Esophagectomy

Hello all-   I recently was diagnosed with high grade dysplasia. Docs at Penn

are to perform ectomy early March. Their attitude is that this will be easy-you'll be fine- a little rough in the beginning , but then back to "normal"

What i've seen here is that this is a nightmare. What should I expect really? Whatever feedback you all could give would help.  I'm 48 and in relatively good health otherwise. Thanks everyone! 

My Dad is 68 and had the surgery in October 2007 at Univ.of Penn.  He came through the surgery really well.  He did have a hard time not drinking too fast or eating too fast.  Did not really have a hard time swallowing.  If he drank too fast, (which was normal sips for anyone else) it would come right back up.  As for eating, he just had to eat slow and take breaks.  He is still unable to eat certian foods, but that has a lot to do with the chemo & radiation treatments.  He says the surgery was not the worst he has been through so far.  Take care, and I hope this helps!

Mikef,

My husband age 51 was just diagnosed with high grade dysplasia (Barrett's eophagus). The folks on this message board are wonderful with esophagectomy questions - since this is truly major surgery, and from what I've read, there are significant changes that you will have to adapt to for the rest of your life. If it's the only option for you, you are fortunate to have access to their good advice. Another source of eye-opening information that I found was on the University of Michigan's web site for patients - http://surgery.med.umich.edu/thoracic/clinical/discharge_fol look for the PDF on esophagectomy.

We found out there are some new therapies for Barrett's high grade dysplasia. You may be a candidate for this option if this is what you have (e.g., if your high grade dysplasia is from Barrett's esophagus, thus same as my husband's). If this is what you have, you might check out these web sites for more information before you undergo esophagectomy surgery: 

Go to www.barretts-esophagus.org for information on some new therapies that are proving successful and allowing patients with this disease to avoid esophagectomy. If you have questions (and you will) scroll down to the bottom of the page and call Mary Ann at the clinic - they will help you.

Go to barrx.com for information on clinical research studies on this particular alternative therapy, as well as a "find a physician" that can help you see if there are physicians doing this procedure in your area.

Good luck, Mikef - check these out - my husband was advised to have an esophagectomy like you, because his doctors weren't familiar or trusting of the outpatient procedures that are now available, but they are approved by the FDA and shown to be 98.4% effective in eligible patients (2.5 years follow-up and counting.) We are lining up the paperwork to have this done instead of esophagectomy, but if I hadn't done the research on my own, it would never have been offered to us. Doctors want to save your life and because there's a chance that high grade dysplasia can turn into cancer, they take drastic steps quickly to protect you. However, you should check out these other options - they might be a good fit for you.

Good luck - you're in my prayers.

 

Mikef,

I absolutely agree with smbsmb. I had an esophagogastrectomy (esophagectomy) using the Ivor-Lewis approach in mid-2005. I had it done because I had stage 1 EC. My choices were limited. I am now 56 years old. I am cancer free and doing very well. I am probably in the top 10% of esophagectomy patients as far as quality of life.

However, my life is not "back to normal". I now have to eat smaller portions; that's not terrible, more of an inconvenience. ( I can eat enough to cycle lots of miles and maintain my weight). I do have pain that, so far, is not understood. At times this can be a show stopper. I would say I am 90% and not expecting to get back to 100%.

Again, I agree with smbsmb. An esophagectomy is a huge, dangerous surgery. My surgeon told me it's the biggest surgery they do unless they are putting someone back together after a car crash. You have other options to explore. Do the esophagectomy only after researching those options and deciding it's your best choice. If you choose it, do not expect to get 100% back to normal.

Please, let us know what you choose and how it goes.

In any case, KEEP MOVING. Exercise all you can.

Steve 

 

 

 

Many thanks for your thoughts and prayers. You are all in mine as well!

I have discussed the alternatives to this gruesome surgery- and I have heard the same thing from the Drs. and all the research sites. The PDT and the non-invasive surgery can miss some of the cancer cells that may be beyond the wall of the Esophagus. Which can lead to further surgeries and possible spreading. The THE surgery I'm told, will "cure" the Barretts and remove further complications. I am told that the high-grade dysplasia may well already consist of cancer cells.  Isn't it wiser (although riskier and certainly a more radical approach) to "get it out of there" ?  If I choose another approach I may be setting myself up for the inevitable, at perhaps a later time in life when I may not be able to withstand the surgery. Again- I have heard two distinctly differing views on recovery from the THE surgery. Some say "not too bad, takes some time" while others have told me the surgery and  recovery is a nightmare followed by a lifetime of misery. Any others who have had this surgery, I would love to hear how you are doing. Many thanks again and I wish every one here the best.

Hi!

In January 2007, I had an esophagectomy + they removed 1/3 of my top stomach, due to a disease called Achalasia. They replaced the esophagus with a part of my colon. My journey back to life has been really difficult, almost inhuman actually. Although I had a great and experienced surgeon I didn´t heal as planned. I had to stay in hospital for 8 weeks instead of 2 weeks that was planned. The anatomic results are satisfying to the doctors, it looks great, but it functions far from great. I had very much trouble swallowing the first couple of months, and then I got dumping problems. I had to keep the jejunum feedingtube for nine months after surgery. I still have problems maintaining weight, because of dumping (which leads to no appetite), reflux and dysphagia (trouble swallowing). I still haven't been able to go back to work, although prior the operation they said I would be back after six months. However, the doctors still have hope of spontane improvement of my condition, but I'm starting to accept that I may never get any better. My general condition though is back maybe 70-80%, but the other difficulties kind of drag me down...

I do want you to know that I've had some really bad luck that noone is to blame for, and that it's not usual that things are as difficult as they have been for me. But they can be if you're unlucky.

So, what to expect? From what I've learned, it differs widely between individuals how fast you recover, and how well you can eat. But expect a tough journey, and hope that you are not one of the few for whom it gets even tougher.

Also, choose only surgeons with great experiences in performing this operation, it's vital for the outcome.

I wish you all the best!

( If anyone has an intrest in Achalasia, I have a webpage at www.freewebs.com/esophagus )

Miikef, I've been thinking about you and keeping you in my thoughts and prayers. You're asking some good questions, the same ones that my husband and I were asking. I spent about 100 hours in the past 4 weeks researching this for my husband. I’ll share what I found, and apologize for the length. It sounds like I'm trying to sell the non-invasive ablation therapy, but please know that I'm not, really. I'm selling "being informed" and we found that my husband’s doctors really did not give him both sides of the picture. This information that I'm quoting is on reputable web sites - reports of clinical trials, in the surgical and gastroenterology medical journals, and National Institutes of Health reports. The stats are out there, just buried in tons of other information.

The top 4 things I found out are: (1) get your biopsies reviewed for a second opinion to make sure that it is really high grade dysplasia - 75% of these are WRONG and you don't want to have the surgery unelss you have to; (2) make sure that you get what they call a "staging" with an EDG, biopsies, and endoscopic ultrasound (EUS) to find any hidden cancer, or to find out how far your cancer has gone, before you decide on whether surgery is right for you; (3) if you choose ablation, pick a physician who can do more than one thing - laser ablation, Barrx ablation, endoscopic mucosal resection - so that your physician can put together a treatment plan that's right for you, the first time – otherwise you may need more treatments than the average to get it all taken care of; (4) if you choose esophagectomy, pick a surgeon and hospital combo with at least 12-30 esophagectomies a year, with less than 5% mortality rate (more about this later).

So, only you can make the right decision for you. Here are some things my husband thought were important to him in deciding which statistics to bet on: The mortality rate and complication rates for this procedure are staggering. Our surgeon said that it is a more complicated procedure than a cardiac bypass! I had no idea. You must get a surgeon who does this procedure at least 12-30 times a year at the same hospital (not just all surgeries, but ESOPHAGECTOMIES). It's not because the surgeons are bad - it's a very tough surgery to do, and it’s so rare that most doctors and hospitals don't get a lot of practice with it. The BEST surgeons have a mortality rate for this procedure of 3-5% - that means that 3-5 of every 100 people who has this procedure DIES from the surgery or complications afterwards. The worst surgeons/hospitals have a mortality rate of 23%, and the AVERAGE is 17%. Complications happen to 47% of patients. The top 3 complications are heart attacks or pneumonia after surgery, and leaks (the connection between the stump of the esophagus and the stomach springs a leak and spills gastric acid or bile into their abdomens, which causes pain and infections). These 50-50 odds of having a major complication are worse odds than developing esophageal cancer from high grade dysplasia, based on my math.

Now, for the ablation statistics: The PDT is an older and more tested but more agressive treatment than Barrx. It "burns" deeper so there are more complications from it - but the complications are still much less than the esophagectomy. With any laser or PDT or Barrx ablation,  what happens is that there can be a "stricture" or narrowing of the esohpagus from scar tissue. They fix it by stretching or dilating the esophagus back to where it is able to handle swallowing food again. Uncomfortable and unpleasant but the patient is not in danger of dying. The Barrx procedure has proven to have fewer strictures than PDT. I actually couldn't find any reported strictures in the medical literature but I actually asked one of the doctors who does Barrx, and he said that there have been a few, less than 1%, and all of these folks had really long segments of Barrett's. Barrx and other ablation methods have had no deaths, virtually no complications, except for sore throat and swalloiwng and strictures, and – now that they have learned that they have to treat Barrett’s, not just the spot of dysplasia – I couldn’t find any reported cases of cancer developing after patients were finished with treatment. It was a problem in the earlier years of ablation therapy, before they figured out what worked - and it seems logical that it's theoretically possible that cancer could grow back, especially if they didn't cure 100% of the Barrett's, but I was looking for cancer statistics, too, and couldn't find any evidence that it's a problem.

You made a good point that you've been told that sometimes the high grade dysplasia is really cancer cells or hiding cancer. Since doctors don’t play the odds with your life, and rightly so!, they probably won’t tell you that the statistics prove that not all high grade dysplasia changes to cancer, and in fact it sometimes "regresses" to low grade dysplasia. Unfortunately, the bad news is that they still haven’t been able to predict which patient will develop cancer and which one will not. I wasn't able to find good stats on how many patients with high grade dysplasia get cancer, but I did find somewhere that 1% of all Barrett’s patients get cancer in 4-6 years, and some stats show 16-23% of patients with high grade dysplasia may progress to cancer, but it’s not clear whether that’s “in 3 months" or "within one year” or “after 5-10 years” or “in their lifetime.”  Bottom line, medical science doesn’t really have good stats on how many people with high grade dysplasia process to cancer – they just know that it’s much more likely than if you didn’t have high grade dysplasia, and that once you get cancer, it’s bad, and it's their job to keep you from getting cancer if they can.   

Barrx is keeping a registry of folks who've had the procedure so that they can gather the statistics to prove that it works for the long haul. I'm betting that it will - because 98% of the patients who have had the procedure are still disease-free, 2-3 years after the procedure. If you have cancer now, maybe you don’t have the luxury of waiting to see if these first patients are still Barrett’s free and cancer-free in 5, 10, 40 years from now; if you don’t have cancer, maybe you have more options, or more time to ponder.

You may want the peace of mind knowing that you've done the huge leap of surgery to "get it out of there" and you won't have to worry about cancer again, or worry about having to have the surgery down the road when it will be tougher on you. It's a big worry to have hanging over your head! I’d strongly encourage you to call the customer service folks at Barrx (it’s on their web site barrx.com), and the Thompson Cancer Survical Center in Knoxville. They were wonderful to answer questions about options, research, pros and cons. They will talk to you even if you don't plan on going there.

Good luck.

With the new treatments, do we know if there is any danger further down the road - I mean they may seem to work now, but what if they trigger other cancers later on in life? The squamous mucosa is very delicate and sometimes SCC emerges many years after ingestion of caustic substances, so what if that happens with the new ablation techniques??

Sorry I am not being negative, I am just wondering that's all.