esophageal stretch?

Daisylin
Daisylin Member Posts: 365
in Esophageal Cancer #1
I have read that many of you have had stretches done to the esophagus. We mentioned it to our doctor during the visit from he** last thursday. He told us that Lee does not need it. He did not give any reasons, and since the visit was going badly to begin with, I didn't push it. As of this time, the results of the CT showed that, to quote directly from the report that we were given ....

"The distal third of the esophagus is diffusely thickened with soft tissue nodularity measuring up to 1.0 cm. This has progressed since the previous exam and may represent paraesophageal lymph nodes or exophytic tumor."

I have no idea what that all means, but what I do know is that he can only eat cream soups, and a few types of cereal at this point. That's all..... And on top of that, when food is getting 'stuck' he is not able to feel it anymore, until it reaches his windpipe and he starts choking. It used to be that he'd feel food stuck and could simply 'cough' it up. Now, he almost stops breathing and I have to pound his back to get the stuff out.

Any idea why he would not be ready for an esophageal stretch? We seem to have a history with our doctor saying that we don't need / aren't ready for all the treatments that we ask about, when clearly we are! Could it be because of the recent feeding tube placement? He was instructed to still try to maintain at least 500 calories per day by mouth, but we're lucky if we can get 200.

As always, thanks for your input!
Chantal
wife of Lee (leeinlondon) stage ivb

Comments

  • NikiMo
    NikiMo Member Posts: 342
    #2
    Oncologist or GI doc?
    Hi Chantal,

    Going from my limited background in biology and an EC caregiver, I am thinking that how the PET scan reads is that the pressure or the feeling of the passage may be cause by inflammation on the outside of the esophagus. Jeff has two suspicious 'paraesophageal' nodes, so I know those are very close to the tumor site and very near the esophagus. The word exophytic would also make me think there could be a tumor on the outside of the esophagus that has grown and is pressing on the esophagus. If that were true maybe stretching wouldn't help as the pressure which could make the opening feel smaller is coming from outside of the esophagus and not from the tumor in the esophagus.

    I believe this meeting was with the oncologist, have you asked your GI doctor? I understand your feeling of the appointment from hell, we had a not so nice visit and it becomes nearly impossible to understand what the doctor's are saying, let alone coming up with questions. I think that you have a had a few days to process, maybe calling the doctor again and expressing your concerns. It took some prodding to get the feeding tube, unfortunately it sounds like you may need to go to bat again.

    Niki
  • Daisylin
    Daisylin Member Posts: 365
    #3
    NikiMo said:

    Oncologist or GI doc?
    Hi Chantal,

    Going from my limited background in biology and an EC caregiver, I am thinking that how the PET scan reads is that the pressure or the feeling of the passage may be cause by inflammation on the outside of the esophagus. Jeff has two suspicious 'paraesophageal' nodes, so I know those are very close to the tumor site and very near the esophagus. The word exophytic would also make me think there could be a tumor on the outside of the esophagus that has grown and is pressing on the esophagus. If that were true maybe stretching wouldn't help as the pressure which could make the opening feel smaller is coming from outside of the esophagus and not from the tumor in the esophagus.

    I believe this meeting was with the oncologist, have you asked your GI doctor? I understand your feeling of the appointment from hell, we had a not so nice visit and it becomes nearly impossible to understand what the doctor's are saying, let alone coming up with questions. I think that you have a had a few days to process, maybe calling the doctor again and expressing your concerns. It took some prodding to get the feeding tube, unfortunately it sounds like you may need to go to bat again.

    Niki

    Hi Niki
    Thank you for your wisdom..... We don't actually have a GI doctor. I'm going to go out on a limb and guess that all of you out there have one? Never even thought of it, nor did our oncologist mention a referral..... (big surprise!) The only time we saw a GI was for the initial endoscopy, back in January.
    What you said makes sense, perhaps if the tumors are outside the walls, a stretch wouldn't do much good. I will revisit the question though. I'm getting sick and tired of hearing the phrase "he doesn't need it yet"
    Thanks again Niki,
    Chantal
  • Unknown
    Unknown
    #4
    Daisylin said:

    Hi Niki
    Thank you for your wisdom..... We don't actually have a GI doctor. I'm going to go out on a limb and guess that all of you out there have one? Never even thought of it, nor did our oncologist mention a referral..... (big surprise!) The only time we saw a GI was for the initial endoscopy, back in January.
    What you said makes sense, perhaps if the tumors are outside the walls, a stretch wouldn't do much good. I will revisit the question though. I'm getting sick and tired of hearing the phrase "he doesn't need it yet"
    Thanks again Niki,
    Chantal

    This comment has been removed by the Moderator
  • chemosmoker
    chemosmoker Member Posts: 501
    #5
    Daisylin said:

    Hi Niki
    Thank you for your wisdom..... We don't actually have a GI doctor. I'm going to go out on a limb and guess that all of you out there have one? Never even thought of it, nor did our oncologist mention a referral..... (big surprise!) The only time we saw a GI was for the initial endoscopy, back in January.
    What you said makes sense, perhaps if the tumors are outside the walls, a stretch wouldn't do much good. I will revisit the question though. I'm getting sick and tired of hearing the phrase "he doesn't need it yet"
    Thanks again Niki,
    Chantal

    Also have a GI doc...
    Chantal,
    Hey there. Yes I went to a GI doc FIRST and he is the one who found the tumors, staged me at IV without all the fancy pathology (correctly I might ad!) and said never get a stent or a stretch. We have continued to have all pathology and workups sent to our GI doc and even listed HIM as my primary care doctor so he was "in the loop" on all of my treatments. Whenever there have been problems, he or his staff have been the ones we have turned to for help or guidance, and they have been amazing. I don't know how that works with the Canadian system (I can hear William singing in the background!) but here, as long as insurance has them down as one of my providers, they get the charts sent to them, and they can treat and advise and prescribe just as well as my Onco or Onco's since there have been three.

    I WAS told that (palliative) targeted (cyber knife or the like) radiation to the esophagus WAS an option if swallowing becomes an issue, at any time. I don't know if this is an option for Lee still or not, but just in case I wanted to throw it out there again anyway.
    Our GI doc said that the stent are a nightmare and have so many complications that it is to be RUN AWAY from. From what I have read and heard from those who went there, he was right on. As for the stretch, he said the chances of tearing, bleeding, injury, tumor bleeding, ad infinitum, were never worth the risk for the little benefits. Hope this helps?

    Thinking about and praying for the two of you every day.

    -Eric and Michelle
  • Daisylin
    Daisylin Member Posts: 365
    #6
    unknown said:

    This comment has been removed by the Moderator

    Sherri,
    You are absolutely right, it is RIDICULOUS. I feel like I'm constantly doctor bashing, but seriously, what choice do I have? I read on here endlessly, and research on other sites, and I feel that we are not getting adequate care. I also agree that it may be a stage iv thing, but all we're asking for is quality of life stuff, nothing heroic. Had he been given hydration and feeding tube when we originally asked, I feel that we would be in an entirely different place right now. I feel like they are robbing us of 'quality' time. We seem to always have the resident doctors when we have our appointments, some are really good, others not so much. One of them mentioned something about Lee's stomach cancer (which he DOES NOT have) and when we pretty much fell out of our chair in shock, she corrected herself by saying, "oh, i mean esophagus, same thing", and another who removed the wrong part of the feeding tube suturing, and had to re-stitch it back on. It frustrates me to no end....

    The famous medical quote here in Canada is that "if you're going to get sick, London Ontario is the best place to do it" Really? Maybe it's a stage iv thing, maybe it's the health care crisis. who knows, but my faith in doctors is rapidly diminishing.

    As for the stretch, some days he can barely swallow his saliva, let alone the 500 calories that he is supposed to be getting by mouth. So, I ask, when is the right time?????

    I am so thankful that they are referring us to a palliative care doctor. I have great expectations that someone else may actually listen to us and be a bit more willing to aid us. I truly respect and love all of you, and feel that your advice is invaluable, but it would be nice to get some direction from doctors, instead of patients for a change.

    Happy Monday!
    Chantal
  • swagner
    swagner Member Posts: 21
    #7
    esophageal stretch
    I had to be stretched 4 times. One of my friends never needed stretching but mine was bad. I could no longer swallow foods and just like you, I had a liquid diet. After the 1st stretching - it stayed open for 2 wks and started closing again. In 4 months I had 4 stretchs. The last one worked and its now been 1 yr 3 mos. They do an endoscopic and stretch the esophagus. No soreness for me afterwards, just happy I could eat small amouns of food but I could swallow without problems. Good Luck
  • fredswilma
    fredswilma Member Posts: 185
    #8
    Hi Chantal
    Just with regard
    Hi Chantal
    Just with regard to an esophageal stretch, we had to push for one for Mark, we live in NZ and have a public health system similar to yours, however I was going to say they went in to do the stretch and found that the walls of the eosaphagus were to scarred and were concerned that doing the stretch would cause more problems, i.e tearing, so no stretches for us, they are more keen to put a stent in which neither Mark or I are keen to do whilst he is undergoing Chemo, I believe that if the Chemo is working and the tumor decreases then the stent could very easily become dislodged, causing yet more problems you know the same old one step forward two steps back.
    It does seem very much to me that with any of the treatments there are side affects and for any recommended treatments you really have to question whether the side affects outweigh the benefits, or vice-versa very challenging to make decisions when emotions are running array.
    Thinking of you both.
    Ann
  • rose20
    rose20 Member Posts: 258
    #9
    Chantal...Just a thought
    I just read your post...my dear brother suffers with this same issue of eating. HE even has a stent!
    Although they did tell him from the beginnig that the stent is not placed for eating purposes but to keep the esophagus opened.
    Whatever that means.
    You would think that if the esophagus is opened you could eat but not so.
    They did a test on my brother and see no obstructions that would keep him from eating.
    It is almost like one with psychological anorexia who has a fear of gaining weight, but only the fear with those with this cancer is a hidden fear of choking and throwing up.
    My brother said that throwing up is so painful for him.
    Just like in anorexia soon the body rejects any food swallowed normally because it is just not use to that anymore.
    After a whole year with this cancer my brother can only eat creamed soups and some days maybe something more solid but that is rare and some days he can only drink his drinks if that.
    Praying for you and your husband.
  • Bob56
    Bob56 Member Posts: 5
    #10
    fredswilma said:

    Hi Chantal
    Just with regard
    Hi Chantal
    Just with regard to an esophageal stretch, we had to push for one for Mark, we live in NZ and have a public health system similar to yours, however I was going to say they went in to do the stretch and found that the walls of the eosaphagus were to scarred and were concerned that doing the stretch would cause more problems, i.e tearing, so no stretches for us, they are more keen to put a stent in which neither Mark or I are keen to do whilst he is undergoing Chemo, I believe that if the Chemo is working and the tumor decreases then the stent could very easily become dislodged, causing yet more problems you know the same old one step forward two steps back.
    It does seem very much to me that with any of the treatments there are side affects and for any recommended treatments you really have to question whether the side affects outweigh the benefits, or vice-versa very challenging to make decisions when emotions are running array.
    Thinking of you both.
    Ann

    dealing with a new way of life "No Voice"
    After reading these post i don't know if i'm doing the righ thing,I had surgery on Oct 4 2010 to remove my voice box and rebuild my eosaphagus. i was cut open like a fish. in may of this year i had a T.E.P impalced so I can somewhat talk. People still don't understand me. but thats ok i never have anything important to say. But i had my eosaphagus stretched twice, and was never told of any danger of having it done. I can still only drink my food, happy i have a blender. to take in 3000 cal a day and i put my weight back on. I stay in teh house most of the time because people look at me like i'm going to take their 1st born or something.I went to a support group, but no body could understand me there as well.

    does anyone have any idea s how i can feel better about life. The skin on my neck is so tight i can not use a hand held to talk with. so i have to write everything. I feel like i'm starting to with draw from life , I can not talk on the phone , cannot go out to eat with friends, how do people deal with this new way of life.

    any ideas
  • Daisylin
    Daisylin Member Posts: 365
    #11
    Bob56 said:

    dealing with a new way of life "No Voice"
    After reading these post i don't know if i'm doing the righ thing,I had surgery on Oct 4 2010 to remove my voice box and rebuild my eosaphagus. i was cut open like a fish. in may of this year i had a T.E.P impalced so I can somewhat talk. People still don't understand me. but thats ok i never have anything important to say. But i had my eosaphagus stretched twice, and was never told of any danger of having it done. I can still only drink my food, happy i have a blender. to take in 3000 cal a day and i put my weight back on. I stay in teh house most of the time because people look at me like i'm going to take their 1st born or something.I went to a support group, but no body could understand me there as well.

    does anyone have any idea s how i can feel better about life. The skin on my neck is so tight i can not use a hand held to talk with. so i have to write everything. I feel like i'm starting to with draw from life , I can not talk on the phone , cannot go out to eat with friends, how do people deal with this new way of life.

    any ideas

    Welcome Bob,
    Hi Bob, and welcome..... I'm sorry for the circumstances that brought you here. i am so very saddened to hear your story. As far as I know, no one posting here has had their voice box removed. I'm certainly not trying to 'get rid of you', but you may wish to search on the head and neck cancer boards. Perhaps there you may find people who share the same dilemma. I can only imagine how awful it would feel to not be understood. I can feel your pain in your post, and truly, my heart is breaking for you.

    I work with autistic kids, and one of the things that we use with them is a device that you basically touch the images on the screen. (they have an app for the ipad, but can't remember the name off hand, sorry) Also, devices are available from your local assistive devices program. (We are in Canada, but I'm sure there is an equivalent service wherever you are) Anyways, once you have completed your thought, question, response whatever, you hit the talk button, and the computer does the talking for you. It uses complete sentences and is very well laid out. It is super simple to operate. I don't know if something like that would make you more self conscious, or if it would help. i'm sorry that that's all I can offer. there are also apps where you type in your words and the computer 'reads' it aloud for you. I believe it's called 'write outloud'.

    Your best bet would be to post a new message, introducing yourself and reiterating what you've just written here, as well as your cancer type, stage, treatments and whatever else you feel comfortable telling us. We may not be too helpful to your situation, but you will certainly find shoulders to lean on, and possibly some better advice than I was able to come up with.

    Again, so sorry for the pain you are in, I wish you well in your journey
    Chantal
  • Unknown
    Unknown
    #12
    Bob56 said:

    dealing with a new way of life "No Voice"
    After reading these post i don't know if i'm doing the righ thing,I had surgery on Oct 4 2010 to remove my voice box and rebuild my eosaphagus. i was cut open like a fish. in may of this year i had a T.E.P impalced so I can somewhat talk. People still don't understand me. but thats ok i never have anything important to say. But i had my eosaphagus stretched twice, and was never told of any danger of having it done. I can still only drink my food, happy i have a blender. to take in 3000 cal a day and i put my weight back on. I stay in teh house most of the time because people look at me like i'm going to take their 1st born or something.I went to a support group, but no body could understand me there as well.

    does anyone have any idea s how i can feel better about life. The skin on my neck is so tight i can not use a hand held to talk with. so i have to write everything. I feel like i'm starting to with draw from life , I can not talk on the phone , cannot go out to eat with friends, how do people deal with this new way of life.

    any ideas

    This comment has been removed by the Moderator
  • Bob56
    Bob56 Member Posts: 5
    #13
    Daisylin said:

    Welcome Bob,
    Hi Bob, and welcome..... I'm sorry for the circumstances that brought you here. i am so very saddened to hear your story. As far as I know, no one posting here has had their voice box removed. I'm certainly not trying to 'get rid of you', but you may wish to search on the head and neck cancer boards. Perhaps there you may find people who share the same dilemma. I can only imagine how awful it would feel to not be understood. I can feel your pain in your post, and truly, my heart is breaking for you.

    I work with autistic kids, and one of the things that we use with them is a device that you basically touch the images on the screen. (they have an app for the ipad, but can't remember the name off hand, sorry) Also, devices are available from your local assistive devices program. (We are in Canada, but I'm sure there is an equivalent service wherever you are) Anyways, once you have completed your thought, question, response whatever, you hit the talk button, and the computer does the talking for you. It uses complete sentences and is very well laid out. It is super simple to operate. I don't know if something like that would make you more self conscious, or if it would help. i'm sorry that that's all I can offer. there are also apps where you type in your words and the computer 'reads' it aloud for you. I believe it's called 'write outloud'.

    Your best bet would be to post a new message, introducing yourself and reiterating what you've just written here, as well as your cancer type, stage, treatments and whatever else you feel comfortable telling us. We may not be too helpful to your situation, but you will certainly find shoulders to lean on, and possibly some better advice than I was able to come up with.

    Again, so sorry for the pain you are in, I wish you well in your journey
    Chantal

    Thank you for your sweet
    Thank you for your sweet post, I hope that i will find the answers I am looking for on the "head and neck" wall. I never smoked and i'm 54 soon to be 55 9/30, maybe this is the reason I was placed here, to help the new Doctors learn what treatments work well and which ones don't. Maybe this is the reason for life I have been looking for. why couldn't i be a wall painter :) or a weed picker? I do miss telling jokes and making people laugh, now i cannot even cry or laugh or ask for help. I miss that!
    thank you again
    best to you and yours

Discussion Boards