Surgery or not

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pnorman
pnorman Member Posts: 1
in Esophageal Cancer #1
My X's wife was diagnosed about 2 months ago with Stage III EC. She has gone through chemo & radiation & upon conclusion, the doctors were VERY pleased with her progress. Surgery was scheduled for yesterday but postponed as she has lost too much weight, can't keep food down, has no appetite. Upon consulting with their oncologist at the City of Hope, he was quite blunt about the surgery & the side effects which sounded horrific - the one that sticks in my mind is having to sleep sitting up for the rest of her life. Both she & my X were appalled by what they heard & I think as considering NOT having the surgery.

Initially I agreed. A recent PET scan shows that the tumor is basically gone, there is no metastasizing to a major organ. But having done some more reading & researaching, I have pretty much changed my mind. It seems that the consensus on EC is that the tumor is likely to come back & if it does & the patient has had no surgery, the the prognosis is about one year. I know some of you out there are going on 5 years even 7 but have had the surgery, be it the Ivar Lewis or the MIE. I think now that she should have the surgery. I have read nothing in the info on side effects on having to sleep sitting up forever. The primary side effects after healing seem to be learning to eat again. Right now in this stage of what I have read, I think she must have the surgery.

Would appreciate input, please.

Comments

  • paul61
    paul61 Member Posts: 1,391 Member
    #2
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    You need to sleep elevated but not "sitting up"
    First of all; let me start by saying the only "curative" treatment for esophageal cancer is surgery. And many oncologists will not use the "cure" word even after successful tri-modal therapy (chemotherapy, radiation, and surgery). So I definitely think her best chance for long term survival is surgery.

    I had Ivor Lewis surgery. As a part of any esophagectomy the lower esophageal sphincter is removed. As a result, there is nothing to keep the contents of the stomach from moving into the esophagus when the head is positioned below or even with the stomach. But it does not require that you sleep sitting up. It just requires that your chest and head stay elevated above your stomach. I sleep in an adjustable bed. I sleep with my upper body at about a 45 degree angle and my legs elevated as well. Having my legs elevated helps to prevent me from sliding down the incline while I am sleeping. I have learned to sleep this way and although it took a while; since I was a side sleeper before, I am now comfortable with the position.

    Yes the surgery is difficult. If your wife is a candidate for a minimally invasive esophagectomy that is best.

    I would encourage her to have the surgery when she recovers from he current treatment plan.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Unknown
    Unknown
    #3
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    This comment has been removed by the Moderator
  • Daisylin
    Daisylin Member Posts: 365
    #4
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    unknown said:

    This comment has been removed by the Moderator

    more bluntness.....
    I do agree, dealing with the after effects of surgery does sound daunting, digestive problems, pain and yes, sleeping elevated..... HOWEVER, my husband was diagnosed stage 4b right out of the gate, so surgery was not an option.

    I can't comment on how unpleasant recovery may be, but I do know that the alternative is much, much worse. My husband passed away November 8th of this year. As Sherri (above) mentioned, we would have jumped at the chance for surgery, and slept on our heads, slept outside in the dead of winter, sold everything we owned, anything to get rid of the cancer. EC is a nasty disease, and you really don't want to take any chances of having it spread or come back. It is an aggressive cancer, one of the worst ones out there in fact. Surgery is the only chance she's going to have for any hope of survival. Sorry for being so blunt, but it is true, and the truth is what she needs to hear, like it or not. She needs to make an informed decision, and decide if being alive with some discomforts is more appealing than death. It seems to be an obvious choice from where I stand. There just does not seem to be any better way to put it, and again, sorry it sounds so harsh. Many of us stage ivs would give up everything to have the chance at surgery.

    Although my husband did not have surgery, he did have an esophageal stretch as well as a stent put in, and therefore had to sleep elevated as well. We ordered an adjustable hospital bed, and he absolutely loved it. Your X could always get one of those adjustable beds that are sold in stores, they are expensive, but supposedly very comfortable and worth the money.

    I hope you keep us posted as she travels this bumpy road, you will find so much information here, as well as personal stories of survival, (lots of the people who post here have had the surgery, some as recently as a few days ago, to a 9 year survivor) a great place to ask questions, vent and just be heard by others.

    Sorry that you find yourself in this situation, I hope she is able and willing to have the surgery
    Chantal
  • ritawaite13
    ritawaite13 Member Posts: 236
    #5
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    Daisylin said:

    more bluntness.....
    I do agree, dealing with the after effects of surgery does sound daunting, digestive problems, pain and yes, sleeping elevated..... HOWEVER, my husband was diagnosed stage 4b right out of the gate, so surgery was not an option.

    I can't comment on how unpleasant recovery may be, but I do know that the alternative is much, much worse. My husband passed away November 8th of this year. As Sherri (above) mentioned, we would have jumped at the chance for surgery, and slept on our heads, slept outside in the dead of winter, sold everything we owned, anything to get rid of the cancer. EC is a nasty disease, and you really don't want to take any chances of having it spread or come back. It is an aggressive cancer, one of the worst ones out there in fact. Surgery is the only chance she's going to have for any hope of survival. Sorry for being so blunt, but it is true, and the truth is what she needs to hear, like it or not. She needs to make an informed decision, and decide if being alive with some discomforts is more appealing than death. It seems to be an obvious choice from where I stand. There just does not seem to be any better way to put it, and again, sorry it sounds so harsh. Many of us stage ivs would give up everything to have the chance at surgery.

    Although my husband did not have surgery, he did have an esophageal stretch as well as a stent put in, and therefore had to sleep elevated as well. We ordered an adjustable hospital bed, and he absolutely loved it. Your X could always get one of those adjustable beds that are sold in stores, they are expensive, but supposedly very comfortable and worth the money.

    I hope you keep us posted as she travels this bumpy road, you will find so much information here, as well as personal stories of survival, (lots of the people who post here have had the surgery, some as recently as a few days ago, to a 9 year survivor) a great place to ask questions, vent and just be heard by others.

    Sorry that you find yourself in this situation, I hope she is able and willing to have the surgery
    Chantal

    Afraid of the aftermath of surgery?
    Of course she is! It is definately not a walk in the park surgery but when the only alternative is the misery of dealing with an advanced stage of EC and more than likely having this terrible disease take her life, well, I don't think it's much of an alternative.
    My husband was diagnosed with Stage IV so surgery was not an option. He lived just 15 weeks after diagnosis. This cancer is unlike any other! No cancer is a good cancer but this one is especially vicious. Please encourage her to get to a major cancer center - do your research and listen to others on this board who have walked this road, have the surgery before it's no longer an option.
    This site is made up of the most amazing people you will never meet! We are like a family here - we care about each other and celebrate the victories and mourn the defeats. Hugs to you as you move forward.
    Rita
  • megmacmd
    megmacmd Member Posts: 85
    #6
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    Daisylin said:

    more bluntness.....
    I do agree, dealing with the after effects of surgery does sound daunting, digestive problems, pain and yes, sleeping elevated..... HOWEVER, my husband was diagnosed stage 4b right out of the gate, so surgery was not an option.

    I can't comment on how unpleasant recovery may be, but I do know that the alternative is much, much worse. My husband passed away November 8th of this year. As Sherri (above) mentioned, we would have jumped at the chance for surgery, and slept on our heads, slept outside in the dead of winter, sold everything we owned, anything to get rid of the cancer. EC is a nasty disease, and you really don't want to take any chances of having it spread or come back. It is an aggressive cancer, one of the worst ones out there in fact. Surgery is the only chance she's going to have for any hope of survival. Sorry for being so blunt, but it is true, and the truth is what she needs to hear, like it or not. She needs to make an informed decision, and decide if being alive with some discomforts is more appealing than death. It seems to be an obvious choice from where I stand. There just does not seem to be any better way to put it, and again, sorry it sounds so harsh. Many of us stage ivs would give up everything to have the chance at surgery.

    Although my husband did not have surgery, he did have an esophageal stretch as well as a stent put in, and therefore had to sleep elevated as well. We ordered an adjustable hospital bed, and he absolutely loved it. Your X could always get one of those adjustable beds that are sold in stores, they are expensive, but supposedly very comfortable and worth the money.

    I hope you keep us posted as she travels this bumpy road, you will find so much information here, as well as personal stories of survival, (lots of the people who post here have had the surgery, some as recently as a few days ago, to a 9 year survivor) a great place to ask questions, vent and just be heard by others.

    Sorry that you find yourself in this situation, I hope she is able and willing to have the surgery
    Chantal

    how are you
    Been thinking about you and hope you are doingas best you can.Iknow your loneliness at losing your best friend husband.After 3 years its a little better but never the samenHope you are taking care of yourself and can try to enjoy the magic of christmas Remember the goodtimes get the oictures out and cry a little but find a a laugh and a smile toomy prayers are with you MegMac
  • megmacmd
    megmacmd Member Posts: 85
    #7
    Options
    Daisylin said:

    more bluntness.....
    I do agree, dealing with the after effects of surgery does sound daunting, digestive problems, pain and yes, sleeping elevated..... HOWEVER, my husband was diagnosed stage 4b right out of the gate, so surgery was not an option.

    I can't comment on how unpleasant recovery may be, but I do know that the alternative is much, much worse. My husband passed away November 8th of this year. As Sherri (above) mentioned, we would have jumped at the chance for surgery, and slept on our heads, slept outside in the dead of winter, sold everything we owned, anything to get rid of the cancer. EC is a nasty disease, and you really don't want to take any chances of having it spread or come back. It is an aggressive cancer, one of the worst ones out there in fact. Surgery is the only chance she's going to have for any hope of survival. Sorry for being so blunt, but it is true, and the truth is what she needs to hear, like it or not. She needs to make an informed decision, and decide if being alive with some discomforts is more appealing than death. It seems to be an obvious choice from where I stand. There just does not seem to be any better way to put it, and again, sorry it sounds so harsh. Many of us stage ivs would give up everything to have the chance at surgery.

    Although my husband did not have surgery, he did have an esophageal stretch as well as a stent put in, and therefore had to sleep elevated as well. We ordered an adjustable hospital bed, and he absolutely loved it. Your X could always get one of those adjustable beds that are sold in stores, they are expensive, but supposedly very comfortable and worth the money.

    I hope you keep us posted as she travels this bumpy road, you will find so much information here, as well as personal stories of survival, (lots of the people who post here have had the surgery, some as recently as a few days ago, to a 9 year survivor) a great place to ask questions, vent and just be heard by others.

    Sorry that you find yourself in this situation, I hope she is able and willing to have the surgery
    Chantal

    how are you
    Been thinking about you and hope you are doingas best you can.Iknow your loneliness at losing your best friend husband.After 3 years its a little better but never the samenHope you are taking care of yourself and can try to enjoy the magic of christmas Remember the goodtimes get the oictures out and cry a little but find a a laugh and a smile toomy prayers are with you MegMac
  • sandy1943
    sandy1943 Member Posts: 824
    #8
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    I agree with all the other
    I agree with all the other post. Yes, we have to make a lot of adjustments, but nothing that is impossible. I sleep on a wedge and a pillow. I do turn on my side without a problem. I will occasionally roll off and immediately have reflux and have to take medicine. But this and a few other life changes is well worth the surgery to have a chance to be cancer free. I'm four years since dx and still NED.
    Sandra
  • TerryV
    TerryV Member Posts: 887
    #9
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    It's not sleeping sitting up :)
    Hello & "Welcome" to the cancer version of hell. I'm so sorry for your X's wife's diagnosis.

    Yes, surgery is very doable. Yes, her sleep position will change. But only some! An incline or wedge pillow is recommended. My husband is very comfortable with a small wedge pillow that we picked up at BB&Beyond. Others find more comfort in adjustable beds.

    and Yes, your research coincides with mine. If there isn't surgery, this beast is likely to return with a vengance. Surgery is no guarantee of forever NED, but lack of surgery is too close to a guarantee of an EC return.

    Just my thoughts....

    Terry
    Wife to Nick, age 48
    dx T3N1M0 05/19/11
    26 Radiations
    Weeks 2 & 6 Cisplatin & 5FU
    THE 09/08/11
    Clean Path 09/13/11

    and I am FOREVER GRATEFUL that my husband had the surgery :) So is he!

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