1. < Esophageal Cancer
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Mom 57 Diagnosed with Stage 3 Adenocarcinoma - Looking for experiences

Posted by ur91 @ur91, Jul 16 9:31am

Hi, Mom, 57 was diagnosed with Stage 3(T3 N0 M0, HER2+) in GE junction, back in April.

Treatment completed 7/10:
- FLOT (Oxaliplatin and 5FU) 3 Treatment sessions
- Radiation: Mon-Friday - about 28 sessions

Current:
Waiting for about 4 weeks before a PET scan to determine whether she will be a candidate for surgery.

We're about a week post final radiation and her symptoms seems to be getting worse.
- Vomiting more frequently, at least once a day sometime more.
- Feeling like foods/liquids are going down harder. Feeling its getting stuck. (She never really had any blockages and has been able to eat and drink mostly normally before and during treatment.)

Future:
- She is nervous about the surgery but we were told the statistics and it seems like the team would recommend surgery.
- They might consider immunotherapy post surgery

I suppose I'm sharing this because I would like to hear if what she is experiencing in line with what others have during their journey. Do symptoms get worst post treatment, and for how long?

If you have been through this or were in a similar situation, what was your experience? Did you get surgery? Did you get "cured"?
Given her diagnosis, are the chances good to get to a cure post surgery? Do they go down she decides against it?
How risky is the surgery?

She's getting treatment at Johns Hopkins in Baltimore and they seem to be one of the best for esophageal cancers as we understand it.
They dont offer robotic surgery but their overall surgical success numbers seem to be quiet high.

Thanks for any suggestions or stories that you share.

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 1 7:01pm
In reply to @ddandh "@goldenshadow Hi Goldenshadow. I’m about to experience the exact same treatment starting next week. I’m nervous..." + (show)
Profile picture for ddandh @ddandh

@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.

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@ddandh, you're asking good questions. In addition to the tips you've received already, you may also wish to check out these related discussions:

Living life after treatment and surgery for Esophageal Cancer. https://connect.mayoclinic.org/discussion/living-life-after-treatment-and-surgery-for-esophageal-cancer/
- 2 years post surgery: Any tips for sleeping and eating? https://connect.mayoclinic.org/discussion/2-years-post-surgery/

@ddandh, how is treatment going? How are you doing?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 2 3:25pm
In reply to @billnclaire47 "Hello. My husband, 74, was diagnosed on Sept. 3, 2025 with junctional esophageal cancer. He can't..." + (show)
Profile picture for billnclaire47 @billnclaire47

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.

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@billnclaire47, I hope you saw the helpful replies from fellow members regarding your question about when treatment starts after meeting with the radiation therapist.

How did the appointment with the radiation therapist go? When does your husband start treatment? Any questions to help you feel prepared?

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billnclaire47 | @billnclaire47 | Nov 2 9:46pm
In reply to @geoff123 "Hello Claire and Bill, Your experience with delayed commencement of treatment is very similar to mine...." + (show)
Profile picture for geoff123 @geoff123

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

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@geoff123
Thank you. Bill is still untreated. Still being tested. We hope in God. And we appreciate your encouraging remarks about the treatment services. Thanks again.

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rdt | @rdt | Nov 5 3:38pm
In reply to @dsh33782 "Ur91 Hi I had chemo and radiation for esophageal cancer tumor in lower esophagus. I did..." + (show)
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Ur91
Hi I had chemo and radiation for esophageal cancer tumor in lower esophagus. I did not have surgery. After several radiation and chemo treatments, the tumor had shrunk 30%. I ended up with feeding tube for a while since I could not swallow. I also had several side affects including coughing, tired, and diarea. But after treatment, the tumor was gone and I got better. I'd be happy to answer any questions.
Don

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@dsh33782 Hi Don, I'm reaching out to ask about your treatment plan. Were you not a candidate for surgery or did you decide not to have the surgery? I've been just recently diagnosed with this cancer lower esophagus, and my oncologist tells me that even if I receive the treatments (chemo, immuno, and radiation) and my tumor is eliminated that I still have to have the surgery. I'm concerned about the surgery and long term effects after. I have read that many have had complications after the surgery. Any information is helpful. I'm scheduling a second opinion for next week. Thanks Todd

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Mentor
Don Higgins, Volunteer Mentor | @dsh33782 | Nov 5 4:31pm
In reply to @rdt "@dsh33782 Hi Don, I'm reaching out to ask about your treatment plan. Were you not a..." + (show)
Profile picture for rdt @rdt

@dsh33782 Hi Don, I'm reaching out to ask about your treatment plan. Were you not a candidate for surgery or did you decide not to have the surgery? I've been just recently diagnosed with this cancer lower esophagus, and my oncologist tells me that even if I receive the treatments (chemo, immuno, and radiation) and my tumor is eliminated that I still have to have the surgery. I'm concerned about the surgery and long term effects after. I have read that many have had complications after the surgery. Any information is helpful. I'm scheduling a second opinion for next week. Thanks Todd

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@rdt
The surgeon I saw at Moffitt Cancer Center in Tampa did not recommend surgery and instead recommended chemo and radiation. I'm guessing that the tumor was discovered before it did significant damage to the esophagus lining. I have since had several endoscopy and oblation treatments after the chemo and radiation to remove remaining barrets esophagus pre cancer cells. The good news is that no esophagus cancer shows up on MRI or other scans. Let me know how you are doing and what the next steps planned are for you.

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chlo145 | @chlo145 | Nov 30 3:45pm
In reply to @dsh33782 "Ur91 Hi I had chemo and radiation for esophageal cancer tumor in lower esophagus. I did..." + (show)
Profile picture for Don Higgins, Volunteer Mentor @dsh33782

Ur91
Hi I had chemo and radiation for esophageal cancer tumor in lower esophagus. I did not have surgery. After several radiation and chemo treatments, the tumor had shrunk 30%. I ended up with feeding tube for a while since I could not swallow. I also had several side affects including coughing, tired, and diarea. But after treatment, the tumor was gone and I got better. I'd be happy to answer any questions.
Don

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@dsh33782 hi Don,
Would you mind sharing what stage you were? My dad just got diagnosed and we are completely heartbroken. I hope you’re well.

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chlo145 | @chlo145 | Nov 30 3:48pm
In reply to @geoff123 "Hello, I’m writing from Tasmania, having just joined this site. I was diagnosed with oesophageal (English..." + (show)
Profile picture for geoff123 @geoff123

Hello, I’m writing from Tasmania, having just joined this site. I was diagnosed with oesophageal (English spelling) cancer Feb 2024 - a worrying time. The treating team started chemo / radiotherapy (5 and 25 sessions respectively) within 3 weeks of diagnosis. We were warned about lots of potential side effects, particularly with radiotherapy where S/E’s are cumulative. I did very fell till around session 21 when severe fatigue set in. By the last session it was literally almost impossible to get off the couch. Some people report feeling like they’ve swallowed razor blades but swallowing was not a problem for me - we all react differently. The fatigue improved over the next month.
I had surgery several weeks later. I was warned it was a very invasive procedure and that is certainly the case. Being 68 yoa means it hits harder and requires more recovery time than when you’re younger. The whole time was not much fun, but nothing that was not tolerable. The stats I was given suggest that having the surgery yields a four fold increase for survival at the 5 year mark. I’m currently 14 months post surgery and feeling life is pretty much back to normal, albeit a new normal.
My best wishes to all dealing with this illness. Be aware that with a bit of luck, good results are possible. Being fit and physically active certainly assist recovery and the significant psychological challenges you face. Best wishes. Geoff

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@geoff123
Hi Geoff,
What stage were you diagnosed with? I’m glad you are doing well!

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geoff123 | @geoff123 | Nov 30 6:13pm

Hi Geoff, My cancer had progressed to a single neighbouring lymph node, so technically stage 3. Thanks for your good wishes and I hope all is well at your end too. Ps. I’ve just had a clear PET scan 18 months post surgery - feeling very relieved.

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douglasgb | @douglasgb | 22 hours ago

I'm 59 and was diagnosed September 2025 with stage 3 adenocarcinoma. Have had 4 rounds of FLOT, no immunotherapy prescribed nor radiation. I needed a stent implanted to facilitate swallowing and gained over 30 pounds (yes, I was very skinny & malnourished). Am switching surgical teams from Advent to Mayo. Mayo will do their own scans & labs before scheduling surgery, but more chemo is in the works before surgery. Stent has been removed and not having any issues with swallowing nor vomiting. Not looking forward to more chemo, but at least the post-surgery chemo sessions won't be as much...hopefully!

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deb005 | @deb005 | 7 hours ago

Hello, sorry to hear your mum has been diagnosed with this.
When we first heard my husbands diagnosis, the shock and worry is enormous but once treatment has begun, you do learn to cope a little better. My husband had weeks of FLOT chemo ( which did make him very tired) but he coped reasonably well with the other side effects. He was diagnosed at 70 yrs old. Went on to have the Ivor Lewis surgery. It is life changing, but you do learn to deal with these things. After his first sessions of chemo, he found he could eat again and no vomiting. After the operation, he can only manage small meals, 6 a day, and it is a different way of eating but yr mum will get used to doing things differently. Reflux has been a real problem for him but not everyone is affected by it. He lost around 40-50 lbs and was thin to start with but now has a Jtube, a feeding tube that goes thru his abdomen into his small intestine. It all sounds so frightening, but he has learned to manage it well and has gained 18 lbs since using it. You just take it day by day, keep a positive attitude, walk when you feel well enough. I have read stories of people diagnosed with stage 4 esophageal cancer years and years later telling their stories. Wishing your mum all the best. Although the surgery was tough on him, he would still choose to have it again.
He had the surgery in November 2024 and things are slowly improving.
Deb

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