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.

@deepdive1967

Please send me the link and any instructions

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Our twice-weekly Zoom calls are as follows:

Wednesdays, 6pm Eastern
Sundays, 9am Eastern

They usually last 90 minutes give or take, but just depends on newbies coming along or what needs or questions folks have. Pretty informal (we're not doctors... so we talk differently to each... patient to patient). We have some laughs, have such love for each other... but when necessary, we get down to business and answer with solid advice. We've been doing these since May, 2021. The Zoom codes are:
ID - 455 028 4795
Passcode - tuiBE5

Or here's the one-touch link:
https://us06web.zoom.us/j/4550284795?pwd=UjBHQ0J2V1pOc21SOExTR2N1UXNpQT09
Be well,
Gary

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@deepdive1967

I was stage 0 when diagnosed, very early, that is why they recommended going straight to surgery. I had my surgery done at IU med center in Indianapolis 9/7/10 and was released 3 weeks later. During my time there I complained about not being able to breath and they daily took X-rays and said nothing was wrong. My thoracic surgeon was dismissive to my complaints and I was sent home, I was home a week when I was found passed out and rushed back with a punctured lung that was full of blood.

I had to have my entire Ivory/Lewis incision reopened to repair the lung and rewire the ribs back together. After this I suffered for 8 yrs, in and out of different hospitals around Indy, before finally going to the Mayo clinic.

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Was Dr. Kessler your surgeon?? I had my surgery at IU also and Kessler was the surgeon.

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@v132077

Was Dr. Kessler your surgeon?? I had my surgery at IU also and Kessler was the surgeon.

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YES...unfortunately. Hopefully your experience with him was better?

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@lauriegp

Im in the same boat and yes it is scary. Hoping to get the surgery done. Ive had the feeding tube in for a month and do manuel feedings which I prefer. I got a good pill crusher when I was in the hospital so everything goes in the tube. While doing chemo and I feel too bloated I can cut back a bit. Will do my 2nd round of chemp in 2 days. So far so good. Best of Luck to you and your husband

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Hi @lauriegp, how did round 2 of chemo go? How are you doing?

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@deepdive1967

YES...unfortunately. Hopefully your experience with him was better?

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That explains why you use the term “dismissive”. Kessler was not the kind to admit he may have made a mistake or your issue could be caused by the surgery. I had issues after my surgery also, and am still dealing with them 5 years later. The only positive thing I have to say about my experience at IU is I am still cancer free. I have my 5 year scan this week and am confident it will be a good one. I quit going to IU for my medical issues a couple months after surgery and found new and better doctors elsewhere. It was too late to undo what was done but I am getting by fairly well these days. Take Care and Good Luck!!

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