Feb 04, 2013 - 7:16 pm
My name is Justina and I'm new to this site. My 55yo father was dx with Stage 3 EC 9/2012. We were told the tumor was 7.7cm and extended into the stomach. He has 2 enlarged lymphnodes and several small ones that have been affected but they say they consider all that localized. I had taken my father to the hospital in 1/2012 because he was complaining of difficulty swallowing food with increased pain as it would go down the esphogas into stomach. He also was having chest pains more in the center of his chest. He was admitted to the hospital and underwent several tests to determine if it was heart related. The cardiac doctor said heart looked clear so he called in a Gastro Consult. The Gastro doctor came in and looked in his throat with light and had my father swollow a solution of Mylanta and Lidocaine. FINALLY HE GOT SOME RELIEF!!! She then said it was acid reflux causing the pain because the acid was coming up from his stomach and he was discharged with Ranitidine and told to follow up with Cardiac doctor. We did the follow up in Feb. and was told that he had a blockage and that was what was probably causing his pain. Stent was placed and the pain seemed to decrease, he wasn't really having difficulty swallowing anymore.
Then came time to follow up with PCP. We told him what had happened and he said that with my father's obesity and hx of the pain with difficulty swallowing he wanted him to go to a Gastro doctor for scope. He thought maybe my dad had an ulcer and felt like he's at that age to be checked regardless. To this day I can't thank him enough, for really taking the time to listen. We were completely shocked, like most, when we were told it was cancer. Even his PCP was taken back for a moment, when I called him from the hospital it took him a few moments before he said anything.
Life has changed, drastically. My father has heart disease that was dx at age 47 and in my opinion that little heart of his is the strongest I've known, disease or no disease. He underwent surgery to place port, J tube for preperation of chemo/radiation, and the Thoracic Surgeon wanted to get a good look himself and do additional bx. We were sent home with no formal training on the J-tube and even then I felt like things were moving to fast. A technician came out to drop off the J-tube stand and did a 5 min. editorial on how to operate the machine. Even then when I asked specifics he said that he wasn't a nurse and that I would have to call the 1-800 number provided. So after about 2 days my father was saying that the feedings were really uncomfortable, causing him not to sleep since we hooked the machine up at night. I was confused on why we were already using it when he was still able to swallow soft foods. We were told that it was to help the nutrition since he wasn't taking enough daily by mouth. Back to the discomfort, I called that 1-800 number and explained the symptoms he was having and questioning the fact that maybe he was getting too much. She didn't know anymore than I did, so I ended up just calling the surgeons office. The Nurse Practioner called me back and said to stop the tube feetings since he was eating something by mouth and we would discuss it again when we came in for f/u, 2days away. Then the next day my father was acting strange, out of his head so I called the Nurse Practioner and he said that it could be too much pain medication, but that he would stay on the phone while I checked his temp. 101, heading back to hospital.
Arrived in ER, they took us immediatly. They said the J-tube area was infected and that the CT scan showed that there wasn't an abcess under the incision so my father was sent to a nursing home. I couldn't believe it, they said that he had to go there for monitoring of infection. There wasn't any type of monitoring being done there, I spent every day there arguing with the charge nurse and every night arguing with the night nurse about the poor care. Within a day of being there the incision started to look bad, but the in house doctor assured me that was normal and the antibiotic would clear it up. I think the moment I realized that I was going to have to be my fathers mouth piece(he calls me his Pit Bull-LOL) was when he called me at midnight and said a nurse came in to remove the bandage from the J-tube area and it was so painful he was crying then he said she covered it with gauze and hadn't been back since. 2 hours later he contacts me and says that it's really burning and draining down his side. I got in the car drove up and was beside myself. I took the gauze off myself and it was like open flesh, hamburger looking. I ran out into the hall, found the nurse and the nurse aide that bandaged it up and asked if they thought this looked normal. They responded no but they were going to call wound care in the am, I said you can call the ambulance now, we are out of here. They came and to make a long story short he was sepsis on arrival, had a form of an infection that even the CDC couldn't figure out. 2 additional weeks in hospital with surgery to remove J-tube and an open wound about the size of a grape fruit that couldn't be sutured because of infection. An abcess did form under the incision. They were really concerned about him being able to eat with chemo/radiation tx so they went ahead and placed a stent. That ended up placing a stent to make sure he would be able to eat during chemo/radiation.
All of that delayed the Chemo/radiation, we started 11/29, we were so nervous about the delay it had been 2 months since dx. He did really well, I think that helped boost his confidence. I was impressed myself, the blood counts and everything that goes along with that stayed in the range of ok because he finished tx with no breaks inbetween. He was able to eat little bites, but we were IV hydrating him at home. The port has really been a blessing. Even though he finished chemo/radiation, it has since caught up with him. He has lost a total of 76 lbs since September, but he is a fighter. He has no appetite but I'm good about sneaking nutrients in shakes that otherwise turn him off if he drinks them alone. We were told that he is not a good canidate for surgery given the hx I explained above. We were told that he might not be in the beginning before starting the chemo, but they said they would wait and see how he does during the chemo. They decided against it. I was very thankful that the wound healed on it's own even though he was under going Chemo the whole time.
I'm worried because it seems like everything I've read, especially on here that the majority of the people who are survivors have under gone the surgery. Does the chemo/radiation work alone? We are going for a pet scan at the end of Feb. , waiting for results is one of the worst parts of all of this. I do believe in miracles, but I'm not niave to the fact that EC survival isn't great.
I know this is going to be a lot to read, but I have to say this is the first time I've ever told this story from the beginning. Before this I had never really heard anything about EC, now that I'm going through this with my father, I would love to be a part of changing that. God bless all those that have been affected by EC.