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.
Interested in more discussions like this? Go to the Esophageal Cancer Support Group.
Thinking of you, @lisew
I'm crying reading your post. So sorry. the beginning is the toughest. Hang in there. How is Joe (and you) doing now?
We are atarting tests scheduled through the Cancer unit tomorrow. Still no appointment scheduled with oncologist nor any game plan at this stage. He is declining fast. Hope they take care of him. Myself, I can keep my mind busy most of the time. I will be with him to all of his appointment. Thanks for your concern. Greatly appreciated.
Hi @lisew, seeing your husband not being able to eat must be very worrisome for you. Have you had the appointment with his oncologist in the meantime? How are you doing?
Natalie, I'm so sorry you are in the middle of this storm. It's frightening to feel like you have no control. My husband was 55 in 2018 when he was first diagnosed. He was stage 4 at that time and wasn't a candidate for radiation or surgery. He did intensive chemo alone for 2.5 years and went into remission for 4 years, until a recent recurrence found last month on a surveillance endoscopy. They are trying radiation this time along with chemo for 6 weeks, starting Monday 4/29. I anticipate it will be rough but I still believe he will be okay! Financially it was hard, but our social worker at the cancer center found grants for us that helped immensely and at least took that worry away so we could put all our energy into getting him well, while not worrying about losing our house. You can read our story in my posts if you want.
This community has been so warm and welcoming, with many success stories and lots of support from people who've walked in your shoes. Please keep posting to keep us up to date. Try to take baby steps going through this. One day at a time as they say. I'm a spiritual person and that has kept me going, especially now as we begin this journey again. Celebrate little "wins" as they come, because they will! I'll pray for you and your family! My husband worked at an assisted living facility where the residents started prayer groups and made afghans for him. So many people we didn't know offered support and encouragement, and I believe that helped us immensely. Please take care of yourself as well. You are probably feeling overwhelmed, that's okay and understandable. Sending you positive vibes and hope ❤️
Lynn
Your husband journey gives me hope. My husband hasn't eaten since October 2023. After the 2nd endoscopy, they finally found the carcinoma. Awaiting Oncologist appointment. Hope he can eat at some point.
He wants treatments but the Dr's say he is not able to walk (lymphedema) in legs or strong enough. Has to be able to stand and get in wheelchair. There is no way this can happen. He could not walk before the cancer! Apparently, different rules at cancer centers and by state?
Why is he living without any treatments? Doesn't believe in them?
Natalie, I am so very sorry to hear. My husband started not being able to keep anything down. He went to the doctor and they scheduled an Upper GI and Colonoscopy and we didn’t make it. That morning at 4 am I witnessed him having a stroke. I told him that something was wrong with him and that if he wanted to have his upper G.I. they needed to go to the ER first we went into the emergency room at the time all the tests that they ran said there was nothing wrong with him and I’m like there’s no way there is something wrong. I think he had a stroke and the longer we waited. They started doing other tests. He had a stroke. He had a heart attack. They admitted him to the hospital the next day they did an upper G.I., which they couldn’t put him to sleep because if they put you under anesthesia after you have had a stroke, you will never wake up so they did that and as they were doing that they did an internal ultrasound of his heart. And they found a large esophageal tumor he was then medevac to encourage it’s our big city in our state and they didn’t know what they were gonna do with them because they were waiting for the biopsies of his tumor so they starved him for a week they weren’t giving him water he got to chew on. Some ice finally gets the biopsy back and it is was cancer. They did a pet scan, and it came back stage four lung’s kidney outlining that holds everything inside your body was riddled with a huge tumor on his esophagus one on his spleen, and he had gastritis They did a pet scan, and it came back stage four lung’s kidney. The lining that holds everything inside your body was riddled with a huge tumor on his esophagus one on his spleen, and he had gastritis. He has been getting chemotherapy every two weeks since a week after he was admitted to the hospital he’s very tired. We did a follow up pet scan and it is showing that his lymph nodes are starting to respond to the chemo so we’re going to continue. This is really hard to watch so I understand how scared you are because doll so am I I am turn 50 this year and we have always talked about when we’re old and I told him but I wanted to go first because I don’t think I could live without him and I just cannot picture it, so I wanted to let you know I am adding your husband to my prayers. I will pray for healing hands from the doctors and that you will find some peace.
Sending love to you.❤️
Is there an update on your husband?
My brother is stage 4, in hospital now. Has lived longer than expected without chemo or radiation.