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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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First, I'm so sorry for what you and Joe are going through. It sounds like he's had a rough start to his journey with EC and it's understandable how that impacts you as well. I was diagnosed with Stage 3, locally advanced esophageal cancer in May . It blew me away. I haven't had as difficult of a time (no feeding tube, etc.) so I can't fully understand Joe's pain and challenges. If I can suggest a few things, I hope they might help. First, help yourself help him. If you're unable to be healthy, you can't be the caregiver you want to be. You don't mention your support group, but if you can, speak to friends and family and let them know the situation. Solicit and accept help to relieve your burden so it's easier to help Joe. Have them prepare some meals, help with chores and relieve some burden. They want to help. Use some of that extra time to do something strengthening for you. Regarding your medical discussions with your team, ask a lot of questions. You deserve to know things like staging, treatment options, side effects, etc. so you're informed and comfortable with his care. Each of our situations and battles are unique to each of us individually. His care should be also. When I was first diagnosed, I thought the worst was ahead. My medical team put together a specific attack plan which included chemo radiation followed by surgery in mid-October. The more I understand about my recovery process, the more comfort and confidence I have for a full recovery. I expect a rough road, but like Joe, I have a loving and supportive caregiver to help me through. Envision one year from now when Joe is healthy again. Between now and then will be a kaleidescope of challenges and emotions, but optimistically , a positive outcome. Your letter, by the way, helped me in my day to day fight too.
Best to you both, Geoff
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4 ReactionsIm in the same boat and yes it is scary. Hoping to get the surgery done. Ive had the feeding tube in for a month and do manuel feedings which I prefer. I got a good pill crusher when I was in the hospital so everything goes in the tube. While doing chemo and I feel too bloated I can cut back a bit. Will do my 2nd round of chemp in 2 days. So far so good. Best of Luck to you and your husband
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2 ReactionsIf he can tolerate Whey protein powder get what flavor he likes. The
Naked whey powder is good and has no taste you can put it in anything. Lots of calories and Protein.
My spouse had the surgery in early August. He has done extremely well. But am I still scared absolutely. But I'm not trolling the websites the medical ones all day anymore. I said it was my job. It's not much different than my job as a triage nurse/retired. But I say I have not had a day without worrying. It's normal but be kind to yourself. At times we need medical help to ease the rough edges. A good attitude is half the battle.
Take care
@deepdive1967, so glad you found help at Mayo Clinic. You were quite young when you were first diagnosed with esophageal cancer. What led to your diagnosis?
I know you weren't asking me... but on our Zoom call yesterday, I discovered a guy who was diagnosed with EC because he went in with hiccups that wouldn't go away. Don't see that every day. His esophagectomy was in 2001 as well! Crazy!
I went to the Dr about persistent nausea that I thought was due to a bad gall bladder. The Dr verified that my gall bladder was indeed bad but said that something was telling him to scope me to look for a ulser, this decision saved my life. During the endoscopy they found the early stage tumor and recommended that I go straight to surgery...3 weeks later I did. If I had it to do over again I would have slowed things down and studied my options but in that moment everything was a blur and I trusted the Drs here to my detriment.
I should have made the trip to Mayo for a second opinion and had them handle all surgeries and treatment.
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2 ReactionsWhat is it that you rue? How you were staged? Where you had your surgery? The outcome of your surgery? Not getting a second opinion? Not doing any treatments first?
I'm curious since I've talked to hundreds around America and the world about everything EC. And things are done a bit differently in other places... but then again, many things are the same. Hope you are well and coming along.
Gary,
Southern California
I was stage 0 when diagnosed, very early, that is why they recommended going straight to surgery. I had my surgery done at IU med center in Indianapolis 9/7/10 and was released 3 weeks later. During my time there I complained about not being able to breath and they daily took X-rays and said nothing was wrong. My thoracic surgeon was dismissive to my complaints and I was sent home, I was home a week when I was found passed out and rushed back with a punctured lung that was full of blood.
I had to have my entire Ivory/Lewis incision reopened to repair the lung and rewire the ribs back together. After this I suffered for 8 yrs, in and out of different hospitals around Indy, before finally going to the Mayo clinic.
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2 ReactionsUnbelievable. Almost criminal malpractice in my book. You should stop on our Zoom calls... so we can hear your incredible story in more detail. We do all we can to learn from our fellow EC patients. Next call is Wednesday at 6pm Eastern time.
Gary
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1 ReactionPlease send me the link and any instructions