Squamous cell EC recurrence: Got questions about chemoradiation

The "dry run" for radiation is Monday, then chemo will start Tuesday after radiation is given early morning. The first session of chemo will last 5-6 hours, and then will be for 3 hours each time thereafter.

Thanks so much for the links. I'm going to check them out.

I hope I'm posting this correctly now! 😂

After my recurrence of EC three years ago I had 25 radiation (proton) treatments and half a dozen chemo, including the pump, over a month at Mayo. After that I had two years of immunotherapy (Keytruda) before being cut off by insurance. It was most difficult about two weeks into radiation and two-three weeks after -- liquid and soft-foods, fatigue, nausea -- but not as bad as after my surgery five years earlier. Of course everyone responds differently to all treatments, but my experience has been positive.

Thanks so much for your reply @jlmcclure. Your treatment plan sounds similar to what's on tap for my husband (other than the proton radiation, he'll be receiving IMRT). I'm sorry to hear you had a recurrence necessitating more treatment but relieved to hear it was successful for you! I hope you are doing well and never have to go through that again. It sounds like you have a really positive attitude and I appreciate you sharing your experience.

How long were you stable after your surgery, before the recurrence? What had your regimen been before your surgery? Were mouth/throat sores ever a problem for you? That was hands down the worst problem for my husband the first time and I'm really hoping it won't be the case this time. He's in such better shape physically now than he had been the first time. He is actually asymptomatic at this point other than some fatigue over the past 6 months or so. Jeff had been in remission since mid-2020, nearly 4 years, which I believe is a good prognostic factor for success this time. He never had surgery the first time and isn't a candidate now but the chemo alone, albeit protracted, did get him NED for all that time. We are very hopeful that with the addition of radiation this time he'll be able to reach NED again. This is the goal according to our doctors. I know no matter what he may face as far as symptoms related to this treatment go, he's ready for anything to beat this again.

The doctors tell you what side effects *may* happen but like you said everyone responds differently and I hope his course will be as smooth as possible.

I think this forum is a wonderful resource and I thank you again for sharing. I wish you continued success and good health!
Lynn

My recurrence was diagnosed almost exactly five years after surgery, when I was just beginning to think that I had survived. Prior to surgery I had the typical chemo-radiation treatment. Post-surgery went relatively well: no mouth sores, only on a feeding tube for about two weeks after getting home from surgery, and eating solid food about a month or two after surgery. Five months after surgery I spent two weeks in the Netherlands, some restrictions on food (type and amount) and having to sit every 15-20 minutes in art museums because of a sore back. The main post-surgery problem was occasionally dumping syndrome to varying degrees.

I imagine it was disappointing to say the least to have a recurrence at what seemed like a safe time out from surgery...it was nearly 6 years (a month short) of the initial diagnosis when we found out it was back. It was only found at the time of a routine endoscopy this time, he had no symptoms. The GI doctor even commented that if this one was clear, which he thought it would be, he'd consider Jeff "out of the woods." Disheartening to say the least. How are you doing now?

Hi chip30 First time here. I was just diagnosed with a suspected Stage 1 squamous cell EC - I say suspected because they can't do a satisfactory biopsy below surface level (which showed dysplasia/carcinoma in situ) due to a stricture, so they suspect it's cancer. Currently trying to decide on treatment and the docs are conflicted- some say chemo/radiation some say surgery to remove the esophagus. I'm also in Rochester, NY and wonder whether you stuck with the team at Strong or if you sought a second opinion elsewhere, like Mayo? I'm terrified and this has hit us right out of left field so trying desperately to educate myself.......thanks for allowing me to pick your brain.

Jeff has completed 2 chemo treatments and 8 rad treatments so far. Over the past several days, he has been having hiccups nearly constantly for hours at a time including while sleeping. They're making it difficult for him to drink or eat. This was one of the weird symptoms he had about 5 months before he was originally diagnosed in 2018. It eventually progressed to the point of not being able to swallow even saliva. This also coincided with excessive mucous production having to spit constantly into a cup. This is when the feeding tube was placed. They continued after chemo treatments for a few days each time throughout his treatment and at some point finally subsided.

He has radiation this morning and will be talking to the dr. He's not sure he's going to even be able to lay still enough to have the treatment...I'm wondering what other people have experienced and possible treatments for them. I read through old posts and found some helpful tips which he'll ask the dr about today. I'm wondering if they're related to the chemo, radiation or the combo. He's lost 4 pounds since Monday. I'm worried he's going to end up with the feeding tube again...

Stage 1, and remove the esophagus? I hope not.
True, you need to eradicate the EC somehow, but I would hope there's a less invasive way to accomplish that. If you do end up having the surgery, you do need to go to a hospital (such as Mayo) that does that surgery several times a week and is well-prepared for your needs during and after surgery. My wife had her esophagectomy at Mayo/Rochester.

I know- it seems really drastic to me, too, so I was totally unprepared for the conversation (especially since all scans were "clean" with the exception of the site on the esophagus) . I appreciate your input; I've been doing research while waiting for the oncology appointment and it's clear to me that 1). if I have to do it, this is a complicated surgery and 2). the best results are obtained in high volume centers. I've been trying to find out where the "high volume" centers are to see if my own local center, Wilmot Cancer Center at Strong in Rochester, NY is one but can't find numbers. What does come up again and again is that Mayo is considered #1 for that surgery. I have a screening call with them on Monday so hope to find out more. I'm feeling pretty overwhelmed. I hope your wife is doing well - and you, too; my own husband is going through treatments for Chronic Leukemia so I know it's not just the patient who is thrown into a tailspin. How long were you and your wife at Mayo for her surgery?

When we were at the start of this, two years ago, we came across a video interview with Dr. Shana Blackmon, who was then at Mayo. My wife was sold on her from then on. We first went to Mayo for several days for a series of tests and consultations. Later, we traveled up for her surgery, spending 2 weeks there, a little longer than expected. They have a dedicated nursing staff (I'm pretty sure) for esophagectomy recovery patients, and they're very good.

I think you could call Wilmot and ask how many minimally-invasive esophagectomies they do per year and receive an answer.

Two suggestions: you might see if you can get tested and approved for immunotherapy now or soon, rather than later; also, check out smartpatients.com for additional access to conversation with EC survivors.

Wish you well!