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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 wish u the best of luck on your biopsy. 🩷🩷
Hey Natalie,
As best as possible, make the best of your holidays. Going through the cancer journey is definitely a battle. But like any war, soldiers, always regroup, refresh, and cut loose when they are on leave. Then they get back to the battle. I hope you both can do this. So really try to enjoy and take your mind off of it, and then get prepared.
On the first pet scan, they found A couple lymph nodes, but they were called marginal. Unnecessary and not attached organs. They did light up the first time. Because my husband had what they called the 1:2 punch, layman terms, they did chemo and radiation simultaneously. So we don’t really know what killed the cancer more. The chemo or the radiation but they do feel it’s the combination is the most effective. Maybe not every doctor uses it but at our cancer clinic, the radiation oncologist and the oncologist worked very closely as a team to keep an eye on my husband’s labs and progress. Any symptoms that came up, either one could respond to. They were very good. The only rough time my husband had is when he got dehydrated around the Fourth of July holiday weekend. My husband needed rehydration pretty badly and we didn’t want to go to the emergency room for that. The first day they were open, they opened a spot for him to come in for IV therapy. I advocated for him to have it more regularly until he was replenished. This was just after he finished the chemo and radiation regime. Good thing they keep the Mediport in him until the very final assessment of recovery.
The tumor seems to take different shapes in the esophagus during that regime of chemo and radiation. My husband had coughing, nausea, chest pain, etc. They were on fillings. Severe chest pain, radiating down his left arm alerted the nursing me to get him to the emergency room under cardiac presentations . That gives you a ticket to the front of the line so to speak. Especially in a very busy emergency room. However, his heart appeared to be fine. They thought it was pleurisy according to the CT scan. They actually just gave him some Nexium and sent him home. We conferred with his doctors after the weekend and they felt it was more referred pain from the esophagus. The chemo was doing its job and so is the radiation. However, it comes with a price of pain.
That was the only time we went to the emergency room. My husband is very stoic when it comes to pain and medicine. So when he was in excruciating pain, and looking like death warmed over, I knew he was struggling. Of course, he really didn’t want to go to the emergency room, but I had to put my foot down.
Have your husband slow down with eating and perhaps just go straight to the tube feeding. My husband states four weeks on tube feeding if not longer just because he didn’t like the feeling of any food passing through during that phase. It’s quite all right. He should get used to the pump feeding at night, and when he sleeps. My husband slept on the couch many nights just so he could be upright. He hooked himself up to the tube feeding whenever he wanted and unhooked himself when he just felt like walking around or going to the bathroom.
I hooked him up when he just felt too tired and weak to get up at that point. Just to go to the bathroom was enough for him. Like I said, the worst of it came the last two weeks of chemo and radiation and the first 2 to 3 weeks of recovery. The symptoms just kind of got worse. But then it gets better. I was shocked to see when my husband started being more alert, conversing a little bit more and the first time he chuckled about some thing let me know that he finally turned the corner.
Please feel free to ask anything. I hope I can help you through your journey. Remember, it’s not just his journey but it’s yours too. For me, it was hard to wear both hats of being a wife and a nurse. Sometimes I removed my wife hat and was his nurse when I should’ve been his wife.
Patti
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3 ReactionsGod works miracles every day 🙏 Merry Christmas 🤶 🎄
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3 ReactionsI am 77, and got the diagnosis this morning. My problem was also about swallowing food. How long were you on Chemo/Radiation? how long have you been cancer free? Also how old were you at the onset? Thank you for taking the time to answer.
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1 ReactionHi @rcanm, that's especially rough getting the diagnosis of esophageal cancer during the holiday. I'm taggin @dsh33782 (Don) to make sure he sees your questions.
Rcanm, what treatment plan has been suggested for you? Are you a candidate for surgery?
Hi @rcanm
I turn 79 this month. I had 28 chemo and radiation treatments. My tumor shrunk 40% after first 3 treatments. I was on a feeding tube for several months to get enough nurishment from ISOSOURCE canisters. I felt very tired during the treatment and had cough. But when the scan after treatment showed the tumor in my lower esophagus was gone, it was worth it. I did not have any esophageal surgery. Let me know if I can answer more questions?
Don
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2 Reactions@dsh33782 , Would like to talk to you, my husband is going through chemo and radiation treatment as we speak. Thank you in advance.
Hello! If you would like you can private message me.
I would love a supportive friend in this.
@satsai
I'd be happy to talk to you about my experience with esophageal cancer treatment including radiation and chemo.
Don
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2 ReactionsHello All,
Just an update on our treatments. Joe started chemo and he just finished his second round on Friday. After the first round, he was able to eat better and get food down again. I am hoping this means his tumor has reduced a bit. He experiences a lot of nausea and throwing up during treatment rounds. He also has a lot of mucus that he is throwing up? Is this normal?? Also, does any one suggest THC delta 9 oil for nausea!? I have heard a lot about this product for chemo, but I am wondering if anyone had success. Lastly, he has been experiencing issue with his feeding tube feeds. He gets cramping in his intestines and has very smelly gas from this. I am not surprised as the formulas first three ingredients are soy based and Maltodextrin. The feed we were given at the hospital is made by Nestle and is called Nutren. Any insight of these issue would be helpful!!
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