Why isn't surgery offered to Stage4 patients

beowulf88
beowulf88 Member Posts: 23
I've been reading a lot of the older posts and it seems that I should request surgery to have the tumor removed from my esophagus. This is considered pallative care. I was wondering if anyone with stage 4 had the tumor removed and what the ramifications were. I think it would be better if I was able to eat a full meal. Just curious, I want to explore all my options. When 1st diagnosed I was told by the surgeon at Sloan that he wouldn't see me again. Disturbing as it was, I accepted the prognosis. Any info would help.
Thanks, Bill
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Comments

  • captdave
    captdave Member Posts: 153
    I personally only know of
    I personally only know of one stage IV who has had surgery and that is my cousin. In fact I just saw him yesterday and we were talking about our surgeries and our surgeon. Any way, he had his surgery I believe six years ago and is doing well. His surgery was performed at the VA hospital in Seattle by University of Washington Surgeon Mike Mulligan. Now I can speak of Dr. Mulligan's skill as he was also my surgeon. He is in my opinion a rock star! There are surgeons out there who will operate on stage IV EC patients although I'm sure they have a very specific criteria on who is a surgical candidate at stage IV.

    Dave
  • jaycc
    jaycc Member Posts: 122
    captdave said:

    I personally only know of
    I personally only know of one stage IV who has had surgery and that is my cousin. In fact I just saw him yesterday and we were talking about our surgeries and our surgeon. Any way, he had his surgery I believe six years ago and is doing well. His surgery was performed at the VA hospital in Seattle by University of Washington Surgeon Mike Mulligan. Now I can speak of Dr. Mulligan's skill as he was also my surgeon. He is in my opinion a rock star! There are surgeons out there who will operate on stage IV EC patients although I'm sure they have a very specific criteria on who is a surgical candidate at stage IV.

    Dave

    Stage IV Surgery
    Where else is your cancer ?
    I can only comment on the flip side. My husband did not have surgery and was told several times it was not an option. It was not enough, its a tough decision but it should be yours not the doctors. Push hard to hear the options, so you can hear the information and decide what is best for you.
    FYI- Fox Chase and Abington are also hesitant, perhaps check with Boston and Penn.
  • ryoung6649
    ryoung6649 Member Posts: 4
    My husband has stage 4 and Sloane would not operate
    He has since had additional chemo and still is taking xeloda.
    His last PET scan showed no more mets in the liver and the tumor in the esophagus has shrunk. he still has a bit of trouble swallowing at times but usually eats ok.
  • beowulf88
    beowulf88 Member Posts: 23
    jaycc said:

    Stage IV Surgery
    Where else is your cancer ?
    I can only comment on the flip side. My husband did not have surgery and was told several times it was not an option. It was not enough, its a tough decision but it should be yours not the doctors. Push hard to hear the options, so you can hear the information and decide what is best for you.
    FYI- Fox Chase and Abington are also hesitant, perhaps check with Boston and Penn.

    I have mets to liver, bones
    I have mets to liver, bones and lymph nodes in the back of the stomach. I asked the Doctor today and he said the surgeery takes too much time to recover from. I consulted with Mt Siani and got the same answer.
  • beowulf88
    beowulf88 Member Posts: 23

    My husband has stage 4 and Sloane would not operate
    He has since had additional chemo and still is taking xeloda.
    His last PET scan showed no more mets in the liver and the tumor in the esophagus has shrunk. he still has a bit of trouble swallowing at times but usually eats ok.

    t that point I can make a
    i'm having another scan in 4 weeks, at that point I can make a decision if I want to keep up the chemo or take a break. Any thoughts on stopping chemo to try and live normally unitl the tumor grows again? The chemo stabilized the tumor so I can eat soft stuff and lots of soup. Has anyone out here taken a break from chemo and restarted it? Results? Issues? What is xeloda?
    Thanks, Bill
  • TerryV
    TerryV Member Posts: 887
    beowulf88 said:

    I have mets to liver, bones
    I have mets to liver, bones and lymph nodes in the back of the stomach. I asked the Doctor today and he said the surgeery takes too much time to recover from. I consulted with Mt Siani and got the same answer.

    Forgive me as this is only opinion, not knowledge
    Surgery is something that gives back time, not takes it away. The answer of surgery taking too much time to recover from doesn't make sense to me.

    I would have guessed that surgery is not suggested for a Stage IV patient due to the cancer being so widely spread that the likelyhood of capturing every "loose" cancer cell would be very small. So the frequency of quick recurrence, I would think, would be high. Therefore, surgery would not be suggested.

    As I stated in the title though - this is only my opinion. NOT fact.

    Terry
    PROUD wife to Nick, age 49
    dx T3N1M0, 05/19/11
    26 rads & 2 weeks inpatient Cisplatin & 5FU
    THE, 09/08/11
    Clean Path, 09/13/11
    2 NED scans
    Brain mass found 05/11/12
    MRI found 3 brain tumors, a tumor "dust" covering the back of the skull and Leptomenengeal disease (cancer in the spinal fluid)
    lost battle to FEC 06/19/12
  • cherseg
    cherseg Member Posts: 21
    Cryotherapy and Varian Radiation
    Hi Bill, I rarely post here, but try to keep up with the people that I know and care about who DO post here. After reading your post, I thought I might have information that might be helpful to you.

    My husband was a stage 4 patient (dx in 2007), and he survived 2 years longer than the doctors predicted. At his request, they agreed to administer cryotherapy and a special kind of radiation (Varian Trilogy) to reduce his tumor, so that he could eat.

    He had both therapies at Moffitt Cancer Center in Tampa, with good results. He was able to eat and enjoy a good quality of life after these treatments. His radiation was a new delivery system, it is called Varian trilogy, here is a link:

    http://www.cancercenter.com/video/treatments-technology/varian-trilogy

    If you Google cryotherapy esophageal cancer, you'll get a wealth of information.

    I hope this information helps you, my heart goes out to you and your family.
  • beowulf88 said:

    t that point I can make a
    i'm having another scan in 4 weeks, at that point I can make a decision if I want to keep up the chemo or take a break. Any thoughts on stopping chemo to try and live normally unitl the tumor grows again? The chemo stabilized the tumor so I can eat soft stuff and lots of soup. Has anyone out here taken a break from chemo and restarted it? Results? Issues? What is xeloda?
    Thanks, Bill

    This comment has been removed by the Moderator
  • cherseg said:

    Cryotherapy and Varian Radiation
    Hi Bill, I rarely post here, but try to keep up with the people that I know and care about who DO post here. After reading your post, I thought I might have information that might be helpful to you.

    My husband was a stage 4 patient (dx in 2007), and he survived 2 years longer than the doctors predicted. At his request, they agreed to administer cryotherapy and a special kind of radiation (Varian Trilogy) to reduce his tumor, so that he could eat.

    He had both therapies at Moffitt Cancer Center in Tampa, with good results. He was able to eat and enjoy a good quality of life after these treatments. His radiation was a new delivery system, it is called Varian trilogy, here is a link:

    http://www.cancercenter.com/video/treatments-technology/varian-trilogy

    If you Google cryotherapy esophageal cancer, you'll get a wealth of information.

    I hope this information helps you, my heart goes out to you and your family.

    This comment has been removed by the Moderator
  • Amjosmom
    Amjosmom Member Posts: 212
    unknown said:

    This comment has been removed by the Moderator

    I'm curious...
    William, who has the longest Stage IV survival rate that you have seen here? You have been here the longest and I'm curious to see what the longest some have survived. You said that Cherseg had the husband with the longest survival time here. Are there others? I hope with the others that post here that we can come up with a common... SOMETHING... that works for everyone. There has to be something to improve their chances, right? I know that EC affects everyone differently, but there has to be ONE thing they share that can help. All the side effects seem to be the same when dealing with neuropathy, and stomach pain, and weakness... so I come EVERY SINGLE DAY here sometimes 2-3 times a day looking for posts that I can relate to with my Dad, and I just am holding out hope and praying that we find a way... a way to reverse the disease! It has to be possible. With so many minds of docs, patients, caregivers, observers, friends, lookyloos... there has to be SOMETHING.


    Am I crazy?
  • Daisylin
    Daisylin Member Posts: 365
    unknown said:

    This comment has been removed by the Moderator

    stopping chemo
    William is so very right!! Before you decide anything about chemo, get a jtube put in. This may seem like an icky thing to to, but trust me, and the others who've had experience with it. Your energy levels and overall feeling of well being will improve. You will tolerate treatment better. We had to fight tooth and nail to get one in, but being a blabbermouth persistent nag finally got us one! Thanks of course to the people here who counselled us and told us more than our doctors ever did.

    As for chemo, I am Chantal, wife of LeeinLondon that William mentioned above. He was affected horribly by chemo, and his life during treatment was miserable. Once he finally decided to stop chemo it was too late for quality. Of course, this is not the case for everyone, people seem to tolerate it differently for whatever reason. I have not updated my 'about me' page recently, but it may be a bit more informative than Lee's as far as his treatment plan. Up until our dear friend Chemosmoker came along discussing his choice not to have any chemo ever, we did not even consider it as an option. Now, in retrospect, I wish that Lee had made that same choice. He passed away in November, at the age of 49. He may have been afforded some quality time had he chosen no chemo. In his case, he got neither quality or quantity. From what we know of Eric (chemosmoker) he had about the same life span as Lee, but far more quality. It's completely a personal decision, and everyone handles the drug differently.

    And finally, about surgery, we were told pretty much exactly what TerryV said. Even if they were to remove the esophagus the cancer is still going to be there, in the case of a stage iv. They don't see much point performing surgery if they can't remove all of the cancer. In your case, as with my husband as well, it had spread too distantly.

    I have not posted here very often since I lost Lee, I have been trying to read most of the posts, but it's just so hard having to re-live this nightmare over and over again. Please know, I think of all of you often and pray that you all will beat this, and move on to better days.

    be well my dear friends,
    Chantal
  • AngieD
    AngieD Member Posts: 493
    Amjosmom said:

    I'm curious...
    William, who has the longest Stage IV survival rate that you have seen here? You have been here the longest and I'm curious to see what the longest some have survived. You said that Cherseg had the husband with the longest survival time here. Are there others? I hope with the others that post here that we can come up with a common... SOMETHING... that works for everyone. There has to be something to improve their chances, right? I know that EC affects everyone differently, but there has to be ONE thing they share that can help. All the side effects seem to be the same when dealing with neuropathy, and stomach pain, and weakness... so I come EVERY SINGLE DAY here sometimes 2-3 times a day looking for posts that I can relate to with my Dad, and I just am holding out hope and praying that we find a way... a way to reverse the disease! It has to be possible. With so many minds of docs, patients, caregivers, observers, friends, lookyloos... there has to be SOMETHING.


    Am I crazy?

    Chemo Breaks
    Bill, my husband, Larry, was diagnosed with Stage IV EC in June 2011. He was on Xeloda and Oxaliplatin from July until just before Christmas. After the first round, his swallowing issues went away, so he has never needed a tube. His first chemo break was unplanned. In January, the very day before he was to start on Taxol, he had coughing and difficulty breathing. A trip to ER showed fluid in his lungs due to heart issues not EC. He had no cardiac history, but tests indicated he needed a quadruple bypass. Thankfully, the cardiac surgeon did not write him off just because he was a Stage 4. He sailed through the bypass surgery and began cardiac rehab. A CT scan in March was amazingly enough improved over the previous one done in December.

    In mid-March, after being off chemo for 3 months, he started weekly Taxol for 11 weeks. The CT scan after that was "dramatically improved," So he is on a planned chemo break now until he has more scans in September.

    We are so grateful for the way he has responded to treatment and are just trying to take and enjoy each day as it comes.

    Angie
  • TerryV
    TerryV Member Posts: 887
    Daisylin said:

    stopping chemo
    William is so very right!! Before you decide anything about chemo, get a jtube put in. This may seem like an icky thing to to, but trust me, and the others who've had experience with it. Your energy levels and overall feeling of well being will improve. You will tolerate treatment better. We had to fight tooth and nail to get one in, but being a blabbermouth persistent nag finally got us one! Thanks of course to the people here who counselled us and told us more than our doctors ever did.

    As for chemo, I am Chantal, wife of LeeinLondon that William mentioned above. He was affected horribly by chemo, and his life during treatment was miserable. Once he finally decided to stop chemo it was too late for quality. Of course, this is not the case for everyone, people seem to tolerate it differently for whatever reason. I have not updated my 'about me' page recently, but it may be a bit more informative than Lee's as far as his treatment plan. Up until our dear friend Chemosmoker came along discussing his choice not to have any chemo ever, we did not even consider it as an option. Now, in retrospect, I wish that Lee had made that same choice. He passed away in November, at the age of 49. He may have been afforded some quality time had he chosen no chemo. In his case, he got neither quality or quantity. From what we know of Eric (chemosmoker) he had about the same life span as Lee, but far more quality. It's completely a personal decision, and everyone handles the drug differently.

    And finally, about surgery, we were told pretty much exactly what TerryV said. Even if they were to remove the esophagus the cancer is still going to be there, in the case of a stage iv. They don't see much point performing surgery if they can't remove all of the cancer. In your case, as with my husband as well, it had spread too distantly.

    I have not posted here very often since I lost Lee, I have been trying to read most of the posts, but it's just so hard having to re-live this nightmare over and over again. Please know, I think of all of you often and pray that you all will beat this, and move on to better days.

    be well my dear friends,
    Chantal

    Hugs to you, Chantal!
    Just want you to know that I think of you often and hope you are well. I even replay your wedding video every now and then. What a beautiful piece of your lives that Lee shared with us when posting that link! And the talent he had - WOW! You must be so greatful that he put such a beautiful video together for you to hold those wonderful memories close.

    You both brightened my life. Thank you!

    Love and many, many hugs!

    Terry
  • cherseg
    cherseg Member Posts: 21
    unknown said:

    This comment has been removed by the Moderator

    Hi "Kids"
    Since you are both so young at heart, I MUST call you "kids"!!!

    Hope all is well, think of you so often and so delighted William is doing so great! I still read the posts here, my heart breaks for all the new folks, because I know where they are coming from and where they are going. If I think I can help, I'll add a post. Big Hugs to you both, Cheryl
  • cherseg
    cherseg Member Posts: 21
    cherseg said:

    Hi "Kids"
    Since you are both so young at heart, I MUST call you "kids"!!!

    Hope all is well, think of you so often and so delighted William is doing so great! I still read the posts here, my heart breaks for all the new folks, because I know where they are coming from and where they are going. If I think I can help, I'll add a post. Big Hugs to you both, Cheryl

    This post was meant for Bill and Loretta
    Apologies for not adding that.
  • DanTheMan
    DanTheMan Member Posts: 24
    im a survivor
    I was diagnosed in june 2010 with stage 4 inoperable esophageal cancer with distant lymph node involvement...im only 37 years old and reasonably fit(well i was at the time) the surgeons and oncologist etc never once said it was a situation where they would operate.I just learned to accept it and deal with the fact.I think it was the size of the tumour,the position of the tumour,the fact that the cancer had spread and the operation has a high mortality rate and didnt really have any advantage to beating the type of cancer when it is at such a late stage.I was treated with 28 days of radiation and 2 rounds of chemo and still surviving well after 2 years with not too much physical drama so i guess im one of the lucky ones so far:)I dont know what my 5 year survival chance is and i would sure love to know if anyone is surviving that is 5 years post treatment (without the operation) where the cancer had metastasized to other parts of the body such as lymph nodes etc:/
  • captdave
    captdave Member Posts: 153
    unknown said:

    This comment has been removed by the Moderator

    William, As I had mentioned
    William, As I had mentioned in a post on this thread I have a cousin that is going on over six years after being diagnosed stage IV and having surgery here in Seattle. I don't know all of the particulars of his case but do know that he is doing well and saw him this past Sunday at my mothers wedding reception. He had a very talented surgeon and I'm sure a highly unusual and probably unique case but, none the less he was operable and had a very successful out come. He is the only stage IV that I've heard of being a surgical candidate and having such longevity after being diagnosed stage IV.

    I will try to get more information from him on his particular circumstances if you would like more information/details.

    Keep up the good work,

    Dave
  • cindyruggs
    cindyruggs Member Posts: 24
    beowulf88 said:

    I have mets to liver, bones
    I have mets to liver, bones and lymph nodes in the back of the stomach. I asked the Doctor today and he said the surgeery takes too much time to recover from. I consulted with Mt Siani and got the same answer.

    My husband is stage IV
    My husband is stage IV


    My husband Rocky is stage IV and was DX on October 4, 2011. He has had clean scans since the end of January. We are going on 10 months, so he has already outlived the prognosis that was first given. He has only missed a couple of days of work due to chemo, he eats anything he wants, he has no issues swallowing, and most days you would never know he is sick. He lost 20 pounds initially with the harder chemo but has put most of that back on now even though that was weight he needed to lose :-).

    You can read more of the details in the about me section. We were told that surgery was not an option due to over 17 lymph nodes being involved and massive liver mets. They could not even distinguish his liver there were so many mets. All scans to date show NED, that's a WOW! That is also a big praise! We do not know how much longer the remission will last, that is the hard part. The doctor told us the other day we are beating the odds, who know's remission might last years. That was a first from our doctor who tends to be brutally honest. The fact is, none of us know. We take each new day as it comes, pray and make memories while we can.

    Cindy
  • cindyruggs
    cindyruggs Member Posts: 24
    Amjosmom said:

    I'm curious...
    William, who has the longest Stage IV survival rate that you have seen here? You have been here the longest and I'm curious to see what the longest some have survived. You said that Cherseg had the husband with the longest survival time here. Are there others? I hope with the others that post here that we can come up with a common... SOMETHING... that works for everyone. There has to be something to improve their chances, right? I know that EC affects everyone differently, but there has to be ONE thing they share that can help. All the side effects seem to be the same when dealing with neuropathy, and stomach pain, and weakness... so I come EVERY SINGLE DAY here sometimes 2-3 times a day looking for posts that I can relate to with my Dad, and I just am holding out hope and praying that we find a way... a way to reverse the disease! It has to be possible. With so many minds of docs, patients, caregivers, observers, friends, lookyloos... there has to be SOMETHING.


    Am I crazy?


  • goty2001
    goty2001 Member Posts: 71
    neither surgery nor radiotherapy
    I thought that was the definition of stage IV .. ie IV is synonomous with inoperable? I've been told mine is too advanced for either surgery or radiotherapy. How do I go about challenging that? In the meantime, a quasi Gerson type regime is keeping me actually very fit & healthy (although only 2 weeks into chemo & daily 3000mg xloda).