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.

Colleen Young, Connect Director | @colleenyoung | Aug 4, 2024

In reply to @gburdette "My husband was diagnosed July 24 with stage 3 EC any advice is appreciated. I am..." + (show)

@gburdette, what treatment is being recommended for your husband? How are you doing?

gburdette | @gburdette | Jul 28, 2024

My husband was diagnosed July 24 with stage 3 EC any advice is appreciated. I am pray for you and your husband.

gburdette | @gburdette | Jul 28, 2024

In reply to @lcasry "Praying for your husband for complete healing. I also have ec it is a terrible journey..." + (show)

Praying 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 🙏🏻🙏🏻🙏🏻

Colleen Young, Connect Director | @colleenyoung | May 16, 2024

In reply to @lisew "We are atarting tests scheduled through the Cancer unit tomorrow. Still no appointment scheduled with oncologist..." + (show)

Thinking of you, @lisew

stever1 | @stever1 | May 10, 2024

I'm crying reading your post. So sorry. the beginning is the toughest. Hang in there. How is Joe (and you) doing now?

lisew | @lisew | May 5, 2024

In reply to @colleenyoung "Hi @lisew, seeing your husband not being able to eat must be very worrisome for you...." + (show)

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.

Colleen Young, Connect Director | @colleenyoung | May 5, 2024

In reply to @lisew "Your husband journey gives me hope. My husband hasn't eaten since October 2023. After the 2nd..." + (show)

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?

Lynn | @cometsmom | Apr 27, 2024

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

lisew | @lisew | Apr 26, 2024

In reply to @pj03 "OK, this is the beginning of your journey together through this. My husband and I just..." + (show)

@pj03

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

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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.

desi27(Illinois) | @desi27 | Apr 18, 2024

In reply to @mrgvw "Why is he living without any treatments? Doesn't believe in them?" + (show)

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?