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Mass found Suspected Stage 4 Esophageal Cancer squamous cell

Posted by tbkomparda @tbkomparda, Jan 17 5:21pm

Hello,
My Husband had a colonoscopy/endoscopy yesterday a mass the suspects esophageal cancer while we await biopsy results we have been referred to a medical oncologist who specializes in this type tomorrow his symptoms over the last 5 months have been anemia, weight loss and most recently a lot of belching he can swallow fine our hospital is NW Chicago who has a proton center as an Ovarian Cancer Survivor myself I a bit familiar with chemo but not with this type as I’m very scared would appreciate any info on treatment protocol and survivor stories thank you!

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

Mentor
Don Higgins, Volunteer Mentor | @dsh33782 | Feb 6 9:18pm
In reply to @tbkomparda "Hi Don Thank you for your post regarding the feeding tube. What did your chemo/radiation schedule..." + (show)
@tbkomparda

Hi Don
Thank you for your post regarding the feeding tube. What did your chemo/radiation schedule consist of how many days of each? In addition to the fatigue and coughing were you nauseous? We’re you able to be ambulatory on some days?

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Tammy
I had chemo for 3 weeks before starting both chemo and radiation for 28 days spread over 5 days per week. I received mediation which prevented nausea. I was able to walk the whole time but was very tired all the time. Let me know if I can answer more questions.
Don

REPLY
tbkomparda | @tbkomparda | Feb 6 8:06pm
In reply to @dsh33782 "Hi Tammy I got the feeding tube along with port very soon after esophageal caner diagnosis..." + (show)
@dsh33782

Hi Tammy
I got the feeding tube along with port very soon after esophageal caner diagnosis as I could not swallow food. I was on ISOSOURCE canisters for nurshment for several months during radiation and chemo which successfully removed the cancer tumor. The radiation and chemo made me very tired all the time and I also was caughing a lot. I am
feeling much better now. Let me know if I can answer other questions.
Don

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Hi Don
Thank you for your post regarding the feeding tube. What did your chemo/radiation schedule consist of how many days of each? In addition to the fatigue and coughing were you nauseous? We’re you able to be ambulatory on some days?

REPLY
1 reply
rschreib | @rschreib | Feb 3 5:29pm

I have recently been diagnosed with gastroesophageal cancer. My symptoms came out of nowhere. Last Sunday night I began vomiting blood after dinner. My husband and I went to the ER at which point I was intubated. The doctors did an endoscopic ultrasound, found a mass in the area between my esophagus and stomach, which they biopsied. When I was in the hospital, I also had a CT scan and PET scan. By Thursday I received the pathology report indicating that I have gastroesophageal cancer. I met with oncologists who told me that my liver will need to be biopsied, as an area lit up on the PET scan. Once we have the results, we will have a better sense as to whether this cancer is localized or has metastasized, which will enable my oncologist to determine staging and a treatment plan. We will find out more when we meet with her on Feb. 14. (A quick side note – I am not the usual candidate for this kind of cancer, but since both my father and aunt had pancreatic cancer, it's likely related in some way to my genetic makeup. However, nothing came up with my previous genetic tests.) I will be asking questions to members of this support group as I find out more about my treatment plan. Many thanks in advance.

REPLY
2 replies
Mentor
Don Higgins, Volunteer Mentor | @dsh33782 | Feb 3 4:57pm
In reply to @tbkomparda "Hello Don If I may ask were you put on a feeding tube when initially diagnosed..." + (show)
@tbkomparda

Hello Don
If I may ask were you put on a feeding tube when initially diagnosed due to swallowing difficulties my Husband presently can swallow eat fine but has discomfort in mid abdomen and excruciating we’re going thru NW Chicago an accredited cancer center we had the CT Scan over the weekend mass is 2.5 cm it’s been a whirlwind of tests pet scan in a couple of days, next week endoscopy with CT to stage in process of setting up radiology consult and oncology surgeon consult. Was the radiology tough? So glad you’re in remission with stage 4 gives us hope. Thank you Tammy

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Hi Tammy
I got the feeding tube along with port very soon after esophageal caner diagnosis as I could not swallow food. I was on ISOSOURCE canisters for nurshment for several months during radiation and chemo which successfully removed the cancer tumor. The radiation and chemo made me very tired all the time and I also was caughing a lot. I am
feeling much better now. Let me know if I can answer other questions.
Don

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 3 2:45pm
In reply to @mlyles "Don, thank you for your reply. I am scheduled for an appointment today to go over..." + (show)
@mlyles

Don, thank you for your reply. I am scheduled for an appointment today to go over the biopsy results. I am encouraged by your results and ready to move forward on this thing. I’m in NW Oklahoma/SW Kansas and there are no large hospitals near. There are oncologists from Wichita that travel out here a few days a week so I’m not even sure yet where I’ll receive treatment. I’ve had some family and friends encourage me to try to get into MD Anderson in Houston. I’m 58 and in good health (except for the obvious as far as I know) so I hope all options will be available.

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@mlyles, I wonder if Mayo Clinic in Rochester, MN might be an option for you. If you'd like to seek a second opinion from Mayo esophageal cancer experts, here's where to request a consult http://mayocl.in/1mtmR63

What did you learn from the biopsy? How are you doing?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 3 2:43pm
In reply to @tbkomparda "Hello Don If I may ask were you put on a feeding tube when initially diagnosed..." + (show)
@tbkomparda

Hello Don
If I may ask were you put on a feeding tube when initially diagnosed due to swallowing difficulties my Husband presently can swallow eat fine but has discomfort in mid abdomen and excruciating we’re going thru NW Chicago an accredited cancer center we had the CT Scan over the weekend mass is 2.5 cm it’s been a whirlwind of tests pet scan in a couple of days, next week endoscopy with CT to stage in process of setting up radiology consult and oncology surgeon consult. Was the radiology tough? So glad you’re in remission with stage 4 gives us hope. Thank you Tammy

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Hi Tammy, I'm tagging @dsh33782 to make sure he sees your question about whether he was on a feeding tube or not as well as his experience with radiation.

How did the endoscopy go? Have you had the consults with radiology and oncology? What are next steps for you guys?

REPLY
tbkomparda | @tbkomparda | Feb 2 9:06am
In reply to @tbkomparda "Hello, I have posted in the last week regarding my Husband's diagnosis a couple of you..." + (show)
@tbkomparda

Hello,
I have posted in the last week regarding my Husband's diagnosis a couple of you were kind enough to give me their contact but after the barrage of tests we've went thru this week I don't have it in me we've had CT/Pet Scan/Endoscopy with CT and a lymph node biopsy on the 15th. We saw the Oncologist today as the Endo CT was staged at 3A2 she told us there are a few lymph nodes in the sub clavicle that although don't seem enlarged lit up on the Pet Scan she told us that if they come back positive, he's basically a stage 4 and incurable they don't do surgery I'm all for honesty but really did not like her demeanor I told her from what I've read and the GI guy that initially did the biopsy said squamous cell is very sensitive to Chemo/radiation and why wouldn't proton be an option for the lymph nodes this is a University hospital we do live in a Chicago suburb and could go to Mayo Rochester for a consult needless to say we are beside ourselves any positive stories I can show my Husband.

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Thank you Henry
Great News! Thank you for your prayers can you tell me the name of your surgeon?

REPLY
mrgvw | @mrgvw | Feb 2 9:00am
In reply to @tbkomparda "Gary Thank you your response gives us hope I don't think my Husband is up to..." + (show)
@tbkomparda

Gary Thank you your response gives us hope I don't think my Husband is up to the Zoom calls mentally trying to wrap is head around it. Do I access the Zoom calls thru this website? Also I was watching a youtube video of a survivor of stage 4 that had cryotherapy? Do you have any knowledge of this treatment? Thanks a bunch Tammy

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I'll take this privately...

REPLY
henrysilverio12 | @henrysilverio12 | Feb 2 8:52am
In reply to @tbkomparda "Hello, I have posted in the last week regarding my Husband's diagnosis a couple of you..." + (show)
@tbkomparda

Hello,
I have posted in the last week regarding my Husband's diagnosis a couple of you were kind enough to give me their contact but after the barrage of tests we've went thru this week I don't have it in me we've had CT/Pet Scan/Endoscopy with CT and a lymph node biopsy on the 15th. We saw the Oncologist today as the Endo CT was staged at 3A2 she told us there are a few lymph nodes in the sub clavicle that although don't seem enlarged lit up on the Pet Scan she told us that if they come back positive, he's basically a stage 4 and incurable they don't do surgery I'm all for honesty but really did not like her demeanor I told her from what I've read and the GI guy that initially did the biopsy said squamous cell is very sensitive to Chemo/radiation and why wouldn't proton be an option for the lymph nodes this is a University hospital we do live in a Chicago suburb and could go to Mayo Rochester for a consult needless to say we are beside ourselves any positive stories I can show my Husband.

Jump to this post

Good morning. I would go to Mayo. I was diagnosed stage 3 in 2020, did their radiation and proton beam radiation followed by esophagectomy. I was told the same thing about not operating on stage 4 but my surgeon told me she would operate even at stage 4. 4 years later I am healthier that I was pre-diagnosis. Eating habits changed but there is life after cancer. Quality of life is good. I am 70 years young. I will pray for your husband as he deals with his battle.

REPLY
tbkomparda | @tbkomparda | Feb 2 8:34am
In reply to @mrgvw "Don't worry about any doctor's demeanor... because statistically she is correct. But it matters little. What..." + (show)
@mrgvw

Don't worry about any doctor's demeanor... because statistically she is correct. But it matters little. What matters is getting treatments going and see how he responds... who've no doctor can predict. They just prescribe the treatments and then wait til the next scan comes in... as they live scan to scan, just like us patients do. I know many stage 4s who are doing just fine 3, 4, 5, 6 years later... totally NED! You wanna chat with a few? Just pop on our free Zoom calls... we hold these twice-weekly. Next one is Sunday at 9am Eastern. But even these stage 4s still think of themselves as stage 4s... they know their cancer got out of the esophagus and has appeared in far off lymph nodes and organs. Nothing can change that fact... other than they find a chemo and immunotherapy regimen that took care of business. They no longer do chemo, but some continue their 30 minute immunotherapy infusions every 3 or 6 weeks as they believe it is what is keeping them NED. Sure, they probably don't have to any longer... but can't say I blame them. I think one guy is on his 83rd Herceptin infusion... another is on his 103rd Keytruda infusion. But since they see little to no side effects they figure why not. Don't ask me about insurance and the 1 to 2 year infusion protocol... I have no clue! They just keep paying... nice!

Ok... I'm not a stage 4... just a plain ol vanilla stage 3, T3N1M0 staged EC patient, still on my own journey. But I'm in my 4th year post-op... gotta shot now... eating fairly normally... sleeping and pooping pretty normally too. Go figure. But... we don't sugarcoat on our Zoom calls... we give you real tangible advice and guidance... because we've talked with hundreds of our fellow patients and caregivers. Not much we haven't seen.

Hang tough,

Gary
Southern California

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Gary Thank you your response gives us hope I don't think my Husband is up to the Zoom calls mentally trying to wrap is head around it. Do I access the Zoom calls thru this website? Also I was watching a youtube video of a survivor of stage 4 that had cryotherapy? Do you have any knowledge of this treatment? Thanks a bunch Tammy

REPLY
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