Has anyone decided not to have surgery after the first round of chemo?

Hi, Scott here I started my journey last year August 2024 also had a j tube put in but I used mine because I couldn’t swallow any food and very little liquids. I had lost 45 lbs so needed the nutrition. It helped tremendously so I started my chemo October 7th flot program 4 treatments. So my tumor lower esophagus next to the stomach it did shrink 30% but not enough to eat. Scheduled surgery for January 3rd. For me it was the right thing to do. I wasn’t going to let cancer beat me. I was so positive about the way I felt and my oncologist and my surgeons were great also all the nurses. Not to mention my wife and family great support system!! So had my surgery 9 hrs surgery went well. One day in icu 7 days regular room first day a little rough got me up and walking around though. Started breathing exercises to get my lungs cleared out. Had a chest tube out my right side had to deflate lung to operate on my esophagus. So had my chest tube for 7 days then had my swallow test. That was my ha ra moment I could swallow again. So started me liquid diet first for a couple days then soups ice cream applesauce foods like that. Did that for about 10 days. Then started to eat more solid foods. Even though we have the same cancer we still are different everyone has their own issues. I was healthy till the cancer. If you have underlying conditions it can affect you differently. This was my experience. Then I had my 2nd round of chemo that was different I had more nausea this time. But made it through then waited 2 months had my pet scan and was clear. It’s been 10 months post surgery I walk and exercise to get my muscle and stamina back. Actually walking is going to be a part of treatments. I believe in it for sure. I hope this helps and what ever you decide wishing you the best!!

@goldenshadow thank you so much for sharing your experience. It helps reduce the uncertainty of what can happen.
Judy

Yes! My dad had 5 rounds of chemo and 28 radiation treatments. Scans came out clear and he decided not to do surgrey. They did an endoscopic and took biopsies and still no cancer. He is only 4 months out. Dr's say cancer will return in 6 months if he doesnt have the surgrey but he is taking is chances and trying alternative medicine

I was diagnosed initially stage 3 and later stage 4. I decided to do chemo/radiation first and then had Ivor Lewis surgery afterwards. I then followed up with 7 months of Opdivo immunotherapy. It was cut short by 5 months due to liver damage. I elected surgery because of a few factors. 1) Except for cancer, I was in excellent shape. 2) Relatively high recurrence rate of EC. 3) Psychological perspective that I was doing everything possible to fight EC and 4) I'm relatively young at 66. The surgery and recovery were tough with two trips back to the hospital and various complications. I'm a year out from surgery now and feeling pretty good. I lost about 18lbs, but I do strength and cardio training 5 days/12 hours a week. Everyone is unique though and it's a very personal decision. I wish you and your husband the best.

In deciding on surgery, it's a good idea to look at the SANO study out of Holland. In my case, declining surgery had a lot to do with age (86)...

I just had my 12th treatment I am stage 4 esophagus I do Fullfox every two weeks and Keytruda every three weeks, I went from loosing a half pound a day to gaining back weight and eating fairly normal. Originally I was told with all the lymph none issues in my stomach that I wasn't a surgical candidate but I have done excellent with my treatment and now the surgical team is discussing my options, though I am not sure I want the surgery as that my survival rate may be the same without surgery, Right now my quality of life is not bad but the surgery scares me as that no one has stated expected life expectancy if I have the surgery,

@earle My husband also declined the surgery at age 81.
For those interested, here is a link to the SANO trial
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(25)00027-0/abstract
Another article of interest for decision making on surgery
https://pubmed.ncbi.nlm.nih.gov/34191461/
It is upon us individually to choose wisely based on our our life stage and disease status.

@cromme50

Thanks. I've mentioned it before, but my former wife, who remained a friend, died of EC. She had the surgery, although younger (late 70s) than I now. The side effects of the surgery vary greatly among individuals, but after observing her and digesting the SANO trial among others, it just didn't pay off for someone my age. Dealing with the scarring and strictures from the radiation have been enough. I still have 2-3 more dilations to go...

First things first... why must a decision be made about esophagectomy after only one round of a first-line treatment?

If we are talking about possibly being cured of our esophageal cancer (and not just buying a little more time)... it's important to do things in order... and see what develops... what options become possible. These are unknown at this early stage, even to our oncologists, GI doctors, and thoracic surgeons. First-line chemo or chemoradiation treatments need to be completed... and then see what next scans show... and see what the tumor board recommends. Patients are still in charge, no one can force you to do anything. Let's wait and see what develops... then go from there.

We host twice-weekly free Zoom calls if you'd like to pop in. We're just patients and caregivers talking to each other... and we've seen most everything.

Be well,
Gary

You're right. One step at a time. Just wanted to have a sense of "being in control" I guess.

thanks Gary.