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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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I 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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1 ReactionShe is stage 4... I can tell you that much. With spread to organs, that much is obvious. Still... no one knows how she will respond to chemo and immunotherapy treatments. But they must start very quickly! Yes... not looking good... but up to mom if she'd like to give chemo a go. It's going to be rough. Otherwise it's quickly time to make her comfortable... with pain meds and a way to feed herself and hydrate herself.
My husband was diagnosed in December of 2023. His food was getting caught in his throat and he would have trouble getting it back out or down. He had a scope test showing the cancer at the base of his esophagus. After that he lived off of broth type soups and drinks like Ensure. He had to do this for a couple of months since it took a month before he started his chemo treatments. He lost weight but the chemo helped shrink the tumor. Eventually he could have soft food and then regular food. It takes time but it did get better.
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1 Reaction@celidelriop, any further update about the type and stage of cancer? How is your mom doing? How are YOU doing?
@cottonsunflower, how is your husband now? Has he finished treatments?
Hi. Stay strong. I found that 100ml per hour with the feeding tube was too much. Made me feel sick and severe abdominal pain. I reduced it to 60 but then had to have it going longer. Yes I lost a lot of weight but that's always going to happen. If he can try to have the pump going at night that's really helpful. Also putting extra calories through it during the day. It kind of takes over your life but it's not forever.
He will sleep a lot however if he can manage small walks then that's great .
He's lucky to have you, I know that without my husband advocating for me I probably wouldn't be here. It's ok to cry too, we've cried buckets during the last 2 years.
This support group is amazing, so many knowledgeable folks. I have learned so much since joining.
All the best Sue
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4 ReactionsMy dad was diagnosed a few weeks ago and curious how your husband is doing?
He's doing well, currently 9 months out from the end of his treatment and all CT scans and endoscopies since then show no evidence of disease. Praying he doesn't have another recurrence as all that is left for him is more chemo. He couldn't have the surgery because of cardiac problems and then he was found to be stage 4 anyway which took surgery off the table anyhow. Wishing for the best outcome for your dad ❤️, and for you. Never give up hope!