Mom 57 Diagnosed with Stage 3 Adenocarcinoma - Looking for experiences

My husband was diagnosedlast February 2025. He has completed chemotherapy and radiation. I thank God everyday that’s he’s doing so well. We are on a break until Sept 4th. He will have his scans and provided they are positive, surgery (esophagetomy) Sept 12th.

I know God is with us on this journey. My prayers include you all on similar journey.

My husband was diagnosedlast February 2025. He has completed chemotherapy and radiation. I thank God everyday that’s he’s doing so well. We are on a break until Sept 4th. He will have his scans and provided they are positive, surgery (esophagetomy) Sept 12th.

We are going to MAYO Clinic in Minnesota.

I know God is with us on this journey. My prayers include you all on similar journey.

@goldenshadow Hi Goldenshadow. I’m about to experience the exact same treatment starting next week. I’m nervous about all of it. Even the simplest thing of how to adjust to a wedge pillow is stressful.
How was the pain and discomfort after surgery? How was eating after surgery? How much weight did you lose?
I’m concerned about losing too much weight for the first time ever! How was your eating after surgery and how is it now?
Any help would be greatly appreciated!
Thank you.

I was diagnosed stage 4 endenocarcinoma in May, 2024 at Mayo clinic. One thing I've learned is everyone's journey is different, but there are some common experiences. I was put on a Folfox 5 chemotherapy trial in August 24. Concurrently, I had 4 sessions of Photon based radiation before switching to Proton beam. Insurance wouldn't initially cover Proton beam. Unfortunately, I got pericarditis from the photon based radiation. At the time, they weren't sure if chemotherapy contributed so I only received 2 of 3 rounds. The treatments shrunk the tumor to only microcells so it was very successful. I had minimal side effects from chemo and radiation, except for the aforementioned pericarditis. Mayo strongly recommended a robotic assisted esophogectomy due to the high potential recurrence rate of this type of cancer. I had an 8 hour surgery on November 1st, 24. I spent 10 days in the hospital with a tough recovery. It seemed like forever, but now only a blink of the eye. I was on at home j tube feeding for 30 days post surgery. Fortunately, I had unbelievable support from my wife and caretaker. I did well getting back first to soft foods and then a fairly normal diet. The new normal is small meals, lots of chewing and eating more frequently. We also bought an adjustable bed so I could sleep on my back at a 35 degree angle. I ran into trouble 4 months post surgery with gastroperesis and spent 5 days in the hospital, while dropping 15 lbs in a week. I'm now almost one year post surgery and have tested NED on 3 scans. I still have trouble if I eat too much (dumping syndrome, vomiting), but not too much. As a precaution, Mayo put me on Opdivo immunotherapy in January, 25. I lasted 7 months before the treatment started to cause liver swelling and fibrosis. I've since stopped. I'm very fortunate for the excellent care and support I've received frome Mayo and SSM Healthcare (local care team). I do weight traing daily, golf and otherwise stay active. Sorry for the long message, but it's a long journey. I wish you well in your journey. Last piece of advice is try to stay positive as the path to recovery is not linear. You're going to run into unexpected challenges, but overall, you're going to beat this.

Husband, 68 , same diagnosis. Did FLOT as well. About the same time post radiation, he also started feeling worse etc. It subsided after a couple of weeks, doctor indicated it was like his esophageal was sunburn from all the treatments. Treatments are cumulative so that made sense. We kept in close contact with doctors and it subsided. He is 6 weeks post surgery (minimally invasive)and doing well!
Best of luck to You and your Mom, sending positivity and prayers !

Hello. My husband, 74, was diagnosed on Sept. 3, 2025 with junctional esophageal cancer. He can't swallow anything. He has a PEG tube and a chemo port. He sees the radiation therapist this week and starts treatment 2 to 4 weeks after that. My question is: Is this the usual length of time before starting treatment?
Thanks.

Hello Claire and Bill, Your experience with delayed commencement of treatment is very similar to mine. I was diagnosed with stage 3 esophageal cancer in Feb 2024. It was probably several weeks before I started chemo and radio therapy (followed by surgery a few months after that was completed). I read that once symptoms (dysphasia) become apparent, the cancer tends to progress rapidly; it was a very worrying time. However, I’ve come through pretty well with no signs of living cancer cells detected in the resected esophagus / stomach tissue or in post operative scans.
Maybe the take home message is that treatment services know what they’re doing and that you can safely put your trust in their decision making processes. If you are concerned by the delay, why not contact your oncologist and put your concerns to him or her - I’m sure they would not want you feeling unnecessarily anxious. All aspects of treatment, especially the surgery are pretty challenging as you may have gathered from this site but it’s nothing you can’t get through. Wishing you all the best in the months ahead. Geoff

@billnclaire47 My time line to treatment was much quicker in 2021. There may be other factors, perhaps significant weight loss that are involved. I'd ask specifically why so long. The patient and caregivers need to be fierce advocates and question everything to be sure you understand the what's, whys etc.

My husband started treatment within 1 week of diagnosis and scans etc.

@lionsfan
I have almost exact same journey, just older. Took me/is taking me a very long time to figure out the food/eating issues. Not so lucky on outcome, as the liver is got it too.