Need help with possible referrals. Please.

Posted by mk52dk51 @mk52dk51, Sep 26 8:59am

I've posted our story before. The update:
My husband Dave had surgery on April 24th after Chemo and Radiation - a new conduit was created using his colon as the stomach tissue was not viable. The esophagus was removed and biopsied - no cancer visible (there had been 2 tumors - larger one distal, smaller one proximal). After 2 months in the hospital with leaks etc, he came home late June on a feeding tube. He did pretty well till Aug 18th when he started having very frequent vomiting. He was admitted back to hospital on Sept 3rd to run tests that were taking too long as an outpatient. He has a right alignment at the distal end of the conduit - possibly a redundant conduit. (I'm still learning). The only choice is another major and more complicated surgery, possibly using his small intestine which, again, doesn't come with its own blood supply. He agreed to surgery but now has to "get on the schedule". He's back on 1500 ml's of formula and NPO. He still vomits/spits up whatever mucus or secretions build up with no where to go.
One of the members of this group suggested we contact Dr Shanda Blackmon of Baylor, formerly with Mayo. I have and am awaiting a response. Our current surgeon is the best in Colorado, so we've been told, and he is also reaching out to other colleagues.
Is there any other facility or Doc you would recommend I contact? I do have faith in our surgeon but this complication is not something he deals in very often.
Any help/advice will be so appreciated.

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

mk52dk51 | @mk52dk51 | Sep 27 11:24am

In reply to @goldenshadow "Hi Scott here I am from Colorado also. I’m sorry for what your husband is going..." + (show)

@goldenshadow
Where did you have the surgery? There are lots of Dr Shahs in the Denver Area. Let me know either first name or hospital affiliation.

THANKS!

dillknox | @dillknox | Sep 27 11:32am

Are you able to consider M D Anderson Cancer Center in Houston? Within 4 days of contacting them I was assigned a lead team doctor and was asked to be there 7 days later. And then a plan was in place quicker than I could have imagined. You might look into med-evac services in your state. There may be a "flying angel" service that provides this transport service based on need and ability to pay, perhaps free depending on your circumstances. Wishing you a solution and peace of mind soon.

goldenshadow | @goldenshadow | Sep 27 2:16pm

In reply to @mk52dk51 "@goldenshadow Where did you have the surgery? There are lots of Dr Shahs in the Denver..." + (show)

@mk52dk51 So Dr. Kishore Shah was my oncology surgeon and Dr. Mitchell was my thoracic surgeon I had my operation at St Joseph hospital on January 3rd. Dr Shah also putt my j tube in. They were great they have worked together many times. They were very attentive checking on me multiple times daily. I couldn’t have asked for better surgeons. Hope you find someone soon best wishes Scott

goldenshadow | @goldenshadow | Sep 27 2:18pm

Sorry Dr. Parth Kishore Shah

Colleen Young, Connect Director | @colleenyoung | Oct 8 4:06pm

In reply to @mk52dk51 "Thanks so much. Unfortunately, I did connect with the Phoenix clinic and learned they are not..." + (show)

@mk52dk51, you probably already have this information, but just in case:
To find out if your insurance is accepted in Rochester or Jacksonville, and to ask your questions about paying out of pocket, please contact Billing & Insurance https://www.mayoclinic.org/billing-insurance

Patient Account Services representatives are available to assist you with the financial aspects of care at Mayo Clinic. Please contact them here https://www.mayoclinic.org/billing-insurance/contact-us

mk52dk51 | @mk52dk51 | Oct 9 5:42pm

In reply to @colleenyoung "@mk52dk51, you probably already have this information, but just in case: To find out if your..." + (show)

@colleenyoung
Thanks for your help. We've managed to connect with MSK and Baylor for a start.

mk52dk51 | @mk52dk51 | Oct 9 5:47pm

In reply to @dillknox "Are you able to consider M D Anderson Cancer Center in Houston? Within 4 days of..." + (show)

@dillknox
We're starting with MSK in NY and Baylor in Texas. Our first "consult" was educational and scary at the same time. Thanks for the med-evac info. If it's Texas, we'd drive. We are hoping it can be done here in Denver.
Meg

ollusam | @ollusam | Oct 10 9:59am

My husband had his minimally invasive Ivor Lewis esophagectomy at MSK in NYC
Dr jones was his surgeon surgery was preceded with 4 rounds of FLOT chemo and followed with the same chemo. He had stage 1B adenocarcinoma of the GE juncture. He is 76 yo. And doing well. Lost quite a bit of weight but all in all good recovery. Hope this helps

mk52dk51 | @mk52dk51 | Oct 10 10:37am

In reply to @ollusam "My husband had his minimally invasive Ivor Lewis esophagectomy at MSK in NYC Dr jones was..." + (show)

@ollusam
I'm happy for you both. Good luck with the recovery.
Mine had a colon interdispostion which came along with lots of hospital recovery. Now he needs a revision surgery. We got some good advice from Dr Molena at MSK but it still involves a complicated procedure.
Hopefully.....

ollusam | @ollusam | Oct 10 11:20am

Prayers your way. I know how difficult it can be. Recovery wasn’t easy. J tube. Anastomosis leak with a pigtail chest drainage but all in all he’s doing well now. Good luck with your search for the appropriate treatment

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