1. < Esophageal Cancer

Just diagnosed with esophageal cancer.

Posted by knite122 @knite122, Apr 7, 2023

Hello group, I was just diagnosed with esophageal cancer a few days ago. My Gastro Dr. called me a few days after my Upper Endoscopy to say the Pathologist confirmed the cancer. For the last five years I've gone from Barretts esophagus to low grade dysplasia, to high grade dysplasia. The Dr. used Radial abrasion to burn it out twice and liquid nitrogen the third time, each time it came back. Now its cancer and I've been told to see a Thoracic Surgeon. I have no idea what to expect until I see him and was hoping someone can give me an idea. Tho good is obvious, but what will the bad be? Thanks in advance.

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Mentor
Don Higgins, Volunteer Mentor | @dsh33782 | Apr 9, 2023
In reply to @colleenyoung "@knite122, I'd like to add my welcome. As you can see from the experiences shared by..." + (show)
@colleenyoung

@knite122, I'd like to add my welcome. As you can see from the experiences shared by @dsh33782 @dave640 @doglover888, treatments plans are as individual tailored to each patient, depending on multiple factors including size and location of the tumor, stage as well as your age, overall health status and personal preferences.

Here's some information from Mayo Clinic about treatment options:
https://www.mayoclinic.org/diseases-conditions/esophageal-cancer/diagnosis-treatment/drc-20356090
If you scroll to the bottom of the link, you'll see a handy list of tips of how to prepare for your upcoming appointment and questions to ask.

Don, Dave and Doglover (the 3 Ds), what questions do you wish you had asked your team at that first consult to discuss treatment options?

@knite122, it sounds like your cancer was caught early since you were being closely monitored with Barrett's esophagus. Do you know the location or size of your tumor?

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Colleen

If I had known then what I know now, I would have asked more questions about the unpleasant side effects:

1. How long does the feeling of being tired all the time last?
2. Is it ok to take Imodium to deal with periodic diarrhea?
3. Is it ok to take Zofran for periodic nausea?
4. Is there anything to help reduce the constant coughing and spitting up phlegm?
5. Is there anything to reduce the tingling sensation in hands and feet?

REPLY
knite122 | @knite122 | Apr 9, 2023
In reply to @colleenyoung "@knite122, I'd like to add my welcome. As you can see from the experiences shared by..." + (show)
@colleenyoung

@knite122, I'd like to add my welcome. As you can see from the experiences shared by @dsh33782 @dave640 @doglover888, treatments plans are as individual tailored to each patient, depending on multiple factors including size and location of the tumor, stage as well as your age, overall health status and personal preferences.

Here's some information from Mayo Clinic about treatment options:
https://www.mayoclinic.org/diseases-conditions/esophageal-cancer/diagnosis-treatment/drc-20356090
If you scroll to the bottom of the link, you'll see a handy list of tips of how to prepare for your upcoming appointment and questions to ask.

Don, Dave and Doglover (the 3 Ds), what questions do you wish you had asked your team at that first consult to discuss treatment options?

@knite122, it sounds like your cancer was caught early since you were being closely monitored with Barrett's esophagus. Do you know the location or size of your tumor?

Jump to this post

Hello Colleen,
Thanks for the response. From what I can gather so far, the tumor is small and located under the first lining of the esophagus where it meets the stomach. Last I spoke to the gastroenterologist’s medical assistant, she told me the complete results weren’t in because additional stains were sent in. I’m not sure what that means but from what I’ve been reading, the high grade dysplasia that I’ve had four times is at the 0 stage of 0-4. I’ll keep checking though.

REPLY
doglover888 | @doglover888 | Apr 10, 2023
In reply to @colleenyoung "@knite122, I'd like to add my welcome. As you can see from the experiences shared by..." + (show)
@colleenyoung

@knite122, I'd like to add my welcome. As you can see from the experiences shared by @dsh33782 @dave640 @doglover888, treatments plans are as individual tailored to each patient, depending on multiple factors including size and location of the tumor, stage as well as your age, overall health status and personal preferences.

Here's some information from Mayo Clinic about treatment options:
https://www.mayoclinic.org/diseases-conditions/esophageal-cancer/diagnosis-treatment/drc-20356090
If you scroll to the bottom of the link, you'll see a handy list of tips of how to prepare for your upcoming appointment and questions to ask.

Don, Dave and Doglover (the 3 Ds), what questions do you wish you had asked your team at that first consult to discuss treatment options?

@knite122, it sounds like your cancer was caught early since you were being closely monitored with Barrett's esophagus. Do you know the location or size of your tumor?

Jump to this post

Hi Colleen. Looking back, I wish I had asked what complications might arise. Having aspirated hours after my surgery, I developed pneumonia, 2 blood clots, had 9 blood transfusions, almost passed twice, couldn't be taken off life support because my heart would race and was in ICU for 7 weeks. Then I had injections in the stomach for 2 months and felt like a pin cushion due to so many tests. BUT I'm stronger today, off oxygen, driving, shopping, camping and life goes on. I refuse to worry about the cancer returning. Tough old bird. Lol. Have a wonderful day!

REPLY
mezsoprano | @mezsoprano | Apr 17, 2023
In reply to @dave640 "Not sure, Colleen. We had some good opportunities to ask questions. Would like to have had..." + (show)
@dave640

Not sure, Colleen. We had some good opportunities to ask questions. Would like to have had a better understanding of the/a non-surgical path following completion of chemo/radiation.
Also, it would have been helpful to know in advance, if possible, that inflammation from radiation would make eating solid food virtually impossible until two weeks following the completion of radiation treatments.
Thanks for asking.

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I was diagnosed with stage 3 of esoph ca. had radiation and chemo. No surgery. I was inoperable as the tumor too close to voice box.
That was 6 years ago . I am doing great and cured.

REPLY
1 reply
dave640 | @dave640 | Apr 17, 2023
In reply to @mezsoprano "I was diagnosed with stage 3 of esoph ca. had radiation and chemo. No surgery. I..." + (show)
@mezsoprano

I was diagnosed with stage 3 of esoph ca. had radiation and chemo. No surgery. I was inoperable as the tumor too close to voice box.
That was 6 years ago . I am doing great and cured.

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Mezsoprano, that is fantastic. I won’t tell my wife. Still singing then?

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Mentor
Don Higgins, Volunteer Mentor | @dsh33782 | Apr 19, 2023

The other thing I didn't know at the beginning was that during much of the chemo and radiation, I had no interest in swallowing food even though the first 3 chemo treatments did shrink the tunor so I could swallow some whole foods (when I was first diagnosed, I could only sip water). I recreived a feeding tube along with port and ended up taking about 6 feeding tube Isosource meals every day for several months during treatment. I have since had feeding tube removed and can hardly wait for endoscopy and PET scan in a few weeks to see if I'm cancer free now. Have you gotten a feeding tube to perhaps give your throat a break if its inflamed?

REPLY
1 reply
socalkelly | @socalkelly | Apr 20, 2023
In reply to @dsh33782 "The other thing I didn't know at the beginning was that during much of the chemo..." + (show)
@dsh33782

The other thing I didn't know at the beginning was that during much of the chemo and radiation, I had no interest in swallowing food even though the first 3 chemo treatments did shrink the tunor so I could swallow some whole foods (when I was first diagnosed, I could only sip water). I recreived a feeding tube along with port and ended up taking about 6 feeding tube Isosource meals every day for several months during treatment. I have since had feeding tube removed and can hardly wait for endoscopy and PET scan in a few weeks to see if I'm cancer free now. Have you gotten a feeding tube to perhaps give your throat a break if its inflamed?

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My husband has had a feeding tube since April 2022. It truly has saved his life! He recently had a stent out into his esophagus and that has enabled him to eat. We’re working towards getting off enteral feeding. 2nd pet scan results next week. Had a major scare that cancer spread to his lungs. Turned out to be a benign mass (BOOP) that is being treated with steroids. Never a dull moment in cancer treatment!

REPLY
1 reply
knite122 | @knite122 | Apr 20, 2023
In reply to @socalkelly "My husband has had a feeding tube since April 2022. It truly has saved his life!..." + (show)
@socalkelly

My husband has had a feeding tube since April 2022. It truly has saved his life! He recently had a stent out into his esophagus and that has enabled him to eat. We’re working towards getting off enteral feeding. 2nd pet scan results next week. Had a major scare that cancer spread to his lungs. Turned out to be a benign mass (BOOP) that is being treated with steroids. Never a dull moment in cancer treatment!

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My prayers are with you both!!

REPLY
knite122 | @knite122 | Apr 21, 2023

Hello group, since making my first post on here last week and being newly diagnosed with esophageal cancer, I’ve read a great deal on line about this cancer. I’m still two weeks away from having my CT scan and my question is this, what’s the average time till surgery after the Thoracic surgeon sees those results? Thanks and I hope everyone is doing well.

REPLY
1 reply
jmp1514 | @jmp1514 | Apr 22, 2023
In reply to @knite122 "Hello group, since making my first post on here last week and being newly diagnosed with..." + (show)
@knite122

Hello group, since making my first post on here last week and being newly diagnosed with esophageal cancer, I’ve read a great deal on line about this cancer. I’m still two weeks away from having my CT scan and my question is this, what’s the average time till surgery after the Thoracic surgeon sees those results? Thanks and I hope everyone is doing well.

Jump to this post

Not all stages or people can have surgery, my husband was one who couldn’t because of the stage.
Have you had the scans, ultrasound, etc, to stage your cancer? Depending on the stage you may need adjuvant therapy pre or post op. Your oncologist will work with your surgeon.

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