My sister was diagnosed today. Is the Mayo the best place for surgery.

Posted by reneemb @reneemb, Sep 29, 2023

My sister needs surgery for the cancer. It is in all 4 layers and hot the lung tissue. Is the Mayo the best place?

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

I tend to look at our EC journeys in separate stages. The ability to get quickly dx'd (and a full and complete diagnosis) is one thing. Having knowledgeable oncologists and a tumor board to prescribe treatments and plan of attack... is another. Expertise in dealing with EC... many many cases of EC... is paramount. But doing treatments... in this case maybe just a chemo regimen (is she stage 4? Or just growth thru the esophagus, but no spread yet outside?) Can typically be done anywhere. A bag of chemo is a bag of chemo... can be administered anywhere.

But surgery (esophagectomy) is a separate ballgame. It is worth shopping for... this is about as complex a surgery as there is... open heart surgery is child's play by comparison. You want a surgeon who has done many. What is many... doesn't have to be 3 a week... but don't want it to be 5 a year either. And all surgeons aren't proficient at all the different ways this surgery can be done. But what does matter is that they are proficient at the way they know how to do it!

So... first things first. Can your sister even get to surgery? That will be determined in 2 to 3 months, as her treatments are done and she is then re-scanned to be sure all is looking as it should to get to surgery. But right up front her doctors will tell her if she, at this point in time, is a surgery candidate. And this can change, either way, as she progresses thru treatments.

So... the question is... is Mayo a good place to be for ALL her esophageal cancer care? I did not do any of my care at Mayo as I'm in southern California and did all of my stuff just 15 minutes from my house (I lucked out!)

But yes... Mayo is first rate... a good place to be for the entire EC journey.

Be well... and all the best.

Gary

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I was diagnosed very early stage cancer but it had spread through my throat. The oncologist put a plan together quickly for radiation/chemo and I advanced as far as having the body mold made for the radiation treatment before a thoracic consult and another (5th?) EGD suggested that surgery was the best option. My surgeon in Springfield, IL. was very direct about how dangerous and aggressive/brutal the surgery is but felt the benefit outweighed the risk. And he not only performed the operation perfectly but was hyper attentive and cautious with my care for the twelve days I was in the hospital and followed up by phone (even after he went on vacation!) for several days after my release. Let me emphasize I saw this surgeon every single day for 12 days after my operation. He took no days off from my care. He called me from a taxi while on vacation in the islands. Simply remarkable compassion and care from a city hospital doctor. Mayo is certainly a fine facility and they have treated me years ago for another health issue very successfully but I was pleased that they do not have the monopoly on excellent surgeons/human beings. I was incredibly fortunate at a time in my life when I wasn't feeling very fortunate!

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I was treated at Mayo Phoenix and couldn't say enough about the quality of care. There are a few features I would recommend when seeking world class care. If possible, get your radiation done at a facility that has proton radiation, particularly pencil beam. It is much more targeted on the tumor and easier on the patient. Second, try and get Minimally Invasive Surgery with robot assisted. Really cuts down on the incisions and improves healing. Also, look into cryoablasion for pain management. They freeze the nerves that run between the rib cage on the right side instead of using an epidural. I experienced zero pain.

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Gary's advice, above, is correct, in my opinion.

My wife decided on having her esophagectomy performed by Shanda Blackmon at Mayo/Rochester. Excellent choice for many reasons. You will find interviews with Dr. Blackmon online.

Dave

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Acted quickly ! Is she PDL1 + immu before and after surgery ?

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@dave640

Gary's advice, above, is correct, in my opinion.

My wife decided on having her esophagectomy performed by Shanda Blackmon at Mayo/Rochester. Excellent choice for many reasons. You will find interviews with Dr. Blackmon online.

Dave

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I received my esophagectomy surgery @ Mayo / Rochester in 2020 by Dr. Dennis Wigle and his excellent team. Was a guest of theirs for 2 weeks (was supposed to be only 1 week but contracted infection in the drainage tube after it was removed). I am so very pleased with their care!!!!
Good luck to us all in our adventures,
Lori

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@lori57216

I received my esophagectomy surgery @ Mayo / Rochester in 2020 by Dr. Dennis Wigle and his excellent team. Was a guest of theirs for 2 weeks (was supposed to be only 1 week but contracted infection in the drainage tube after it was removed). I am so very pleased with their care!!!!
Good luck to us all in our adventures,
Lori

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That's interesting. My wife experienced a faulty J-tube insertion, which caused a serious infection.

Dr. Blackmon and her team (including the team of nurses at St Mary's) were absolutely wonderful. I highly recommend them.

Even so, I would say there is room for improvement, even at Mayo. My wife's infection was avoidable.

Dave

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Dave,
I had no problem with J tube at all with the above surgery................ however......... when I went back to Mayo to have #2 J tube inserted for #2 diagnosis of throat cancer just a few months ago........that was a damn nightmare!!!!! Real bad infection that refused to clear up, even with multiple antibiotics (topical & oral), wound specialist, my local Dr. removed the original stitches and replaced (cleaned the wound up and restitched) cleared up within a few days. Then on a Sunday morning the tube fell out anyway. I was so relieved and worried at the same time. I needed that J tube for sustinence (already had all the paraphanalia for it). I wasn't about to go back and have it reinserted so I just dealt with it the best I could. Throat was raw, mouth was sore from daily radiation. I went through ALOT of Magic Mouthwash (oral lidocaine) so I could eat & swallow. Hell of a diet plan!!!
I'm once again cancer free!!!!!!
(I'm praying this time it's longer than 3 - 4 yrs)
Trying to live the dream,
Lori

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@reneemb, if your sister would like to request a consult at Mayo Clinic, here's where to get started http://mayocl.in/1mtmR63

How are you and your sister doing with this news? It's a lot to take in.

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Although we hear Mayo is top notch, we were closer to and recommended to UCLA Dr Yanagawa and Dr Girgis. This place and these surgeons with their teams are phenomenal !! We are being discharged today after my husbands esophagectomy surgery 8 days ago and we have been amazed at their care here as well a the surgeon’s attentiveness . Both teams ( many interns ) are not annoyed by many questions and teach at every opportunity so we have understanding of this process. My husband had 6 weeks of chemo and radiation back in May through June and this was the last leg of the journey. They gave us the great news that the pathology report from all the esophageal and lymph node tissues is CANCER FREE!!! Praise God!
Now for the healing from this surgery. He, too, has a J tube with feedings that is a little different from his G tube he used before. After the swelling from the radiation went down in August he was able to gradually work up to eating meals again. A final pastrami sandwich last week a couple days before this surgery! We start slowly again with nothing by mouth for 4 weeks but he can do this!
Praying this is the last of cancer and surgeries! Stay strong everyone!
Patti

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