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Why isn't surgery offered to Stage4 patients

beowulf88
Posts: 23
Joined: Jul 2012

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

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

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
Posts: 131
Joined: Jul 2012

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.

beowulf88
Posts: 23
Joined: Jul 2012

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.

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

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

cindyruggs's picture
cindyruggs
Posts: 26
Joined: Jan 2012

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

beowulf88
Posts: 23
Joined: Jul 2012

Those seem like excellent results. Wish I could say the same. I'll have another scan in a couple of weeks and see what happens. Good luck with everything, so happy to se good news on thei site.

beowulf88
Posts: 23
Joined: Jul 2012

Hi Dave, did he have a chemo or radiation therapy to get the cancer that spread after surgery? I'm in pretty good shape after all the chemo I've had and was looking for someone who had the surgery and was a long term survivor. Just curius where the mets were and how bad?

ryoung6649
Posts: 4
Joined: Jul 2012

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
Posts: 23
Joined: Jul 2012

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

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

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

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

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

mardigras's picture
mardigras
Posts: 197
Joined: Sep 2011

Hi Chantal,
I just wanted to say how lovely it was to hear from you.
I know that we all wonder how you and Eric's wife are
faring. You were such a help to so many people and you
gave so unselfishly of your time and energy to us all.
I think about you often and thank you so much.
I wish you peace, happiness and love Chantal.
May god bless you and keep you.
Hugs and prayers
Marci x

mardigras's picture
mardigras
Posts: 197
Joined: Sep 2011

Hi Chantal,
I just wanted to say how lovely it was to hear from you.
I know that we all wonder how you and Eric's wife are
faring. You were such a help to so many people and you
gave so unselfishly of your time and energy to us all.
I think about you often and thank you so much.
I wish you peace, happiness and love Chantal.
May god bless you and keep you.
Hugs and prayers
Marci x

mardigras's picture
mardigras
Posts: 197
Joined: Sep 2011

duplicate post - sorry

NLMCEM
Posts: 52
Joined: Aug 2010

Dear Chantal, My husband did have surgery and for 1 1/2 years all his scans showed cancer free. This past week they show 5 small circles in his lungs and at this time say a biopsy is out of the question due to their size. They want to have us go on our planned 1 week vacation and come back for another pet scan and at that time make a decision if the biopsy is still not an option to start 1 of 2 possible chemo treatments. I also want Nino to have quality over quantity and your post and some of the others are what I needed to read to help me help Nino with what is best for him when he decides what he wants to do. Thank you and again sorry for your lose of Lee.
Carolyn (wife to Nino)

beowulf88
Posts: 23
Joined: Jul 2012

Hi William, as always thanks for the info. What's the difference between a jtube and a peg. I had a peg put in but had to have it taken out because it was in the way. Not something I was going to need. Does it come with a tube sticking out of you or is it not so invasive? I see a lot of talk about the jtube on this site. If I can drink a shake, what benefit does the tube give me?
Thanks, Bill

NLMCEM
Posts: 52
Joined: Aug 2010

Dear William so glad to see you are doing well. I have been so busy with my grandchild, work and Nino I have not been on here. First off thanks to you and others for making these post to give us HOPE. Nino's esophageal cancer surgery went well although he has constant pain in his side and eating is still a problem with many stretching s. Scan this week shows possible spread to lungs. The doctors say chemo will be in order. no other cancer any where else shows just the lungs. Nino had the j tube first round then surgery and the j tube was no fun for him at all, he was in constant pain from it and like you fed all night while sleeping as we could not get the rate higher then 35. They have not mentioned another j tube with this new round of chemo so we will have to see how it effects his eating. Nino is also always fatigued and unable to work. So glad to see you are still posting.
Carolyn (Ninos wife)

cherseg
Posts: 30
Joined: Jul 2007

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.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

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?

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

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

cindyruggs's picture
cindyruggs
Posts: 26
Joined: Jan 2012
cherseg
Posts: 30
Joined: Jul 2007

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
Posts: 30
Joined: Jul 2007

Apologies for not adding that.

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

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

DanTheMan
Posts: 24
Joined: Feb 2012

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:/

goty2001
Posts: 71
Joined: Jul 2012

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).

beowulf88
Posts: 23
Joined: Jul 2012

You take the xloda every day. I get a 5fu bottle every other week as well as cisplatin and toxel. Is the xloda in lieu of the bottle and what side effects does it have? You seem to be doing well. I'm on my 12th treatment and am so far so good. Not in the shape I was in when I got my DX in January but don't feel I'm losing the fight. They have removed tumours in stage 4 patients as a form of paliative care. I was just wondeering if anyone had it done and how they were doing. I read a post where he's 6 years from surgery and still around, so maybe it's an option.
Thanks for any insight you can give, Bill

jaycc
Posts: 131
Joined: Jul 2012

For my husband quality of life was very good for 6 months, but once his body could not take in the Oxyplatin , the second set of chemo had little impact. We needed to act faster,and should of had some options lined up the clock began ticking fast. Just an opinion enjoy your good days, and maybe with a help of a caregiver push to have the next options lined up.
In those tough last 2 months, he always had a clear mind, I'm gratefully for that.

Just an added note for Surgery,my husband needed 2, liver transplant (mets covered like a net over the liver (unusual), then Esphog. For the liver transplant the immune system has to be shut down, and the surgeons that turned him away felt the EC cells would grow even faster on liver transplant recovery.
So learning, don't wait to start targeted treatment of critical organs.
Sounds like others had success with radiation liver treatment and then surgery for other areas.

goty2001
Posts: 71
Joined: Jul 2012

don't get the 1 in three weeks off that many takers get. I think they think I'm able for it (sort of am so far). Just had my 2nd Ive session and had a worse reaction that before with a temperature... in fact have come back into hospital for observation but afetr 36 hrs it has mostly passed and was on day release today.

XLODA is the tablet version of 5fu. I don't thnk i got many side effects from xloda .. more from the IVtreatments (I need to start remembering the names.. one was herceptin which I switched to this round as I'm Her2 positive .. Still figuring out if that's good or bad).

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