Help with post surgery symptoms baffling docs.

Come talk to me privately here. Yes... what he is seeing is quite normal... especially since he's had a colon interposition and not a standard esophagectomy.

Gary

Ok. Would be interested in your story. Thx and enjoy the cruise

Here's a summary I sent to a fellow caregiver who was asking questions about her father... so I could better understand the counseling he could use. So I briefly told her my story:

Give me some background on his journey to date... I'm sorta like a doctor now... I need the basics to know if what he's seeing is normal. For instance... here's my Reader's Digest summary:

Male, 61 at dx in March 2020
Stage 3 dx, T3N1M0. Adenocarcinoma tumor at GEJ
J tube installed ASAP, could not swallow a teaspoon of water
CROSS protocol of five weekly Carboplatin and Taxol chemo infusions started 4 weeks later, with 23 photon radiation treatments.
Off J tube for last 6 weeks leading g to esophagectomy, as swallowing improved.
Minimally invasive Ivor Lewis Esophagectomy on 7/29/2020.
One year of Opdivo started in October 2020. Completed Sept 2021.
Monitored by 6 month scans for first 3 years post-op, along with Signatera Blood draws for ctDNA.
Just had my last CT scan with contrast on August 1st. Oncologist said he's done following me.
Only post-op issue... tight anastomosis... could not swallow well, even at 5 months post-op... still dropping weight. Turns out I needed to be stretched. 4 stretches at one per month took me from 5 mm to 16 mm.
Today I eat fairly normally... I sleep flat again, head on one pillow, on either side.
But everybody's post-op journey is different... YMMV as they say. But it is especially depressing early on. That's what I'm here for, so you call me and we'll discuss.

Ok... let me have it about dad.

I’m sorry he’s having so much trouble, I’m 78yrs and after reading all the horror stories I’m
thinking of no surgery. Maybe continue more Chemotherapy +
Radiation with hopes the tumor
gets small enough to get ESD surgery.
Good luck on your journey and hopefully things get better.

My husband also experienced this last year post-surgery. It did subside but I can't remember how long it took. He had other symptoms that we were managing at the same time. Wishing you all the healing possible!

Since he had cancer in the esophagus and there was no test to see if it had penetrated the wall, it was suggested surgery would be the only potential procedure for long term survival. Plus there was another much smaller tumor towards the throat. The tumors reacted very well to 4 weeks of chemo, then 28 days of chemo/radiation. Basically they could not be seen. He was 73 when he was diagnosed and in very good shape so we opted for surgery. No one knows for sure so you need to follow your heart and head in your decision. I wish you well with the radiation.

Do you remember if the spitting up was preceded by lots of coughing? I know there are articles about these symptoms not related to cancer so it could be that.
It's only been 2 months out of hospital and he was doing so well - swallowing, eating small bits of soft foods. Then this setback which, as you know, is not just physical. It takes a lot mentally to endure.
Thanks for any other words of wisdom!

Thanks for that recap of your journey thru this. My guy was 73 and in very good health/condition. He worked out regularly, was retired, and kept very busy with gardening, traveling and photography.
It all started with throat clearing, often, for which he went thru a battery of ENT tests with no clearcut results or advice. Then he got a bad backache. During the MRI for that, they found a huge hiatal hernia - probably had been there for years without affecting anything physically. upon immediate surgery they found the tumor - actually 2 - proximal and distal along the esophagus. They repaired the hernia as best they could to protect as much of the stomach tissue as possible. He did really well for a day until 2 days post surgery, he had a gastric torsion. Back for emergency surgery for a better repair. Then 4 weeks of chemo, then a 28 day round of radiation/chemo. The tumors could no longer be seen. But, no guarantee since the tests don't show the outer wall of that organ. We found a terrific surgeon, the one in Denver that does more esophageal transections than anyone else.
The surgery went well - the thoracic surgeon on the team knew the stomach was not viable; she brought up the colon (that doesn't come with it's own blood supply), stitched it to a blood supply in the neck (sorry for my non medical explanation!) and they were both happy with the outcome. The juncture however took a long time to close so he wound up in the hospital for 2 1/2 months - enduring 3 changes of ESO sponges. They did put a J-tube in place during surgery.
Now, 2 months home, there is just a roller coaster of good and bad days. This last issue with the coughing and spitting up is probably the worst because the docs don't have a definitive answer. Finally, this week, the gastric surgeon suggested it had something to do with this coughing. I looked up coughing that results in vomiting and it's a thing - not related to his surgery but it is a known condition.
He was drinking fluid all the time, started to eat some soft foods - no problem. Now, no matter what he does - this coughing persists. And when it does, it almost always produces retching and spitting up - even if he's had nothing by mouth.
His weight is stable thanks to the J-tube. The doc mentioned something about the coughing putting pressure on the diaphragm that in turn brings up anything that's sitting there - saliva, bile, whatever.
Sorry, way to much info on a vacation. We just want something to grab on to - it's this, it's that.....this is what we'll do....this is how long it will last.....anything. We went in to this knowing it's a long haul. I am so happy for your continued good health. Wow, no wedge to sleep on!!! He'd love that. I really feel positive about this - just trying to convince him.
Regards and really sorry for the long winded reply. This platform for sharing is awesome!

These are comm I n post operative complications seen in patients who've undergone of colonic interposition vs Iver-Lewis esophagectomy. The colonic onterpositional surgery is more complicated in that in requires surgical resection from either left or bowel sections with their intact vascular supplt and then multiple suturing and anastomoses to the remaing esophageal root. As such, there is more potential for vascular & tissue leaks and increased periods of adjustment and adaptation of the transplanted segment to its new milue re re-innervation for contractility and re-establishment of its vascular supply. During this adapation period the colonic segment will undergo a period of reactive inflammatory changes that may result in epithelial cell stuffing, excessive mucus and intercellular content secretion into the lumen of the transplanted segment and this may trigger wrenching nausea, aspiration, loss of aptitude etc. These symptoms are usually transient and improve with time post-surgically, but every patients post surgical progress is unique. If your husband' problems persist he should be evaluated for the potential issues I identified above, he may require surgical salvage or revision. His symptoms may also be medically managed with various expectorant, anti-secretagogs and anti-emetic meds. PMA and moderate exercise are critical to his healing process. I wish you both the best in your journey with this terrible disease.

I do think there was coughing also. One more thing we didn't expect was during chemotherapy he had a non-stop runny nose until he was finished with the treatment. It takes so much mental energy - absolutely. I am keeping you both in my prayers.