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My husband diagnosed 4 weeks ago -Esophageal Cancer- HELP
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.
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I'm crying reading your post. So sorry. the beginning is the toughest. Hang in there. How is Joe (and you) doing now?
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1 ReactionThinking of you, @lisew
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1 ReactionPraying for you, my husband was just diagnosed with EC June 20 and we found out it’s stage 3 July 24. Any advice is appreciated 🙏🏻🙏🏻🙏🏻
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1 ReactionMy husband was diagnosed July 24 with stage 3 EC any advice is appreciated. I am pray for you and your husband.
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2 Reactions@gburdette, what treatment is being recommended for your husband? How are you doing?
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1 ReactionHey there! We begin proton radiation next Tuesday for six weeks with chemo every other week. I’m praying that he doesn’t have to have surgery or feeding tube. It’s really still a shocker for us. The port surgery is Friday the 9th. Thank you so much for asking 🙂
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3 ReactionsStop having any feelings or biases about any part of this EC journey... what we're all praying for is to be free of EC... to reach NED status... and stay there. So we do what is required to achieve this, to give us our best odds. I had no clue what I needed... no clue if I would live and have great results. And even today I'm still not sure, although I'm over 4 years post-op. But the pieces of this puzzle fit together nicely sometimes... if you let them. My J tube went in the week after I was diagnosed... and I kept it for 8 months... 4 after the esophagectomy. But the chemo, radiation, surgery, immunotherapy... all done in order... got me to where I am today. But we're all forced to sit back and see how our bodies respond to all the treatments and procedures and surgeries they do to us. And this includes our many doctors... they have no clue either... they sit back and watch too... then decide what's next for each of us. Be well.
Gary
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1 ReactionHello, I am a 14yr survivor. For the first 8 yrs after surgery I had a very difficult time due to a botched surgery. I was constantly bloated and was in constant fear when going to sleep because of horrible aspiration. I would aspirate on liver bile, which is like 100x stronger than stomach acid, it turned me into a walking flame thrower.
After 8 yrs my quality of life was so bad that I was ready to cash it in but decided to reach out to the Mayo clinic for a consultation that I could trust. As soon as I made the phone call they told me to get there ASAP so I made the 10hr drive. After a week of tests they told my that the original surgeon had badly put me back together and that they could fix me but they needed a few months to game plan.
Ended up that they had to do a complete revision along with a roux-n-y. They saved my life.
My life now is wonderful, I still have a occasional issue with the liver bile but it's 90% better and they put me on a off label prescription for the bloat and constipation that turned out to be a game changer for me.
I just turned 57 and can honestly say I look forward to another 20+ yrs. Prayers to you and your husband and if anyone that reads this has any questions, I would love to be of assistance.
Scott
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3 ReactionsWhen it comes to post surgery life you need to take what the Drs recommend with a huge grain of salt. You body adapts in it's own way and no one can predict that. I was told no more spicy foods, steak or beef, salad.... It was a long list. Now 14 yrs later I can can have pretty much anything except for certain chocolates that make me dump.
Give it time and experiment.
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1 ReactionThis is very true, I'm at 14yrs and my body is still adapting. My biggest struggle is lack of energy which in the grand scheme of things is minor.