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

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Welcome @ddunavin,
I'm sure that this was not the news you were hoping for on Thanksgiving. I can understand your need for reassurance that the tumor hasn't spread. Tumors of any size can metastasize and some large tumors can stay contained in the esophagus. Naturally only the tests will be able to determine if it has spread. It sounds like your doctors are doing everything to assess the stage.

This is an uncertain time. Fellow survivors and caregivers like @dsh33782 @johnstawicki @kissingrhino @sjw6358 @doglover888 @survivorsuz @puprluvr @karly @davevb @margaretdv @atafitness @lori57216 @naomicanada know this first hand. Some have been in your shoes very recently. Others years ago.

Many patients worrying about the feeding tube. I get that. @socalkelly even says it was a game changer helping her husband get the nourishment he needed during treatment. I'm sure others will share their tips for making it work.

How is your wife doing with this news?

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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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Hi, I was diagnosed with cancerous tumor in lower esophagus several months ago. The tumor was preventing me from eating solid foods. I have now had 3 rounds of chemo and the latest PET scan showed a 40% reduction in the size of the tumor. I can now eat solid food again. I have had a feeding tube since the initial diagnosis and get 6 feedings a day of ISOSOURCE which provides over 2,000 calories plus protein. The next step for me is radiation and chemo for 6 weeks starting in late December. My chemo doc says there is about a 50% chance that all the cancer will be gone at the end of radiation and chemo. Right now the cancer is just in the tumor inside the lower esophagus and a couple of local lymph nodes. I was not considered a candidate for surgery to remove the section of the esophagus with the tumor. I'm 77 and in generally good health but I am on daily medications for high blood pressure and tendency to go into atrial fibrulation coming out of surgery. I'm hoping for good results in the new year as I plan to live another 20 years like my mom so Charlotte and I can enjoy watching our grandchildren graduate from college, get married, and have our great grandchildren. Happy holidays!

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@dsh33782

Hi, I was diagnosed with cancerous tumor in lower esophagus several months ago. The tumor was preventing me from eating solid foods. I have now had 3 rounds of chemo and the latest PET scan showed a 40% reduction in the size of the tumor. I can now eat solid food again. I have had a feeding tube since the initial diagnosis and get 6 feedings a day of ISOSOURCE which provides over 2,000 calories plus protein. The next step for me is radiation and chemo for 6 weeks starting in late December. My chemo doc says there is about a 50% chance that all the cancer will be gone at the end of radiation and chemo. Right now the cancer is just in the tumor inside the lower esophagus and a couple of local lymph nodes. I was not considered a candidate for surgery to remove the section of the esophagus with the tumor. I'm 77 and in generally good health but I am on daily medications for high blood pressure and tendency to go into atrial fibrulation coming out of surgery. I'm hoping for good results in the new year as I plan to live another 20 years like my mom so Charlotte and I can enjoy watching our grandchildren graduate from college, get married, and have our great grandchildren. Happy holidays!

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Don,
Sounds like you will have a happy ending to your adventure!!!!

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@lori57216 my husband was diagnosed in February 2022. His tumor was located in the lower abdomen right at the junction of his stomach. They did a round of chemo and radiation that was pretty hard on him. He was not able to eat or drink. He was hospitalized with dehydration / malnutrition and they put a G-tube (feeding tube into his stomach). It was a GAME CHANGER! He was then getting the nutrition he needed to fight!
He had surgery in July 2022 to remove the greatly reduced tumor and part of his stomach. They took at the G-tube and put in a J-Tube (this is inserted directly into your intestines). He still has it and gets 75% of his nutrition from enteral feeding. He is able to drink and eat (very small portions) and is getting stronger each day. Aside from a bout with COVID around thanksgiving, he’s doing really well.
You’ve got this! Stay strong, get your fluids and nutrition and try to be active. That helps physically and mentally!

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@socalkelly

@lori57216 my husband was diagnosed in February 2022. His tumor was located in the lower abdomen right at the junction of his stomach. They did a round of chemo and radiation that was pretty hard on him. He was not able to eat or drink. He was hospitalized with dehydration / malnutrition and they put a G-tube (feeding tube into his stomach). It was a GAME CHANGER! He was then getting the nutrition he needed to fight!
He had surgery in July 2022 to remove the greatly reduced tumor and part of his stomach. They took at the G-tube and put in a J-Tube (this is inserted directly into your intestines). He still has it and gets 75% of his nutrition from enteral feeding. He is able to drink and eat (very small portions) and is getting stronger each day. Aside from a bout with COVID around thanksgiving, he’s doing really well.
You’ve got this! Stay strong, get your fluids and nutrition and try to be active. That helps physically and mentally!

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socalkelly,
I was dx'd (diagnosed) Oct. 2019. started tx's (treatments: chemo, radiation) Dec. 2019.
Surgery @ St. Mary's hospital / Mayo / Rochester, MN April 15, 2020. In the hospital for 2 wks. NPO (nothing per oral / mouth) for 10 wks. J tube in lower intestine as they had to bring my stomach up and attach to what remained of my esophagus. I'm doing real well!!!! My 2 teams of Oncologists ( Mayo & here @ the cancer center in Willmar, MN are very pleased with my over all recovery. 🙂

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David, I understand your fear and uncertainty. I am a 3+ yr survivor of Stage 4 squamous cell esophageal carcinoma. I am still undergoing treatment at Duke Cancer. Trust me, you are in good hands. Their medical and nursing staff are superb and have provided me with excellent care and support throughout my battle with this dreaded disease. Due to radiation therapy induced esophageal strictures, I am unable to eat or drink. I've had a G tube in place since June 2021. It's problematic at times as it occasionally gets clogged from medications or food and has fallen out due to deflation of the anchoring balloon. Generally, these issues are easily rectified but it's critical that you keep the tube well flushed after every drug or feeding infusion and that you keep the area around the tube insertion (stoma) clean to prevent infection. All in all, while G tubes can be a pain if you don't actively maintain them they are quite effective in allowing you to recieve adequate nutrition to maintain weight and muscle mass. Embrace the suck and carry on.

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@colleenyoung

Welcome @ddunavin,
I'm sure that this was not the news you were hoping for on Thanksgiving. I can understand your need for reassurance that the tumor hasn't spread. Tumors of any size can metastasize and some large tumors can stay contained in the esophagus. Naturally only the tests will be able to determine if it has spread. It sounds like your doctors are doing everything to assess the stage.

This is an uncertain time. Fellow survivors and caregivers like @dsh33782 @johnstawicki @kissingrhino @sjw6358 @doglover888 @survivorsuz @puprluvr @karly @davevb @margaretdv @atafitness @lori57216 @naomicanada know this first hand. Some have been in your shoes very recently. Others years ago.

Many patients worrying about the feeding tube. I get that. @socalkelly even says it was a game changer helping her husband get the nourishment he needed during treatment. I'm sure others will share their tips for making it work.

How is your wife doing with this news?

Jump to this post

Hello ddunavin,

I was diagnosed Dec of 2018 with esophageal cancer. Staged @ 2 but surgeon said stage 3 since one lymph node was involved. I had 5 rounds of chemo and 25 rounds of radiation. I had a difficult time swallowing initially but after a few rounds of radiation, it became easier to swallow. I had the Iver Lewis surgery April 2019, and a feeding tube was installed as well. On the 2nd day after surgery, I was taken to respiratory therapy to help rid my lungs of fluid since I was in surgery for 7 hours. I walked several times a day with all of my tubes, gradually walking farther each day. The day before I was released from the hospital, we started the feeding tube. Without it I would have lost too much weight as it was not possible to eat enough to give me the calories I needed. I had the feeding tube for over a month as I slowly started to eat following the dietary guidelines from Mayo.
Don't fear the feeding tube-it'll sustain you as you heal from surgery with your new anatomy.
Take each day at a time, don't worry about tomorrow, and trust your care team. Best wishes for good news. Take care!

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i have had 13 out of 28 radiation treatments and 3 chemo infusions out of 6 so far…after my last round of treatments on 1/3/23 i wait 3 to 5 weeks, then have surgery to remove tumor and affected lymph node(s)…with help from a team of specialists at HOCC -oncologist, radiation, surgeon, speech, dietician, financial, nurses, etc. i am confident i can beat this!

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And ,of course, the care from my wife, Denise-who is the love of my life…she makes the best smoothies on earth!

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