better. I still make mistakes in eating. Sometimes I throw caution to the wind, knowing I'll have consequences to pay. I still tire out more than I did before I got sick. I've been told this is common after chemo for a long time. I try not to let my imagination go haywire. I'm 67 and I seem to always have some kind of new ache. But sometimes I do worry and wonder if the Dr's are sure all is well. I try to live one day at a time, because the only thing I'm sure of is that "TODAY ALL IS WELL"
  • Grandma Jo
    Grandma Jo Member Posts: 36
    #8
    paul61 said:

    Hi,

    I had Ivor Lewis surgery in December of last year. I am about 7 months post operation. I still have rib pain and occational abdominal and stomach discomfort. I am still working on finding the right amount and right foods to insure I do not have uncomfortable surprises.

    I would say if your oncologist is doing regular follow up testing, I would relax and focus on getting better. It is normal to still have some discomfort and to be easily fatigued so soon after surgery. I have been told by a number of people that the typical full recovery period from Ivor Lewis surgery is 12 to 18 months depending on age and other health factors.

    The fear of recurrence will be something we all live with for the rest of our lives. Each new pain or queasy feeling will make us wonder. Every time we go in for a follow up scan or endoscopy the wait for the results will be uncomfortable. But we need to be thankful for each good day and move past the bad days. Only God knows how long we have and if or when cancer may recur. If it does; there are other treatment options that can help.

    When I find myself focusing on negative thoughts I ask myself "What if my cancer did come back and this were my last year of life?" "Would I rather spend it in fear of something I can't control or would I rather spend it focusing on how lucky I am to have a family and friends who care about me and access to treatment options to help fight cancer to the end"?
    I choose to live one day at a time in the full realization of how lucky I am to have the resources and time I have.

    Encourage your husband to be patient; to deal with one day at a time; and to think positive thoughts. It will make him feel better and speed his recovery.

    Encourage him to speak to other cancer survivors who have had similar surgeries. Having other people say "Yeah I had that too", goes a long way to reducing fear about the bumps along the way to recovery.

    I hope your husband is feeling better soon.

    I would be happy to speak to him about my post operative experiences. Just send me an email message using the CSN Email option and I will send along my contact information.

    Best Regards,

    Paul Adams
    AKA "paul61"
    McCormick, South Carolina

    I am so down today until I started reading the wonderful support comments of all of you. My daughter had surgery in November of last year. They removed all but 1/3 of her stomach and all but 1/3 of her esophagus . She began feeling better with more energy in April of this year even went back to work full time She was able to eat and drink small amounts without pain in her stomach. This June we were told it is back in her peritoneal cavity and they began chemo last week to make her comfortable. They had to stop the treatment after two days and disconnect the pump as she became sick from the fluid buildup around her organs not the chemo. Yesterday they removed 2.5 liters of fluid from her cavity. She is feeling very sad and said I do not want the TPN pump , I would rather die. I am just beside myself with fear and grieving. Please tell me if anyone of you has had the fluid issue and how you handled it. I need help to help her. Thank you for any information and God bless all of you. Grandma Jo
  • BMGky
    BMGky Member Posts: 621
    #9
    paul61 said:

    Hi,

    I had Ivor Lewis surgery in December of last year. I am about 7 months post operation. I still have rib pain and occational abdominal and stomach discomfort. I am still working on finding the right amount and right foods to insure I do not have uncomfortable surprises.

    I would say if your oncologist is doing regular follow up testing, I would relax and focus on getting better. It is normal to still have some discomfort and to be easily fatigued so soon after surgery. I have been told by a number of people that the typical full recovery period from Ivor Lewis surgery is 12 to 18 months depending on age and other health factors.

    The fear of recurrence will be something we all live with for the rest of our lives. Each new pain or queasy feeling will make us wonder. Every time we go in for a follow up scan or endoscopy the wait for the results will be uncomfortable. But we need to be thankful for each good day and move past the bad days. Only God knows how long we have and if or when cancer may recur. If it does; there are other treatment options that can help.

    When I find myself focusing on negative thoughts I ask myself "What if my cancer did come back and this were my last year of life?" "Would I rather spend it in fear of something I can't control or would I rather spend it focusing on how lucky I am to have a family and friends who care about me and access to treatment options to help fight cancer to the end"?
    I choose to live one day at a time in the full realization of how lucky I am to have the resources and time I have.

    Encourage your husband to be patient; to deal with one day at a time; and to think positive thoughts. It will make him feel better and speed his recovery.

    Encourage him to speak to other cancer survivors who have had similar surgeries. Having other people say "Yeah I had that too", goes a long way to reducing fear about the bumps along the way to recovery.

    I hope your husband is feeling better soon.

    I would be happy to speak to him about my post operative experiences. Just send me an email message using the CSN Email option and I will send along my contact information.

    Best Regards,

    Paul Adams
    AKA "paul61"
    McCormick, South Carolina

    Thank you so much for your encouraging thoughts. I read them to my husband. He really appreciated your input and caring. Actually, I think we both are still trying to get a handle on all that has happened in such a short time. This cancer group means so much to us. Just hearing some positive input helped him. Hopefully, we can stay on the positive side. If negative thoughts creep in, we may take you up on your kind offer. MG
  • BMGky
    BMGky Member Posts: 621
    #10
    BMGky said:

    Thank you so much for your encouraging thoughts. I read them to my husband. He really appreciated your input and caring. Actually, I think we both are still trying to get a handle on all that has happened in such a short time. This cancer group means so much to us. Just hearing some positive input helped him. Hopefully, we can stay on the positive side. If negative thoughts creep in, we may take you up on your kind offer. MG

    Thank you for your comment. It was posted under my topic as a reply. You might want to copy it as a post and start a new thread as it may have gotten lost under my original topic. Hope you find some information. I don't know anything about this.
  • BMGky
    BMGky Member Posts: 621
    #11
    sandy1943 said:

    I had the ivor lewis surgery
    I had the ivor lewis surgery in May'08. I had a hard time regaining strength. I started going to the Gym and would do a few exercises on the machines---very light. Then after a while I started walking a little on the threadmill. Joining the gym helped me regain a lot of my mobility and I started to feel a lot better. I still make mistakes in eating. Sometimes I throw caution to the wind, knowing I'll have consequences to pay. I still tire out more than I did before I got sick. I've been told this is common after chemo for a long time. I try not to let my imagination go haywire. I'm 67 and I seem to always have some kind of new ache. But sometimes I do worry and wonder if the Dr's are sure all is well. I try to live one day at a time, because the only thing I'm sure of is that "TODAY ALL IS WELL"

    I had the ivor lewis surgery
    Thanks for the comments and very good advice. Every day is a gift and you are exactly right "Today all is well."

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