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Stage 4 Esophageal Cancer Found in multiple lymph nodes and Liver

jessmona
Posts: 1
Joined: Feb 2012

My Dad was diagnosed with Stage 4 Esophageal cancer on January 12, 2012 after having his 2nd EGD performed; however the 1st EGD was performed a year earlier in 2010. This showed an erosion. We were not properly informed that an erosion could turn cancerous....the doctor only suggested meds to help with my dad's symptoms which at the time was weight loss and lack of appetite. I questioned the doctor about the instructions and asked if an erosion could cause these symptoms and was told most definitely it could cause such symptoms....not informing us to keep a close eye on this and have it checked monthly or that it could turn to cancer. My poor dad was misinformed and given a medication that would mask his symptoms for up to a year until he started having some difficulty with his initial swallowing at the start of the day and some uncomfortable stomach pains.

The same doctor that misinformed us now acted as if he were on top of the situation when he found the erosion had now turned to a tumor. I will not mention his name, but do not plan on ever returning to this Johnstown doctor again. He then referred us onto the Hillman Cancer Center located in Shadyside (Pittsburgh) the very next day which was January 13, 2012. We were originally scheduled to see Dr. Luketich, but ended up seeing an assoicate Dr. Schende. We were told at that time that she felt by looking at the pictures of the EGD showing the esophageal tumor and hearing my dad's history that this was caught in time and that we should prepare for surgery known as the esophagectomy; however, my dad had to go through several tests before that could be determined. The series of tests took up the next two weeks. We then had a follow up appointment with Dr. Schende to review the findings which turned into our 2nd worst nightmare! Qur first nightmare was three years ago when my mom was diagnosed with Colon cancer which had spread to her liver. She ended up getting surgery that was to save her life, but ultimately took her life after 4 months in the hospital. We all had struggled with the idea of my dad going through such a serious surgery that may have numerous complications. However, that day we were told he wasn't a candidate for surgery as he was already in Stage 4 esophageal cancer and that it had spread to the lymph nodes in the chest and to the liver. On this day we had the appointment at the McGhee Women's Hospital and then were sent directly to the Hillman Cancer Center to see an Oncologist about starting Chemo....it was a lot to take in, in just a couple hours. We met with a Dr. Orh who didn't give us a very good first impression, but instructed us that he would need to be scheduled for a port and to start chemo shortly after. The Chemo treatment plan is to be once every 3 weeks for up to 9 weeks and then to follow up with a CT/Pet Scan to see how the tumors are reacting. My dad was also given a chemo pill that he would have to take directly after the chemo treatments 2 times a day which equals over 2000 mg per day...this pill has numerous side effects too as the chemo does. He did have one chemo treatment so far and has done well with it not having too many side effects. He goes for his second one this week and the doctors have already prepared us that this next one may knock him down some. We are hoping he does as well as the first.
If anyone has any advice or information to help us all get through this....I would greatly appreciate any and all input. Thanks in advance as we continue to plan on fighting this horrible disease!

cher76's picture
cher76
Posts: 302
Joined: Nov 2010

This is a place where you will gets lots of helpful info as well as the most wonderful support and understanding from others who are going or have been through the same thing as you. I lost my husband of 35 years to this beast, EC, on January 4 th of this year. He was diagnosed in Oct. 2010 as stage IV after having difficulty swallowing and weight loss. He fought for 15 months with everything he had, all the while knowing that there would be no cure, only hoping for more time to spend with our family. He lived much longer than any of his doctors expected, a fact I attribute to his sheer determination and will to live along with the many prayers offered in his name. While God cannot take away all the illnesses that befall us, he can grant us small blessings along the way, and we had many.
My advice to you is to be your father's best advocate. If you don't like the way something is going, say so. If you don't feel right about what the doctor tells you, get a second opinion. Don't take no for an answer. Don't worry about what the doctor will say if you go elsewhere, you have to be comfortable and confident with who you are seeing, the treatment plan, etc. Read all you can about this disease, as knowledge is power. Many times when dealing with local doctors I felt like I knew much more about this disease than they did. They are not dealing with it day in and day out as a caretaker or as the patient, so they cannot begin to know the things you and your dad will know.
If your dad is losing weight, start asking for a feeding tube. There are several kinds, and many reasons for each. My husband had what is called a PFG (percutaneous fluoroscopic gastronomy ) feeding tube which as placed at MD Anderson. I don' t know that anyone here on the board has had this type of feeding tube, but for us it was great. Many will say you should not have a feeding tube into the stomach, but into the intestine. My husband was not going to have surgery, so his stomach did not have to be preserved for that. The procedure was done using X-ray and light sedation, took about 30 minutes, and we were learning how to use it an hour after insertion, and on our way home within two hours. It used a very small gauge tubing that only stuck out from his belly about 5 inches and was not visible under his shirt. He could even swim with it! He never had any problem with nausea, so putting formula into his stomach was not a problem. Going into the stomach also did away with worries about "dumping" and clogging was not an issue.
When only used it when it became difficult for food and or liquids to pass through his esophagus. The last 3 weeks of his life we used is solely .
These are a few things you need to know. I know others will come on and tell you more. Please don't hesitate to ask questions. If you don't want to ask it publicly, you can privately message us through the site. Know we are all praying for your dad and you on this journey.
Cheryl
Wife of Rickie, dx stage IV EC Oct. 2010
Mets to bones and brain
Deceased Jan. 4, 2012

cher76's picture
cher76
Posts: 302
Joined: Nov 2010

I understand what you mean about not being informed about erosion. It irritates me to hear the commercials for reflux medication that only say reflux can "damage" your esophagus. They never use the "C word"! People just don 't realize how serious that "damage" can be. REFLUX CAUSES CANCER!

bunchofstaceys
Posts: 6
Joined: Feb 2012

Hi,
My Dad was also diagnosed with stage 4 that was already spread to liver, nymph nodes, and kidney. He was diagnosed on Oct. 28, 2011. He was admitted to the hospital for sever dyhydration and had a port and feeding tube in by the next day. One week later he started chemo and went on a trial. After 8 wks he had another scan and the cancer had shrank by 50 percent. Daddy still was not able to swallow solids and had alot of really bad side effects. By now he had lost about 70 lbs. Just last week he started feeling more tired and just feeling down. We went last wk for another scan and the cancer had started growing again. So doctors changed chemo and took him off research trail. He seems to feel alittle better today. He even drove himself to his favorite fishing hole yesterday. It was really nice weather. We go every wk now for new chemo. Only advice I can give you is everyone is different. So everyone will react different to everything. No matter how much research you do or how many questions you may want to ask, I dont think anyone can tell you what you really want to hear. I just know this. I love my Daddy very much. And I'm gonna enjoy all the time I got left with him and not let this cancer consume us. Only God has the last word and Its him I seem to talk to the most, even more here lately. My Daddy is 67, I am an only child but I am married with four children on my own. I don't know if I can be of any help to you but if you have any questions I would be glad to try.

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

First, let me say how very sorry I am. This is an especially ugly cancer and apparently a very aggressive cancer.

I can only echo what Cheryl and Bunchofstacey's have already said. You have been blessed to find this site - I have relied on the support of all the members and each and everyone of them have been more than supportive. We have several stage iv's on this site - so you will have great support and information from them.

Cheryl is so very right - if you feel like something is not right, please, please question it. I have several times, and our doctors welcomed the questions and the opportunity to explain the answers.

Please let us know if you have any questions. We are here to support you and your dad as much as we possibly can.

Hugs,
Judy
wife of Don
T3N1M0
chemo and radiation started 1-4-11
surgery scheduled 3-22-2012

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

My husband was diagnosed in June 2011 with Stage IV EC (some distant lymph nodes affected.) He was on a similar regimen to your Dad: IV Oxaliplatin on Day 1/ Xeloda Days 1-14/ 1 week rest/ then repeat. He had good results with the only side effects being fatigue and cold sensitivity that is a given with Oxaliplatin. I would just stress drinking plenty of fluids (24-36 oz a day at least.) On chemo, once you get dehydrated, it is almost impossible to catch up without an IV. Also, we faithfully did saline mouth rinses 3x daily and never had problems with mouth sores. And lotion on face and feet is a good idea. Hope this helps. Sending prayers and good wishes for great quality of life and enjoying each day!
Angie

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