Frequent diarrhea after treatment for stage 2 esophageal cancer

Interesting... stage 2... but zero neoadjuvant treatments... straight to surgery. And then he did some adjuvant treatments. Ok... how many? Kind of the CROSS protocol in reverse... Carboplatin and Taxol... how many radiation treatments?
What were his post-op pathology results... not only what was seen in removed lymph nodes and margins of the chunk of esophagus removed, but also, what depth of penetration was seen in that chunk? What was his final pTxNxMx designation?

Ok... what your asking here about much softer poops... even diarrhea... yes... totally normal for most all of us esophagectomy patients. And remember... 2 months post-op is just barely getting started on digestion once again. This is going to be a year or two... so buckle up and enjoy the ride... it can be a bit depressing. And most of us have some nasty tummy aches, intestinal pains and ass explosions for many many months. All normal. Don't be in a rush to change diets... desperately looking for something that works! I continued to see huge improvements in my second year post-op... for instance I sleep totally normally again... flat, head on a pillow or two, on either side as well. This may or may not come for him. Time will tell.

Nope... my philosophy was... NOTHING is working the first 6 months. So... i just stayed the course. I knew I wanted to eat as I always did (except maybe volume will be less )... so I just kept shoveling it in... forcing my body to figure things out... because I was NOT going to change. It took a year to 18 months... but little by little, pains slowly subsided... poops firmed up... sleep got better, etc. It's just a pain in the ass... literally!

Now... can there be other things going on... that might need to be addressed medically? Sure... like maybe an anastomosis stretch or five (if swallowing is not there)... and maybe some pylorus treatments if motility problems are seen... and maybe some digestive aids needed (like Creon), if digestive enzymes need a boost.

But stay the course.

Gary

I've had diarrhea issues since 2018 due to pelvic radiation and was taking up to 6 lomotils a day to barely be able to make it to the toilet in time. This year I found Citrucel, which bulks up the stool. I take 3 after breakfast and 3 after lunch. It has made a huge difference, now I take maybe 2 lomotils a week. You need to experiment with dosage, start low and keep increasing until you find how many you need a day. Walmart has a generic version of Citrucel called Fiber Therapy. The one and only ingredient in both is Methylcellulose and the Walmart version is significantly cheaper. I no longer have to wear disposable pants and that is a big morale booster!

Thank you, Gary. I think it will help John to know others have gone through this, and that there is a light at the end of the tunnel. As for the order of his treatments. He had two endoscopies that came back negative for cancer. His gastroenterologist felt sure the tumor she saw was malignant. She consulted with other doctors who agreed with her observation, that what she saw was a malignant tumor, that was growing. They couldn't get a PET scan approved without a positive biopsy... John has Waldenstrom's syndrome which has been treated and he is free of symptoms, but he still has a cancer diagnosis. His Waldenstrom's oncologist, who had been kept in the by his esophageal cancer doctors, said "ah ha I can help... I have a cancer diagnosis for Waldenstrom's and I can get approval for a PET scan. Sure enough, the PET scan showed esophageal cancer, but by then the tumor had grown and John could barely swallow. It was likely to grow enough to reach the other side of the esophagus very soon. The surgeon we were seeing explained that... in this case,he and John's other doctors agreed that he ought to have the surgery first. If the got all the way to the wall it would be "bad". Whew! So things were done differently from the norm. He finished everything a couple months ago, had his follow up PET scan a week or so ago. He saw his oncologist Tuesday and got a "great report" ...no evidence of metastatic disease. We have an appointment with the radiation oncologist today. We will, hopefully, be through except for quarterly follow up CT scans. (Long story, huh?!) Thanks for"listening", Donna (and John)

I thought something seemed fishy about his order of things. I still have some thoughts... I'll come privately.

Thanks again, Gary...I got a few more answers when we saw the radiation oncologist today.
John's cancer was between stages 2 and 3. His lymph nodes were at 0, no cancer found. The tumor was squamous cell. Margins were positive...he explained that this meant the tumor came to the outer edge of esophagus (all the way through). He had 25 proton radiation treatments and 5 chemotherapy treatments.

Ok... at this point I think I'll drop this one. Things still don't add up for me. Because of all the things we have done as patients to determine if we have EC, and what stage we're at... the biopsy is what matters most. There's no mistaking EC when it is seen by a pathologist under a microscope. PET scans are a piece of the puzzle, along with EUS, but are not always a definitive piece. So I'm wondering how two endoscopies could be done (EGDs or EUSs?)... and biopsies saw no cancer? Did they biopsy the wrong locations? I find that strange since the GI doctor was sure it looked malignant and was EC. Just puzzling to me... along with a few other things. But I'm happy things are moving along and hopefully NED status remains attainable.

I gathered, from what the doctors said, that Medicare was the problem. They wouldn’t pay for the surgery without aPET scan and wouldn’t pay for aPET scan without a positive biopsy, no matter how sure the doctors were of what they were seeing . Did you mention the possibility of a private chat about this. I feel like I’m not explaining it well and to be perfectly honest, I’m not sure I ever really understood it well.

By the way, our hospital was Emory.

My Stage 4 esophageal surgery was done in July 2020 & I had to deal with severe diarrhea for a very long time afterwards. I called it "instant on-set diarrhea" as there was never enough warning to get to the bathroom. Nothing helped with the problem - doctor prescribed various things but they were useless. After I was able to return home, I realized that after spending 6 mo. in the hospital and 4 re-habs on liquid diets thru feeding tubes, I wasn't getting any fiber in my diet. Even tho swallowing was tricky, I decided to carefully and thoroughly chew a few roasted almonds each day. It wasn't long before my diarrhea issues slowed down and eventually stopped. This type of diarrhea sure changes one's life style. You're afraid to leave the house & that's no way to live.