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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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My husband had esophageal cancer in 2013. Treated at the Mayo in Rochester. Then 67. Had chemo & radiation & the surgery to remove esophagus & pull up stomach. Successful surgery. Lost almost 20 pounds. Feeding tube for a few days. Eating & swallowing successfully almost immediately after. Eating continued as normal. Cancer free. Also dealing with heart damage & a past heart attack. One day at a time. Full trust in the Mayo Clinic!
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3 ReactionsHi @emersonmoon I thought I’d check in. Any update on the stage and treatment plan? How are YOU doing?
Natalie, I am also a wife scared shitless. PET scan today for what appears to be an aggressive cancer with lymph node involvement on his EUS
You are a few months ahead of us.
I think this blog is a wonderful resource, and I feel better when I read all the stories. The bad ones help me see what might happen, but most people pull through and continue to fight. If you ever need to talk, message me. It might help both of us. I know it would me.
@cmmacy1949, what a helpful and hopeful post.
Was the damage to your husband's heart caused by esophageal cancer treatment? Is he followed by cardio-oncology at Mayo Clinic?
My hubby and I had a good visit with the oncologist this past Wednesday. He was encouraging and said he believes this to be curable. We have a PET scan scheduled for the 28th (it was the earliest appointment available) and then he needs to see the surgical oncologist. Praying for a good PET scan result; I’m stressed that we couldn’t get one sooner. They seem to be moving in the direction of surgery, provided the scan is favorable for that. Then probably chemo/radiation. The roller coaster ride of emotions is tough!
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3 ReactionsNice Doctor.
Hello, my mother (88 years old) was just diagnosed with oesophagus cancer (siewert classification type II) she has trouble swallowing and can only eat soft or liquid food. She has pain in her chest area. Waiting for referral to get a CAT scan to find out if it has spread. The GI doctor didn't tell me much just to wait until the scan to get more information. She is barely eating and only a few spoonfuls.
I would appreciate any information to help me navigate this journey with her.
Thank you
Celi
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2 ReactionsI was diagnosed at 46 with esophageal cancer that has constricted in two places, I was given a PEG tube for feeding protein/nutritional shakes, it is a direct access to the stomach. I am now 47, it has been nearly a year since diagnosis. It can be a chore feeding by tube but you are able to get the proper nutrition and feeding required to maintain weight. I have a hard time keeping up with it as I fluctuate with being able to eat appropriately sized meals by mouth, but when I have trouble eating I use it and attempt to fill my stomach with the formula.
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2 ReactionsI suppose I would tell you that at 88, there's not much that can be done for your mom. But that's not true... because I don't yet know what stage she is, what type of EC she has, the location of her solid esophageal tumor, mom's other comorbidities... and most importantly... what kind of shape mom is in. But here's my take...
In general, most of us EC patients (like me) are usually diagnosed once we become symptomatic (difficulty swallowing typically). This usually means we are stage 3 or 4, typically with adenocarcinoma down towards the GEJunction. I could be wrong, but if this is true, it means she must begin chemotherapy and/or radiation, and/or immunotherapy, very soon (weeks). Will mom be able to handle these treatments... possibly having a port installed... and even a feeding tube (j tube or g tube)? Maybe. Her doctors will be advising. But clearly, this cancer will progress... it won't stop on its own. It will win.
If treatments were to happen, and she had a very nice response... this might gain her another 6 months to two years even. And that would be just fine... before needing hospice care. Because the next step after a great response to first-line treatments is the esophagectomy... which is long and tough surgery... not meant for an 88 year old. I would strongly advise against this... should it even become a possibility. But only her thoracic surgeon, and anesthesiologist, would weigh in on this... depending on what shape she's in at age 88.
But even then, I could be wrong. I talked to one surgeon who did an esophagectomy on a 90 year-old. I did not find out more details. And we have two patients on our Zoom calls who recently had esophagectomies... one is 83, and one is 81. The biggest problem with this brutal surgery is not just the surgery... and recovery from your surgical wounds. The problem is the long road back to proper digestion. I was 61 when I went thru it all... damn tough. A crazy ride... a bit of misery to go thru, both physically and mentally. At 66, I'm pretty much back to normal... I actually eat, poop, and sleep, pretty much normally these days. I admit I am shocked at where I'm at. At 6 months post-op... I was not doing well... a bit depressed.
Ok... let's find out where mom is, and go from there. I'll come privately as well.
Gary,
Southern California
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1 ReactionHello Gary,
Took her to the hospital today because she was in a lot of pain and could not swallow water. Did a ct scan and noticed that the cancer has spread to other organs . They also found a blood clot in her lung . Doctor said that’d still need to run more test because we don’t know what type of cancer or stage it’s at. Should be speaking with an oncologist tomorrow to get more information.
My mom has diabetes and high blood pressure. Physically she is pretty strong and has a very good attitude given the situation she is in.
I greatly appreciate your time and feedback.
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