Mass found Suspected Stage 4 Esophageal Cancer squamous cell

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

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.

Thank you Aimee!

Hi Aimee,
So happy to hear your Sister is doing better City of Hope is supposed to be excellent we've been going thru a lot of tests which were scheduled right away after his routine endoscopy I'm sure that could be why it takes a month before you start treatment. I can't thank you enough for giving me hope and the stories you've heard are inspiring.

I'm finishing my last treatment on Friday for an Ovarian Cancer recurrence I'm back in remission seems surreal to me I'm thankful that I've learned how to navigate a cancer journey.

Where our healthcare is concerned, we need to be our own advocate, plus anyone else who can help you. My sister had a esophageal cancer diagnosis which turned out to be stage IVb, for one reason or another it was over a month before her chemo started (to which she is reacting well) and during this time, the spots (mets) on her liver multiplied. She got into City of Hope and seems to be doing better…she can now eat and swallow, has appetite 2 months into her treatment.

I sure hope things go well for you…..there are many, many encouraging tales of survival on this forum. Don’t get discouraged, just don’t delay in getting treatment. The things I’ve seen here are inspiring. I can’t help but think and pray we’re on the brink of finding a cure.

All my best to you,
Aimee

Thank you!

My Husband had his routine Endoscopy/Colonoscopy also last week he was immediately referred the next day to an oncologist a day later he had a CT Scan tomorrow a Pet Scan and next week an endoscopy with CT to stage. Our center has a Patient Coordinator that scheduled all of them perhaps you can inquire with your center to speak with one.

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.

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

@mlyles
I had a similar situation with my gastro doc doing endoscopy and finding mass in my lower esophagus. He took a biopsy and it confirmed it was cancer. I live in the Tampabay Florida area so he transferred me to Moffit Cancer Center in Tampa. I met with surgeon who decided I was not a good candidate for surgery at age 78 so then I met with chemo and radiation docs and started 28 radidation and chemo treatments. The tumor shrunk 30% after first 3 treatments and after 28 the tumor was gone. I had some side affects including caughing, being tired, and losing appetite. I was on feeding tube for a couple of months to help give me protein and calories. But the treatment worked. I'd be happy to try and answer any questions you may have.