My husband diagnosed 4 weeks ago -Esophageal Cancer- HELP

OMG your story sounds almost identical to mine and my husbands! Diff is my husbands is stage 4 esophageal cancer and has metastised to his stomach. Dr gave him less than a year to live, but I don't accept that. This is his second battle with a serious, rare cancer. He had brain cancer 15 years ago so he's a fighter. I'm on FMLA intermittant leave from work, and I've had the social worker at his oncologist office print out cancer rescources for financial grants which have helped alot. Also if he has stage 4, and I know you don't want to know and that's ok I didn't either you can apply for Social Security disabilty and have an answer in 30 days or less. My husbands got approved, however 1st payment takes a long time, but they will back date. His Dr office can tell the Social Security office his stage, you need not know. It is an emotional roller coaster. Some days I feel so lost and hopeless, and others I'm at peace. Some days I'm affraid to go to sleep. I came to this sight looking for success stories just grasping for hope. I hope and pray we both have happy outcomes for our husbands.

OK, this is the beginning of your journey together through this. My husband and I just went through this and now my husband is cancer free and doing very well. Last April 2023 he was diagnosed with very similar cancer like your husband. His was a stage three, which I believe that would be your husband stage, with a 7.8 cm tumor , adenocarcinoma, at the distal third of his esophagus. Within seven days of that diagnosis by the gastroenterologist, he took my husband in to put a PEG tube in him. That saved him a lot because he had lost so much weight. My husband also ate only the soft foods that he could swallow because everything else got stuck or he couldn’t swallow anymore, he would have to vomit it up because it would sit right on top of his blockage from the tumor. When it got worse, we got him on homecare for tube feedings with a pump. He was so glad to have the pump give him 50 cc an hour of tube feeding because he was tired of pushing it in 4 to 6 times a day.
He also started the radiation simultaneously within 3 to 4 weeks of his peg tube placement. He actually felt fine ( piece of cake he would say) throughout this therapy in the first four weeks. The last two weeks I saw him plummet. He looked terrible, felt terrible, became nauseated, and did vomit occasionally. He aged in looks tremendously. Hair fell out and what was left turned into white peach fuzz. The Lord kept him through it all though. . He would have times where he had to lay flat for his radiation And would stop it in the middle to get up and throw up. But he made it through the sixth week finally. It took about two more weeks of “resting from the therapy “. He got dehydrated and I took him in three times a week for IV fluids in his Mediport at the cancer center to help him not get dehydrated. He would put water in his peg tube as well to make sure he got some fluids. It just wasn’t enough because he would get tired and nauseated. This was all done at home and I, being a nurse, could do it for him when he wasn’t feeling strong enough to give him his feedings. Otherwise, when he was strong enough, he did it himself.
Everything started to get better, and he felt much better after that, and recovered enough and prepped for his esophagectomy which would have taken place four months after his original diagnosis. During the preop test, a cardiac stress, test and angiogram was done and found that he had five blocked heart vessels. He’s only 57 at the time and had no symptoms! But I know the Lord took him through that, because if he didn’t have that done, he would’ve died having the esophagectomy. So two days after that angiogram, he had a quadruple bypass. This was all done at UCLA. Medical Center a Phenomenal place for their skill and expertise. After seven weeks of recovery and being able to walk 4 miles a day surprisingly, he was ready for his esophagectomy. That was an 11 hour surgery, but very successful. It was harder for him to recover from this one than the bypass surgery. But he did have two major surgeries back to back. All the cancer was removed and 16 cm of his esophagus was removed,. His PET scan was negative just 2 weeks ago.!! They are so impressed with how well he has done. He has maintained his weight, although 35 pounds lighter than before his cancer. He is working out at the gym and or walking 5 to 7 days a week and gaining stamina and feeling good. Walking about 2 to 3 miles a day. He is eating every two hours like he should, small meals, mostly high protein, and no added sugars or wasted calories. He’s being very strict on himself and doing a good job of it. Cancer free is the biggest celebration for us. No tubes no lines no ports.!
I had FMLA so that I wouldn’t lose my job at the hospital but I did not get paid FMLA because the California EDD denied my claim and would not answer the phone when I called approximately 100 times over a two month span. One time they answered and said they didn’t have the paperwork that I sent in “certified mail”. I resent it online like they asked and then they would never answer the phone again from me again. I lost over a months wage and I sent everything in that I was asked to. Everything is paid up and paid off finally, which is great because we had really good insurance and because, frankly, the Lord took care of every detail. We had our whole church, praying. And I will pray for you both.
Journal everything if you can. Every day how he is feeling and doing. But phone calls you make to advocate for every appointment. Remember to call for any cancellations to expedite appointments if you can. From the time he was being seen for symptoms in March 2023 to his surgery on September 28 of 2023, I prayed for expedited appointment so that he wouldn’t have to linger and wait around for their appointments. Every doctors appointment or test, you can call each morning between eight and nine and see if there’s been any cancellations that week and get your husband in sooner. I would say 80% of the time that worked for us.
This is a journey for sure! Normal everything including numbers and the names of people you talk to in each office so that you can get a clear picture of what you’ve done and reference for everything if you need it later. You need your friends and you need prayer from those that will walk alongside you through the journey. My husband‘s cancer is gone and I give God all the glory for that. The doctors are calling it a miracle for him what he’s been through. I pray the same for you your husband! ❤️🙏
Blessings, Patti

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.

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.

Why is he living without any treatments? Doesn't believe in them?

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?

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.

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

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?

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.