My husband diagnosed 4 weeks ago -Esophageal Cancer- HELP

Posted by natalie1979 @natalie1979, Dec 14, 2023

Hello,
I am looking for advance and success stories to help us navigate this difficult journey. My husband, just 50, started this journey not feeling in August, dropped about 20 lbs and started throwing up while eating. He scheduled an endoscopy and colonoscopy and in the office they told us he had a bleeding mass in his 3rd quadrant. That day we got a CAT scan which revealed a spot on his liver, thank god it turned out to be a hemangioma (blood vessels) - the PET scan revealed it had not metastasized to his organs, so we are in a window of cure as the doctor stated. We are working with a team of doctors at a Pennsylvania a Hospital in the thoracic surgery, division. All the doctors seem wonderful, and have great reviews and accolades. He had a feeding tube placed last week, which landed us in the hospital for four days as they want it to monitor his feeds, and he had his port placement this week. To say the least we have been so scared and a roller coaster of emotions. My husband still hasn’t cried in front of me. I’m 44 years old and I’m scared shitless and I consider myself a super strong. This is definitely the hardest thing I/ we ever had to face. My husband was still eating soft food like mashed potatoes, soups, yogurt, smoothies, and pudding but yesterday he started throwing up while eating a smoothie so it’s been hard to get to the a lot at 2200 cal that the dietitian wants him to eat. Were using the feeding tube at 100 mL per hour. He gets a lot of cramping in his stomach after the feeds and we tried feeding at night but he’s uncomfortable on an incline. I can’t sleep, which is always had sleeping issues more over. He usually sleeps on his stomach and now can’t do to the port in the feeding tube. Last night he tried to take an Tylenol and it got stuck in his throat and threw up. We start chemotherapy on Friday of this week, and I’m scared that due to all the complications with getting him allotted calories already that this is going to fail. The plan is that he will be doing chemotherapy for two months to shrink the tumor and hopefully attack the lymph nodes that are lighting up on his pet scan if all goes well, he would move to radiation for 6 to 8 weeks targeted on his third quadrant of his esophagus, if that goes well, he would move to surgery after four weeks of rest. They prefaced the post up with about 12 weeks of recovery and about 1 to 2 weeks in the hospital. They placed a feeding tube preemptively because he had lost so much weight and they wanted to keep his caloric intake up and didn’t want to have to operate during the treatment which would altar in delay possible outcomes. The doctors didn’t tell us the stage of the cancer but they said it was aggressive and therefore they’re attacking it with an aggressive treatment and someways. I’m glad we don’t know the staging. We are so numb and feel like our lives have been ripped out from under her feet. I can’t stop crying uncontrollably I took leave from work to care for Joe and to deal with my own emotions and Joe has not been working since he found out. On top of the health stress. We also now have financial stress and worry. I’m just wondering with all of this what to expect. Although we are so scared and so worried I’m grasping desperately to Hope.

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

@cometsmom

He's doing well, currently 9 months out from the end of his treatment and all CT scans and endoscopies since then show no evidence of disease. Praying he doesn't have another recurrence as all that is left for him is more chemo. He couldn't have the surgery because of cardiac problems and then he was found to be stage 4 anyway which took surgery off the table anyhow. Wishing for the best outcome for your dad ❤️, and for you. Never give up hope!

Jump to this post

That's great to hear. What considered him stage 4? The Dr's act like they don't stage the cancer until futlrther into the treatment. On CT they seen a spot on his lungs and lymph nodes but act like chemo will take care of it so it doesn't change is plan.

REPLY
@s6819103

That's great to hear. What considered him stage 4? The Dr's act like they don't stage the cancer until futlrther into the treatment. On CT they seen a spot on his lungs and lymph nodes but act like chemo will take care of it so it doesn't change is plan.

Jump to this post

When they first put the port in they also did a feeding tube. The laparoscopy they did when they placed the tube showed nodules on the liver which all tested positive for squamous cell CA. That was in 2018 when he was first diagnosed. He went into remission in 2020 and did well until the recurrence in February 2024. They did stage it almost immediately though after he was diagnosed. I’m not sure why they wouldn’t know or have an estimate regarding the stage. What other tests are planned?

REPLY

He had a pet scan and maybe they are waiting to see those results. He is refusing a feeding tube. Any recommendations on liquids to keep his weight up?

REPLY
@dsh33782

@hope24 all
I was diagnosed with esophageal cancer last fall when I could not swallow food due to tumor in my lower esophagus. I got feeding tube and port and started radiation and chemo.
Today the esophageal cancer is gone along with the feeding tube. Success is possible and I hope your treatment goes well. I'd be happy to try and answer questions?

Jump to this post

What stage and type of cancer did you have? My husband’s EG cancer is stage 4 squamous cell. We are looking for more success stories!!! Thanks for sharing yours.

REPLY
@s6819103

He had a pet scan and maybe they are waiting to see those results. He is refusing a feeding tube. Any recommendations on liquids to keep his weight up?

Jump to this post

I think (but might very well be wrong here, maybe someone else will jump in) that the endoscopy and endoscopic ultrasound are how they staged Jeff initially, He had the CT scan first, they saw the mass and then did the endo and EUS. The PET scan in 2018 lit up in the esophagus and nearby lymph nodes only, (thought to be stage 3 then), but the laparoscopy and washings they did while putting the feeding tube in showed the spread. He was deemed stage 4.
He didn't want the feeding tube either. When his weight dropped below 110, he finally agreed. I think it helped save him at that time. He had it for 8-12 months if I remember correctly.
This time, he was strongly against the feeding tube, pretty much refused it. We used Ensure Plus as a supplement, a lot of it. He got through without the G-tube thankfully. It's not a risk to take though (in my opinion...) because the weight loss will happen fast and furious.
I will send you a PM if you want to talk. This is not easy to navigate. Hang in there. ❤️
Lynn

REPLY
@mintman

What stage and type of cancer did you have? My husband’s EG cancer is stage 4 squamous cell. We are looking for more success stories!!! Thanks for sharing yours.

Jump to this post

hope24
My EC was stage 3 with tumor in lower esophagus. After 28 days of chemo and radiation, the tumor was gone and scans were cancer free. Let us know how treatment is going?
Don

REPLY
@mintman

What stage and type of cancer did you have? My husband’s EG cancer is stage 4 squamous cell. We are looking for more success stories!!! Thanks for sharing yours.

Jump to this post

My sister has the same. She is having a hard time laying down for the ct scan. Trying again today.

REPLY
@dsh33782

hope24
My EC was stage 3 with tumor in lower esophagus. After 28 days of chemo and radiation, the tumor was gone and scans were cancer free. Let us know how treatment is going?
Don

Jump to this post

Hi Don
How long have you been clear? So you didn't have the surgrey? How was your eating during this time?

REPLY
@s6819103

Hi Don
How long have you been clear? So you didn't have the surgrey? How was your eating during this time?

Jump to this post

Hope24
I have been clear of EC since 2024. But I have had a couple of other cancers which are now clear - kidney and thyroid. No I never had EC surgery just the chemo and radiation. I did have surgery for kidney and thyroid.
I didn't want to eat for several months during EC chemo and radiation. I just had nurishment via jtube.
Don

REPLY
Please sign in or register to post a reply.