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Why so adamant about surgery?

ptom
Posts: 33
Joined: Jun 2012

I don't understand why everyone here is so adamant about esophageal surgery being the only answer. I had three surgical opinions (yes, at reputable EC cancer centers) and all three surgeons told me that surgery is horrifically disfiguring and will change my quality of life forever. Also stated was the fact that surgery does not guarantee that the cancer will not return. I have seen proof of that on this board as it seems that at least fifty percent of patients here had surgery and are now dealing with a recurrence. Who am I to believe?

BMGky
Posts: 666
Joined: May 2010

Surgery saved my husband's life!! He is not horribly disfigured and he had the awful Ivor Lewis. He is living life to the fullest. Works everyday at his office or not if the mood not to go hits him. Took a recent trip to Brussels and Paris better than I did. Travelled to one set of grandchildren and soon to another set. In the meantime, grandchildren with their parents spent the weekend with us, went out on the pontoon boat and stayed up with us until 2 am watching old movies. Their parents went to bed.

People come up to him, who had seen him near his worst, now comment how he really looks great. One friend commented, Gee, it was bad you had cancer, but you look 20 years younger with your weight loss.

Yes, his strength is not there as it was. He's a tall man. Yes, he has to watch how he eats and which he forgets. There is no guarantee of tomorrow; however, untreated, you know for sure your tomorrows are limited.

The surgeons who told you those old wives tales should be ashamed of themselves. You can quote me to them. My husband was 70 when he had his operation. He's two years post op and his last scan showed no evidence of disease. We're very humble.
BMGky

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

I had an Ivor Lewis esophagectomy with gastric pull up in 2009. Every oncologist and surgeon I spoke to told be "you are very fortunate to be a surgical candidate". There is certainly no guarantee that surgery will result in a long term remission but the statistical experience is that it certainly improves the odds.

Ivor Lewis is the most invasive surgical approach and certainly results in some significant scars. One large one between my belly button and sternum and another large one under my right shoulder blade. But they are invisible with my shirt on, and very candidly at 63 there are not too many people who want to see me with my shirt off anyway.

It does require that you modify your eating habits, primarily smaller more frequent meals, but I can eat pretty much what I want in moderation.

When I found out I had cancer I wanted to do everything I could to improve my odds of a long term remission. If I have a recurrence at least I won't be second guessing that there was something I could have done that I did not.

Best Regards,

Paul Adams
Grand Blanc, Michigan

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!

Guigna
Posts: 71
Joined: Feb 2012

the surgery didn't slow down the cancer. But i am glad we tried. my husband's life became much more limited because of the surgery (he can't lay flat anymore; there are foods he can no longer eat) but.. without it? would he still be alive?

we took the surgery and ran with it.

Good luck!

jtebo1955
Posts: 46
Joined: Apr 2012

I can understand your confusion about surgery. I had mine in April 2011. Other than adjusting my eating habits life is pretty normal. They told me to expect lots of reflex. I've had none. Told me to sleep elevated, I did for a yr..now I don't. I have read some real horror stories. But I truly believe with the right surgeon you have your best chance. I did lose 50 lbs..which was good I had the extra weight. But feel pretty darn good now. I still worry about it re surfacing...but I'm pretty sure I would have been gone by now if I hadn't had the surgery. Hang in there and do your homework and don't be afraid to ask question and ask for references .

Best of luck,
Judy

18 months and counting

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

ptom:

I am truly amazed that three different surgeons told you that surgery would be horrifically disfiguring and change your quality of life forever. They are correct in that surgery is not a guarantee that the cancer will not return.

Here is how I would view my husband Don's situation and surgery:
Don was offered surgery as an attempt at removing all of the cancer. He went through chemo and radiation and at times it was very hard on him - the chemo more so than the radiation although the radiation was the real workhorse in Don's situation. After treatments were completed he had another series of tests which indicated the cancer had not spread at that point and that surgery was still an option to remove the tumor and hopefully all of the cancer.

There is no doctor in the world that will tell you that 100% the cancer is gone even after going through all that - it is a wait and see situation. Once you have been given the big 'Cancer' diagnosis, I suppose it is natural that one would always wonder if it is going to come back.

Don's diagnosis at the time of surgery was T3N1or2M0 - during the surgery the surgeon and pathologist determined that Don had a poor response to treatment and all indications are that the cancer is still present. We are currently in a waiting for the pot to boil situation. It is not a good situation, but it is what it is and Don copes with this much, much better than I do.

Would he do all this all over again? YES - ABSOLUTELY - Surgery is an opportunity to remove all of the cancer and put this beast to bed. Some people have success and some don't. I understand surgery or no surgery if an option is a personal choice, but I am so proud and thankful that my husband took the opportunity afforded to him; he fought the good fight and is still fighting the good fight. Will the cancer come back? Probably. Will he ever regret his attempt to get rid of it for good? NO

There are so many people who cannot have the surgery either due to other health issues or because they are Stage IV. Quite a few of them are doing great with treatments they are receiving and yet you have someone like Don where all indications were that he was a great candidate and all the work and effort appear not to have worked.

Even if a doctor had told us something like the three told you - we have continued right along as we did - horribly disfigured is a great option to the alternative. I love my husband and if he went through a fire or other disfiguring accident - I would still love him, he is my soulmate, my forever love - our hearts are forever bonded and melted into one.

As far as quality of life forever - what the hey? Once you've been told you have cancer - your life is forever changed at that moment. As far as Don's quality of life - he has a megaton of quality - bought himself a new Harley to celebrate getting through the chemo and radation and surgery and rides it every chance he gets - for him that's quality of life. For me quality of life is seeing him happy.

He eats differently and would really love to sit down and chow down a big old plate of food- but that's not going to happen. He is eating healthier than he ever has. He sleeps elevated on his leaning tower of pillows and does not look comfortable to me, but he sleeps well. We do pretty much whatever we want when we want and you can't get much more quality of life than that.

If and when the cancer comes back - he'll fight until he's had enough and we'll go from there. Until then, we say "FEC - We have things we want to do"

If I were you and surgery was an option - I'd get myself in shape - it's a big surgery and it is going to hurt, but you will get through it and hopefully, you'll be one they got all the cancer with.

Best of luck to you in whatever choices you make - this cancer is a tough one - but we fight like girls and men around here and give the cancer a tough road to haul too. We are happy you found us and sorry you had to - please come back often and ask any questions or just plain old vent if you want to - that's why were here.

Hugs and FEC,
Judy

ptom
Posts: 33
Joined: Jun 2012

Judy,

Didn't you mention in your May 9th post that Don had surgery but they didn't get it all? Would he do it all over again knowing that?

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

I agree with every word Judy said! Consider yourself fortunate that you are a surgical candidate. Second get to the best surgeon that you can! The only people that told me surgery would affect my quality of life were the ones who wanted to treat me endoscopicly not the surgeons. I had the surgery January 6th and haven't looked back. do I have a couple scars? Yes. A good surgeon and you wont even notice them a year later. The scar on my neck isn't visible unless you know it is there and look for it. You determine your quality of life not your circumstances!

I am one of the very very blessed members of this board that was "cured" of my EC by surgery alone. No radiation. No chemo. So I am a big fan of surgery. It is as I was told by an impartial Doc the "gold standard" of treatment for EC. I believed her then and I believe her now. She only had my interests at heart.

I guess the question you should be asking of the members of this board is would they do the surgery over again. Or of those who were not surgical candidates if they would have chosen surgery given the opportunity.

Dave

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Judy said....

"Would he do all this all over again? YES - ABSOLUTELY - Surgery is an opportunity to remove all of the cancer and put this beast to bed. Some people have success and some don't. I understand surgery or no surgery if an option is a personal choice, but I am so proud and thankful that my husband took the opportunity afforded to him; he fought the good fight and is still fighting the good fight. Will the cancer come back? Probably. Will he ever regret his attempt to get rid of it for good? NO"

My husband felt the same. Yes, my husband had a recurrence, and yes, I have lost him, but we had several months longer than we would have had without surgery. and most important of all, We Had a Shot at having complete remission. Something NOT possible without surgery, in my opinion and in those of the supporting stats

Terry
PROUD wife to Nick, age 49
T3N1M0 05/19/11
26 rads, 2 weeks inpatient cisplatin & 5fu
THE 09/08/11
NED until 05/11/2012
Lost battle to brain mets 05/19/2012

ptom
Posts: 33
Joined: Jun 2012

And it isn’t Tom, Mr. Bill, he’s a SHE and yes she’s real.

I was diagnosed on 7/7/11 with a well differentiated squamous cell tumor in my esophagus near the trachea junction. A PET scan on 7/20/11 showed the cancer was contained in the esophagus and no nodes were involved. A bronchoscopy biopsy came back negative. Results - T3N0M0.

I had thirty days of radiation which started on 7/27/11 ending on 9/2/11, concurrent with three weekly rounds of Cisplatin that started on 8/9/11. I also had two 96 hour rounds of 5-FU started on 8/9/11. All chemo was cancelled on 8/22/11 because my body wasn’t metabolizing 5-FU fast enough.

On 10/03/11 I had a PET scan which showed a complete response to chemo and radiation and was then classified NED.

I had my first esophageal stretch on 10/10/11 with biopsies - no trace of cancer.

On 11/16/11 I started thirteen weekly rounds of Taxol. I was only scheduled for twelve rounds but due to peripheral neuropathy they reduced dose ten and eleven to half strength. I talked the oncologist into increasing dose twelve back to full strength and then requested one more full dose (number thirteen) to make up for the two reduced doses which ended on 2/8/12.

My second stretch was on 12/5/11. Third stretch was on 1/31/12, biopsies taken, no cancer found, esophagus visually normal.

Last CT scan on 3/5/12 - NED. Next scan end of July.

Obviously I'm concerned about the doctors’ decisions or I wouldn’t have posted my question, and I certainly never expected to get slammed for it. William, I've been a "Peeping Tomasina" on this site long enough to understand how much you want to help people but you need to work on your bedside manner. You can get your point across without insulting a person's intelligence or the physicians they choose to see. You know the old saying about honey versus vinegar, right?

And no, no doctor in their right mind would give guarantees. I’m smart enough to know that with esophageal cancer there are no guarantees. What the doctors did say was that recurrence rates are the same with or without surgery. If you can show me stats that prove otherwise, well I guess you were right and per your comments, I better start writing my obit.

ptom

P.S. No, I don’t have all my teeth. I lost most of them after surviving Duke’s Stage 3C colon cancer 18 years ago at the ripe old age of 36.

BMGky
Posts: 666
Joined: May 2010

Following chemo/radiation which is no picnic as you well know. PET scan came back clear. No surgery? Wrong. Doctor says the trimodal approach is the current best practice approach and my husband must have the surgery even with a clear scan.

As I have posted many times, following the removal of his esophagus, the biopsy showed hidden by scar tissue, were live cancer cells!! If he hadn't had the surgery, he wouldn't have survived. And I say again, our oncologist emphatically stated upon reviewing the results, "That's the reason we do the surgery!"

With you good results from chemo, but considering your diagnosed stage and nodular involvement, if your medical status now allows it and there are not other factors mitigating against surgery, go for it, yesterday.

Don't be too hard on William. He knows what he is "talking" about. While we all want to hear, "There, there. It's going to be okay." To minimize the dire consequences so as as assuage possible hurt feelings may lure a potential survivor (for whatever period) into complacency and delayed action. I want to know truth, and William speaks it. You don't mess around with EC 'cause it sure will mess with you.

Keep us posted on your decisions and how you are doing. If we can be of help, we will try. Good luck! BMGky

llamp0922
Posts: 40
Joined: Jul 2010

Like PTom, I had a squamous cell carcinoma, high up in the esophagus. My tumor had invaded the trachea, and obstructed 50% of the trachea. I was inoperable, due to the tracheal involvement. Perhaps that is what her surgeons referred to when discussing how disfiguring the surgical intervention would be. My team bluntly told me that surgery could not be done because the trachea can’t be removed or cut out. Maybe the location of the cancer eliminated the surgical option???

I desperately wanted the surgery because I felt that it offered the best chance of survival.
I was diagnosed 7/13/07, did concurrent IMRT radiation (39) and cisplatin/5-FU through 11/07, and have had CT scans regularly since then. It will be 5 years in July. Each day is a blessing. There are some of us survivors out here that didn’t have surgery. Stay positive!
Lisa

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

Tomasina (I love that!):

I am Stage 1 and I, too, had an MIE with no chemo or rads. I’ve been dealing with EC for about 11 months now, and I’ve been active on this board since September. I know William can be blunt, but I agree with you that he always has everyone’s best interest at heart.

But I also have to agree with most of the responders to your post, and I wonder what the heck the surgeons you talked to were talking about when they told you an Esophagectomy is “horrifically disfiguring and will change my quality of life forever.” Neither of those things is true for me, and rarely have I read of someone on this board for whom that is true. Yes, some folks have worse digestive issues than others and several have talked recently about a persistent cough, but change your quality of life forever? Hardly, in most cases. It changes your life somewhat, but not your quality of life.

In my case, my surgeon, Dr. Chris Morse at Massachusetts General Hospital, trained with Dr. Luketich at UPMC and had performed over a 125 MIE’s when he did mine. Like William, I have a series of very small incisions across my abdomen that my wife recently told me are hardly visible anymore, and 1 about 1½“ long on my back...hardly “horrifically disfiguring”! Now, that’s my case, and I don’t even know if you’re a candidate for an MIE, but even the responders who had the THE or the full Ivor Lewis have said their scars aren’t pretty but also aren’t a real big deal. And if the doctors are so confident that you’re NED long term without surgery, why are they still prescribing all of that chemo? I’m no doctor, but I don’t get it.

As for my quality of life, I eat slightly smaller and more frequent meals, there are a very few things that I can’t eat anymore, and sugar can be a problem. I do have to be aware of my bowels all the time, and while I haven’t had any “accidents” there have been times that I haven’t been able to stray far from the nearest toilet. But those are the only quality of life changes I can think of, and life for me is really good! I’m riding in a 2 day, 192 mile bicycling fundraising event in August for cancer research, which requires me to ride 6 days a week in training: last week I rode my bike 124 miles and this week I’ll ride at least 140 miles. I rode in the same event in 2010 and I’m riding it again this year, so I don’t see any dramatic change in my quality of life there.

I could go on and on, I suppose, but the main thing I wanted to say is just that you got bad advice from the particular doctors you talked to. Your case is undoubtedly different from mine, or Cap’n Dave’s, or Nick’s or William’s, and you of course have to make your own decisions based on the advice you get. And maybe for any one of a number of reasons surgery isn’t appropriate for you. But please don’t believe that you would be horrifically disfigured or suffer a dramatic decline in your quality of life, because that’s just not been the experience of the majority of contributors to this board. I don’t know if our little family is statistically representative of EC patients as a whole, but I have to believe we’re a big enough sample for our collective experience to be at least somewhat significant.

The bottom line, though, is Congratulations on your continuing NED, however you got there. Long may it continue!!!

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

Guigna
Posts: 71
Joined: Feb 2012

it helps to get a specialist. Shop around! our surgeon deals with esophageal cancer every single day. He is very good at deciding who should and shouldn't have surgery.
And today, 8 months post op, my husband's scars don't look near as scary as they were.

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

Bob, Very well said. Thank you for putting some of my thoughts and feelings into words for her.

Dave

crystalbay
Posts: 39
Joined: Aug 2010

I'm a two-year survivor of Stage 3 EC (T2 N1 M0) and have thoroughly researched every possible
treatment of this aggressive cancer. My Mayo surgeon does 40 esophagectomies a year and the hospital handles 200 patients annually who've had this surgery. I have yet to encounter any medical professional or research which does NOT indicate that having the surgery is statistically-proven "best option". I guess it comes down to enduring the after-effects of this surgery or risking an early death from this cancer. There's no such thing as a "guarantee of cure" with this or any other cancer, but research has solidly proven that having the surgery extends one's life. If this matters, you wouldn't consider forgoing surgery.

I'm in no way "horribly disfigured"! Sure, I have two surgical scars running down my belly and around my shoulder blade in back, but I'm ALIVE to enjoy my life. There are very few other issues and those there are in no way negatively impact my life's quality. I've had six clean PET scans at this point and, other than being quite slender for the first time in my adult life, I'm able to do all & more than I've ever done.

GerryS's picture
GerryS
Posts: 238
Joined: Aug 2010

Paul's comments are exactly what I experienced. I am a two year survivor and much credit goes to the surgery. It is tough, takes time to heal, but the outcome is worth it. I eat most anything now,just not as much. Good luck.... a few scars, so what!

Gerry

mrsbotch
Posts: 377
Joined: Oct 2010

I have been on this site for about 2 1/2 years. Never once has anyone said that if given the opportunity they would not do surgury.
Being at a stage that you still have the option to do surgury is a blessing in itself.
You seem quite angry about some of the answers you are getting on this site. Most of the people here have gone thru HELL and still are as either caregivers, the EC patients themselves, or we are widows who have lost our spouses and do not want others to go thru what we have. Sure surgury may not always work, but IT IS your best shot. My husband had the surgury and still died but in his case the chemo killed him.

William has been on this site forever. He DOES NOT HAVE TO BE HERE. He is a survivor who could be out having a great time enjoying all the extra Years he has been given. BUT he chooses to help all of us. Please do not come on here and critisize. We have been thru too much misery to be judged.

I truly hope you get the help and answers you want. But remember we care and if you read just a portion of. The posts here you would know that.

I too question that you are credible by the things you have said.

Barbara

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