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Help with post surgery symptoms baffling docs.
Esophageal Cancer | Last Active: Sep 7 5:10pm | Replies (15)Comment receiving replies
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.
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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!