Diagnosed with esophageal cancer Most scared of the Feeding Tube

Posted by ddunavin @ddunavin, Dec 9, 2022

Going to Duke Medical in a few days to:
1. PET scan results to determine if it's metastasized.
2. Determine Stage and Treatment Plan
3. Feed Tube Install in Abdomen? (this scares me more than the cancer)

Any words of advice?
What are chances this large mass has spread to other places, is it common?
My #1 goal right now is to stay positive for my wife.
Thank you,
David

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

I’d like to suggest to not stress if the cancer reoccurs. I had stage III esophageal cancer with 5 wks. Chemo & radiation followed by complete esophagectomy with gastric pullup in 2019. Some little microscopic cancer cells were found in the path report following surgery and a year later confirmed cancer was still there. So then switched to Proton therapy in 2020.
It’s now 2 1/2 years later with clean scans. I’ve been told that my next option, if needed, would probably be immunotherapy.
So new treatments become available and just focus on staying strong and don’t dwell on ‘what if’. Stress is not a healing mechanism.

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@lori57216

The PET scan will indeed narrow the location of the tumor down with the dye. If there is cancer anywhere outside of the esophagus it will show up in red. I had many tests conducted just to be certain that the tumor was contained inside the esophagus walls(not the vocal cords etc.).
They put my feeding tube (I had a J tube in the lower abdomen) while I was in surgery having my esophagus removed, not before. It was a challenge getting the proper nutrients while going thru the treatments (radiation daily & chemo 1x / week). I drank alot of healthy soups. Get a blender or a food processor to make swallowing less difficult & painful for the big chunks!!!! Get plenty of Ensure or any other kind of high protein nutritional drink!!! Doctor them up with ice cream, choc, fruit (jams & jelly's work real good!!!) malt powder, peanut butter etc. to enhance the flavor!!! Don't be afraid to be creative as long as it tastes good to your Bride!!!! The important thing is.......... make sure she gets plenty of PROTEIN & vitamins, calories. Chemo deminishes the hemogloben (red blood cells). The feeding tube was a pain in the arse to be sure but....... not a big deal really. It takes some getting used to. YOU'VE GOT THIS!!!!

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I had Stage 4 esophageal cancer w/chemo, radiation & a 10 hr. surgery. 1/3 of the esophagus was lost to cancer so had to detach my stomach & move it up near my chest to sew it into the remains of the esophagus. Was on J Tube feeding tube for 6 months & struggled with instant onset diarrhea for well over a year since my diet was soft food + liquid tube feeding. The diarrhea issue was horrible. Problem was I wasn't getting any fiber or solids for my intestines to work on. When I returned home I tried thoroughly chewing cashews & other soft nuts & the diarrhea ceased all together. Other issue w/feeding tube is it damaged the vein where the connection is. Can't use it for drawing blood. Used to be a really good vein.

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@survivorsuz

I’d like to suggest to not stress if the cancer reoccurs. I had stage III esophageal cancer with 5 wks. Chemo & radiation followed by complete esophagectomy with gastric pullup in 2019. Some little microscopic cancer cells were found in the path report following surgery and a year later confirmed cancer was still there. So then switched to Proton therapy in 2020.
It’s now 2 1/2 years later with clean scans. I’ve been told that my next option, if needed, would probably be immunotherapy.
So new treatments become available and just focus on staying strong and don’t dwell on ‘what if’. Stress is not a healing mechanism.

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Hello
My mom is on immuno - the scan are cleared but because she was stage 3 (1 little lymph node was +).
Why did they suggest proton therapy (and what is it ) instead of immuno ?

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@ddunavin

Hot spots on the Pet Scan. I'm actually in the waiting room at Duke right now for a biopsy on the node in my neck. (I think)

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How are you ?

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@naomicanada

Hello
My mom is on immuno - the scan are cleared but because she was stage 3 (1 little lymph node was +).
Why did they suggest proton therapy (and what is it ) instead of immuno ?

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I’d suggest you get the reasoning of the treatment option directly from the oncologist. So many factors they have to take into consideration and I’ve found they generally are very willing to take questions from the patient and family.
You don’t have to wait for the next appointment. You might consider asking your question through the patient portal.

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@bea4me

I had Stage 4 esophageal cancer w/chemo, radiation & a 10 hr. surgery. 1/3 of the esophagus was lost to cancer so had to detach my stomach & move it up near my chest to sew it into the remains of the esophagus. Was on J Tube feeding tube for 6 months & struggled with instant onset diarrhea for well over a year since my diet was soft food + liquid tube feeding. The diarrhea issue was horrible. Problem was I wasn't getting any fiber or solids for my intestines to work on. When I returned home I tried thoroughly chewing cashews & other soft nuts & the diarrhea ceased all together. Other issue w/feeding tube is it damaged the vein where the connection is. Can't use it for drawing blood. Used to be a really good vein.

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How was the surgery? My husband will be facing it after chemo and radiation. I've read about it and it terrifies me. Where did you have the surgery?

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Hello I am new to the group and my partner was diagnosed on December 23,2022 with esophageal cancer. It has been a nightmare trying to get referrals after he was diagnosed. It was not until January 9 that we finally got to see a surgeon and thank goodness he started the ball rolling. I have no idea what to expect and would absolutely appreciate any comments to help us get thru this.

Thank you and God Bless

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@jp2023

Hello I am new to the group and my partner was diagnosed on December 23,2022 with esophageal cancer. It has been a nightmare trying to get referrals after he was diagnosed. It was not until January 9 that we finally got to see a surgeon and thank goodness he started the ball rolling. I have no idea what to expect and would absolutely appreciate any comments to help us get thru this.

Thank you and God Bless

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So sorry to hear about your partners diagnosis. Is he seeing an oncologist or a surgeon? Typically an oncologist will start with chemo/radiation as initial treatment.
My husband was diagnosed in January 2022 and did 30 rounds of radiation and 6 chemo treatments. His tumor (at the junction of his stomach/esophagus) reduced as a result of the treatment. In July 2022 he had an esophagectomy removing portions of esophagus/stomach.
After/during chemo/radiation he really struggled with getting/holding anything down. He ended up getting a feeding tube. This has been a lifesaver. He still has it and while he can eat a little, it’s not enough to sustain him.
Due to scar tissue, he periodically needs to get his esophagus “stretched”. When he needs to get this done, he struggles with nausea, vomiting and general malaise. He’s in the throes of this right now. Just waiting for the procedure to get approved/scheduled.
Hang in there, keep him hydrated and keep the calories up! Good luck, there’s lots of folks here to provide input, feedback and suggestions.

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Hello,
I had an EGD on Wednesday. The doctor found a tumor at the bottom of my esophagus and the top of my stomach. It was confirmed, the tumor is cancer. I am scheduled for a CT scan on Wednesday 1/18. I have to schedule an appointment with an oncologist after the CT appointment. Is there anyone out there that has had a similar experience and can share what to expect? I am at a loss for words and I don't know what to expect.

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@jp2023

Hello I am new to the group and my partner was diagnosed on December 23,2022 with esophageal cancer. It has been a nightmare trying to get referrals after he was diagnosed. It was not until January 9 that we finally got to see a surgeon and thank goodness he started the ball rolling. I have no idea what to expect and would absolutely appreciate any comments to help us get thru this.

Thank you and God Bless

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Welcome @jp2023 and @lalaluv, you've come to the right place to get support from others who are living with esophageal cancer or caring for someone with esophageal cancer. To help you connect with others, I moved your messages to this existing discussion:

- Diagnosed with esophageal cancer Most scared of the Feeding Tube https://connect.mayoclinic.org/discussion/diagnosed-on-thanksgiving/

I did this so you can read previous helpful posts and connect with members like @ddunavin @dsh33782 @johnstawicki @kissingrhino @sjw6358 @doglover888 @survivorsuz @puprluvr @karly @davevb @margaretdv @atafitness @lori57216 @naomicanada @socalkelly and many others.

JP, I'm glad you finally got a referral to a surgeon. Have you started a list of questions to ask?

@lalaluv, I assume the CT scan is part of the diagnostic process for you to stage the cancer. Have you been referred to a surgeon>

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