Just found out today Mom has Stage 4 esophageal cancer im lost

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I am an only child and about a month ago my mother was having stomache issues and she figures it was related to her acid reflux. After 2 weeks of testing they determined she had esophageal cancer. It has gone down hill every single day since. Im so lost and dont know whee to turn. I live a long distance from her and have been drving to the hospital every day this week to be with her. today they put in her feeding tube and thats when they told me im sorry its stage 4. It happened so fast and i dont know how to feel or act I just want some all knowing being to come and give me instructions on what to do, but I feel so alone. Since she had surgery the dr hasnt even told her yet in fear she would hurt the surgery she just had if she was crying heavilly. I felt so guilty leaving her but I had to come home to take care of my children that have been crying for me to come home for a week. im so lost and feel so alone.

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  • Unknown
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  • fredswilma
    fredswilma Member Posts: 185
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    Dear you,I am so sorry that
    Dear you
    I am so sorry that you have found your mum to be so ill, Stage 4 to be honest is not so good, there will be lots of tears can I suggest you get a second opinion, really important, with a second opinion you can move forward. Stage 4 as you may not know yet means that the cancer has moved into other major organs and the chances of long term survival are slim, sorry to be so brutal, my husband has been stage 4 since August 2010
    , he is doing ok, what i have learnt along the way is to try to get in front of this cancer, in other words do your research, make your Mums journey as stress free as possible so she can enjoy what time she has left. Stage 4 means palliative care, which again means ensuring that her time with you and her grandchildren, she is able to enjoy, again question which treatments they want to put your mum on, there are times that the care is worse than the cancer itself. The best advice I can give you is this, tell your Mum everything that is in your heart, do not leave any words unspoken, do not feel guilty for coming home to your children, your Mum is also a Mum and would not have it any other way, stay strong, there are far more wise people that will reply to your post, but believe me when I say you are not along and my prayers and thoughts are with you.
    Ann
  • MomhasStage4EC
    MomhasStage4EC Member Posts: 39
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    unknown said:

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    Very fast
    Well those are a lot of questions. Mom has suffered from acid reflux for atleast ten years. She was using a prescription for her acid reflux and then it stopped working about a month and a half ago. She went to the Dr and they starting doing many tests about 3 weeks ago. She within a week was unable to swallow at all. So the dr put her on liquid medicine and a liquid diet and did more tests which gave of a conclusion of a large mass where the esophagaus meets the stomache testing was done and determined it was cancer. Fast forward About 6 or so days ago she stopped being able to swallow anything without bringing it back up this went on for 2 days before she was then admitted to get nutrition back into her system and get her hydrated. They were unable to get blood from her anymore so they put in a port in about a day and then a blood Transfussion for anemia and additional medicine was given for an infection in the bladder. Drs decided she needed a feeding tube. The feeding tube is the surgery I am referring to which took place yesterday. In the mean time all previous tests were being evaluated which included a biopsy(of the mass and a few lmphnodes) a ct scan x-rays and a pet scan along with many other tests. They were still putting all these tests together when she was admitted. She was actually admitted the hour after her pet scan at the Cancer Center which is attached to the hospital where she is now staying. After her ct scan yesterday morning they told us the results of the pet scan and said it was in majority of lymphnodes surrounding the esophagaus and in the adrenal gland and possibly also in her shoulder area. More tests were scheduled. As well as markings made for her radiation scheduled for next week. Once the Ct Scan and markings were done she was immediatly sent to the OR for her feeding tube. Once they were in there, since it would be put into her intestine region instead of stomache in hopes of future surgery to remove mass, they saw what was really going on in her abdomen and the prognosis quickly turned to the worst scenerio I didnt even imagine. She was determined inopperable and they will proceed with Palliable Care. Excuse my many mispellings as I just learned about all of these things in the last 3 weeks. So im just going from memory and have never even seen these words in writing before. She has been oxygen on and off a couple times a day. They determined the only areas they could confirm didnt have the cancer was the liver and kidneys. Before I could even understand what all this meant the dr said it was stage 4. They have since informed her of her prognosis and stage. I dont have all the answers yet on which part of stage 4 it is and what exactly that means. But I just want to improve her quality of life right now and pray for the best.
  • MomhasStage4EC
    MomhasStage4EC Member Posts: 39
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    Very fast
    Well those are a lot of questions. Mom has suffered from acid reflux for atleast ten years. She was using a prescription for her acid reflux and then it stopped working about a month and a half ago. She went to the Dr and they starting doing many tests about 3 weeks ago. She within a week was unable to swallow at all. So the dr put her on liquid medicine and a liquid diet and did more tests which gave of a conclusion of a large mass where the esophagaus meets the stomache testing was done and determined it was cancer. Fast forward About 6 or so days ago she stopped being able to swallow anything without bringing it back up this went on for 2 days before she was then admitted to get nutrition back into her system and get her hydrated. They were unable to get blood from her anymore so they put in a port in about a day and then a blood Transfussion for anemia and additional medicine was given for an infection in the bladder. Drs decided she needed a feeding tube. The feeding tube is the surgery I am referring to which took place yesterday. In the mean time all previous tests were being evaluated which included a biopsy(of the mass and a few lmphnodes) a ct scan x-rays and a pet scan along with many other tests. They were still putting all these tests together when she was admitted. She was actually admitted the hour after her pet scan at the Cancer Center which is attached to the hospital where she is now staying. After her ct scan yesterday morning they told us the results of the pet scan and said it was in majority of lymphnodes surrounding the esophagaus and in the adrenal gland and possibly also in her shoulder area. More tests were scheduled. As well as markings made for her radiation scheduled for next week. Once the Ct Scan and markings were done she was immediatly sent to the OR for her feeding tube. Once they were in there, since it would be put into her intestine region instead of stomache in hopes of future surgery to remove mass, they saw what was really going on in her abdomen and the prognosis quickly turned to the worst scenerio I didnt even imagine. She was determined inopperable and they will proceed with Palliable Care. Excuse my many mispellings as I just learned about all of these things in the last 3 weeks. So im just going from memory and have never even seen these words in writing before. She has been oxygen on and off a couple times a day. They determined the only areas they could confirm didnt have the cancer was the liver and kidneys. Before I could even understand what all this meant the dr said it was stage 4. They have since informed her of her prognosis and stage. I dont have all the answers yet on which part of stage 4 it is and what exactly that means. But I just want to improve her quality of life right now and pray for the best.

    a side note
    I forgot the mention the support system. I do have a small group of people who will help. She has a sister a brother and her life partner. My step father passed away 15 years ago. And my father has never been in the picture. My children are not babies but they are not adults either one is in Grade school and the other in Middle school. Her mothe is still around as well but on the older side not in a position to really help in a physical way but more in a emotional way. Even with this support system it was hard being in a room alone with a Dr telling you this news. Everyone was at work and I was there alone and sobbing waiting for them to be available to hear this news which I was responsible for telling since I was the only one my mother had given permission to speak with. We have since added a few other members of the family to the list in case of my absence or her partners absence. I will do my best not to cry anymore 24 hours of crying I think was the time alowable by GOD and now I have to be strong and educate myself and my mother on every possible thing.
  • MomhasStage4EC
    MomhasStage4EC Member Posts: 39
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    a side note
    I forgot the mention the support system. I do have a small group of people who will help. She has a sister a brother and her life partner. My step father passed away 15 years ago. And my father has never been in the picture. My children are not babies but they are not adults either one is in Grade school and the other in Middle school. Her mothe is still around as well but on the older side not in a position to really help in a physical way but more in a emotional way. Even with this support system it was hard being in a room alone with a Dr telling you this news. Everyone was at work and I was there alone and sobbing waiting for them to be available to hear this news which I was responsible for telling since I was the only one my mother had given permission to speak with. We have since added a few other members of the family to the list in case of my absence or her partners absence. I will do my best not to cry anymore 24 hours of crying I think was the time alowable by GOD and now I have to be strong and educate myself and my mother on every possible thing.

    Age
    She is 51
  • cher76
    cher76 Member Posts: 292
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    Age
    She is 51

    Welcome
    Welcome to our site. I am sorry for the circumstances that have brought you here, but know that this is a great place to learn about those circumstances. My husband was diagnosed with stage IV Esophageal cancer in October of 2010. He was 54 years old. He was having trouble swallowing, had been having some pain in the abdomen, and was losing weight. When he finally went to the doctor, an endoscopy and CT exam were scheduled for three days later. When the doctor came to talk to us after the endoscopy he told us he thought it was cancer and he had "never seen anything like it before". The esophagus was covered with tumors for 20 centimeters. It looked like a corroded pipe. As we drove the 3blocks to the CT scan I cried the whole way, and continued to cry when we went inside. As we filled out the insurance papers tears were streaming down my face and I cried softly in the waiting room the whole time he was having the CT exam. I cried and I prayed and I kept asking myself how did this happen. My husband was healthy, active, and never sick. And during that time waiting, I decided that we were going to fight this as best we could. Before we even got the official results back from the tests we got on the computer and self referred to MD Anderson in Houston, as we live in the very southern tip of Texas and this was the closest large cancer center. So, I understand completely how devastating this diagnosis can be. Next month we will have been married 35 years, we have been together twice as long as we were apart. The world as I knew it changed completely that day. I had just retired from 33years of teaching, our kids were grown and on their own, and we were finally going to do all those "one of these days" things. My world stopped on a dime that day and all I wanted to do was crawl back into bed and wake up from this terrible dream. Being an educator I have always known knowledge is power, so after my cry, I sat down and was determined to educate myself. I looked up everything I could find on the Internet about this cancer and read until late into the night for days. By the time we headed to Houston a week later I had familiarized myself with terms and treatments and info about drugs and side effects. As my husband started chemo and continued to lose weight, I got on the Internet and stumbled upon this site while looking for information on ways to get more calories into him when he could barely swallow. It has been a great resource ever since. He has had 3 rounds of chemo, with good results on this last round, and is feeling fairly well all things considered. Since we own our own family business, our son has taken over the day to day operations, and that has allowed Rickie to stay home and concentrate on being well. He stays active by working in the yard, has been helping clear out clutter in the house and garage, and helps me babysit our granddaughters occasionally. Our days are filled with doctor appointments, chemo, and tube feedings, as well as finding things to cook that he can swallow. We know that his condition is inoperable and incurable, so we pray for time. Time to share with our families, time to enjoy each other, and time for new advances in the treatment of this monstrous disease. As long as he continues to tolerate the chemo well, we will continue to fight. We got the feeling that the doctors did not expect him to be around this long and we know that prayers being offered up for him are the reason he is still here. Please tell your mother to stay strong and not give up. I will keep her in my prayers, as well as you. Being a caregiver is a special task that has been given to us. Remember, you can do all things through He who strengenths you! Feel free to email me if you want to talk or have any questions.
    Cheryl
  • TerryV
    TerryV Member Posts: 887
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    Positive thoughts your direction
    I recall how floored I was by the EC diagnosis for my husband. Please know that you have friends here. Others that know and understand your pain, your confusion, and even your anger about the EC.
    Praying for the best for your family.
  • Manf88
    Manf88 Member Posts: 20
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    I understand
    I live far from my dad and he too was recently diagnosed. Get comfort with other family members and friends to whom are like family to you. Make the time you spend with her awesome. Just being there is the best thing you can do. I have a daughter and it is difficult leaving her. Can you take them with you? I am sure your mom would love to see them. I have only been on this site for a few hours and I feel comfort knowing my thoughts and feelings are validated by others' experiences. Prayers and positive thoughts to you!