Mom has been diagnosed with Esophageal Cancer
I am looking for any information/tips and especially inspiration. My mom (age 54) for the past three months my mom has been having trouble swallowing her food (she said it felt like food was getting trapped in chest area). She went for a scope last Tuesday (June 8/10). The doctor told her that he found a mass and that he is 99.9% certain that it is cancer.
We are now waiting for the results of the biopsy and the CT Scan. We are praying that the cancer is in the early stages.
This waiting game is driving my family and I crazy. We are just so sad & scared.
Any info/advice would be greatly appreciated.
Thanks,
Jeff
Comments
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Sorry to hear about your mom
I'm sorry to hear about your mom. My husband was diagnosed in Feb. 2010, so I am still new. You will be hearing from some of the more experienced here and find a wealth of knowledge from them. They really are a God send.
The best advice I can give you right now is that your mom eats if she can. If she has trouble with solids the ensure, carnation instant breakfast, boost. They are good. She will need a lot of nutrition later in her treatments, so starting now can give her a head start. Dont pay attention to the statistics. Find a positive doctor. Having a good attitude is a big part of the battle. And it IS a battle, but a battle that can be won. Your mom and her caregivers will be scared, confused and feel like you just got on the biggest rollar coaster ride you have ever seen. Put your seat belts on because you can do this.
Come to this site often and ask any questions you need to. Read other peoples stories, because you will learn a lot.There is no such thing as a dumb question or a bad feeling here, so vent if you need to.
Take care
Nancy0 -
Welcome
Hi Jeff
Welcome to you are your mom. Sorry you have to be here, but you have found the right place. There are many many survivors here. There are many helpful experienced people here. We are here for you day and night. I was a caregiver for my dad, he lost his battle with ec in March. He beat the ec, but it spread to his liver. Take this one day at a time, one test at a time, try not to look too far ahead. If it is in early stages, great, if not, it can still be treated. In early stages they will treat it to shrink it, and then perform surgery to remove it. First concentrate on the staging. Best of luck to you. We will be praying for you. Keep us posted.
Tina0 -
Your Mom's recent diagnosis
Dear Jeff, So sorry to hear about your Mom's diagnosis. Every person on this site has either faced the diagnosis or cared for someone who has ec. I'm relatively new to this site, but from my very first visit, I was impressed with the information and support provided. I've often turned to it during the treatment and surgery of my husband for information and support. For supposedly a "rare" cancer, there sure are a lot of people who experience it. Seems like whenever I mention my husband's diagnosis, someone always says they have a parent, sibling, relative or neighbor who had the very same thing. I feel like it's under diagnosed. The newest and more optimistic information is just beginning to reach the internet. The medical field is doing great things. Stay away from the gloomy websites. The information is dated and just makes you feel bad. There is an organization called Esophageal Cancer Awareness Association that also has information. Their newsletter is called "Swallow Tales," which I think is a great play on words. It is most important that you believe in your treatment team; that they are responsive to your family; efficient and very timely in getting things started. Be informed and stay on top of appointments, seeing that they are promptly scheduled and results promptly reported. Ask when you can know results. If your Mom needs a J-tube, get one and learn how to care for it. I was totally at a loss when my husband got his. It became his best friend, although aggravating at times, but kept his weight up so that he could have his surgery. He is now cancer free and is learning how to deal with eating, etc. Much patience is required because the treatments and surgery are demanding. We decided to tell our friends of the diagnosis via email updates. This helped keep them informed and prayerful. They didn't have to ask what was going on. Believe it or not, except when he was in the hospital, he continued to work a little each day. It was hard on him but it kept him looking to the future. We pray for your Mom and for all the other wonderful people who have had to or are encountering this frightful diagnosis for the first time. Hang in there!0 -
This comment has been removed by the ModeratorBMGky said:Your Mom's recent diagnosis
Dear Jeff, So sorry to hear about your Mom's diagnosis. Every person on this site has either faced the diagnosis or cared for someone who has ec. I'm relatively new to this site, but from my very first visit, I was impressed with the information and support provided. I've often turned to it during the treatment and surgery of my husband for information and support. For supposedly a "rare" cancer, there sure are a lot of people who experience it. Seems like whenever I mention my husband's diagnosis, someone always says they have a parent, sibling, relative or neighbor who had the very same thing. I feel like it's under diagnosed. The newest and more optimistic information is just beginning to reach the internet. The medical field is doing great things. Stay away from the gloomy websites. The information is dated and just makes you feel bad. There is an organization called Esophageal Cancer Awareness Association that also has information. Their newsletter is called "Swallow Tales," which I think is a great play on words. It is most important that you believe in your treatment team; that they are responsive to your family; efficient and very timely in getting things started. Be informed and stay on top of appointments, seeing that they are promptly scheduled and results promptly reported. Ask when you can know results. If your Mom needs a J-tube, get one and learn how to care for it. I was totally at a loss when my husband got his. It became his best friend, although aggravating at times, but kept his weight up so that he could have his surgery. He is now cancer free and is learning how to deal with eating, etc. Much patience is required because the treatments and surgery are demanding. We decided to tell our friends of the diagnosis via email updates. This helped keep them informed and prayerful. They didn't have to ask what was going on. Believe it or not, except when he was in the hospital, he continued to work a little each day. It was hard on him but it kept him looking to the future. We pray for your Mom and for all the other wonderful people who have had to or are encountering this frightful diagnosis for the first time. Hang in there!0 -
Hi Jeff, I am glad you found us
Hi Jeff, I am glad you found us! I am a daughter, my dad is battling EC right now--long story, but doing fairly well (but thinner!) 8 1/2 months or so since diagnosis. Since my dad was initially diagnosed in a very small town, it seems maybe your mom was too? A long time survivor on this site, might see your post and ask some of these questions that I have, but: Where are you guys? Will they do an endo scopic Ultra Sound? That is the scope that goes down the throat, but is specialized because it also has Ultra sound (kind of like what they use on pregnant mom's belly's to see the baby!). The reason this is important is that it can see more specifically where the EC is and how deep through the esophageal wall it might be. It also can tell about some of the lymph node involvement if any.
When was the biopsy and CT scan? How long have you been waiting? You may need to get specialized care. I was glad that my dad's young surgeon at a very small hospital (it even had a cancer center) in very far northern NY (near Cananda) recommended they go to to bigger hospital for further assessment and treatment for the best results. My parents chose to got to Duke Medical Center which was only 3 hours from where they usually live in the wintertime. You'll see many different places people here recommend. MD Anderson in Houston, Dr. Luteich in Pittsburg (correct me William on spelling & such!).
JEff--the worry & sad is so normal---don't worry---we have been and most are still there. Keep your head up and don't be discouraged. If you read statistics about EC, don't necessarily believe that your mom is on the grim side. She is relatively young---so see what the staging (level of progression) comes up as. Don't be afraid to get a second opinion. Don't let her or you all loose hope!!!! I am still scared for my dad---but at every step of the way, he fights it and is holding his own---he has had chem/radiation clinical trial, then surgery (mostly laproscopic) then follow up chemo. He is in his last round of chemo---follow up tests in a couple of weeks. We are so glad for every moment! You don't have to treat your mom like it's "her time", but go ahead and have fun, do things maybe you have hesitated to do before. We have found, that each moment is almost more special now, because we all appreciate it more---if that makes sense.
I pray for the best---ask lots of questions on this board if you want-someone her has probably had the same question or knows the answer--we are all in the same boat as you are. Sometimes, it seems the caregivers get more out of this board than the patients---so don't push you mom to look at it if she doesn't want to. (others may disagree with this???)
anyway---your on this journey now---and we are all here with you!
Kim0 -
Hello Jeff,
Our situations
Hello Jeff,
Our situations sound very similar. My mom (age 55) was diagnosed with stage IV EC the week of Thanksgiving 2009. This was after going in for an endoscopy and being told she had a large tumor that was as you said "99.9% cancer". Hers, in fact, was cancer. Thankfully she had no metastis to other organs, however, her tumor ran very deep. It was in her esophagus and trachea. She had vigorous chemo and radiation and ended up needing something called a stent. She now has four telescoping stents. Two in her trachea and two in her esophagus. The chemoradiation did it's job and her tumor has shrunk considerably. One doctor said he isn't even sure what they see is tumor. While this is all good, the decision was made that she would not be a candidate for future treatment. Her telescoping stents can cause many complications and they feel that paliative care is in her best interest right now.
I hope that your mother, if it does prove to be cancer, is staged early and that treatment is started quickly.
Take care,
Amy0 -
THANKS SO MUCH
Hi Everyone,
Thanks so much for your quick replies and info. It is nice to have a support group from people who know exactly how we are feeling.
My mom is good spirits. She is trying to go about her normal routine while we wait for the results. She even went to the gym on her way to work this morning.
The results from the CT Scan and Biopsy should be in sometime this week.
I will definately keep you all posted. You are an amazing group of people and I am so glad that I have found you (though I wish it wasn't under these circumstances for all of us).
I wish you and all of your family members the best in your fight.
Lets all keep fighting.
Jeff0 -
Jeffjrbholland said:THANKS SO MUCH
Hi Everyone,
Thanks so much for your quick replies and info. It is nice to have a support group from people who know exactly how we are feeling.
My mom is good spirits. She is trying to go about her normal routine while we wait for the results. She even went to the gym on her way to work this morning.
The results from the CT Scan and Biopsy should be in sometime this week.
I will definately keep you all posted. You are an amazing group of people and I am so glad that I have found you (though I wish it wasn't under these circumstances for all of us).
I wish you and all of your family members the best in your fight.
Lets all keep fighting.
Jeff
Hi Jeff,
I am so sorry to hear about your mom. I know how scary it is. My mother (46) is a tonsil cancer survivor of 6 years and has recently had trouble swallowing. I mainly know that lately the food/pill etc had been randomly getting "stuck" somewhere in her throat off and on for about 3 weeks. These moments of her choking are absolutely terrifying. She has dropped about 20 lbs in the last year, but I think it was due a lot to stress from other issues. I made her an appointment with the doc on Thursday, but I am calling her old oncologist tomorrow. I know it is still early, but could you tell me what symptoms your mom had? God bless and know you have so many people on this site praying for you and ready for an answer or encouragement whenever you need it.
Thanks
Dani0 -
SymptomsDLS5419 said:Jeff
Hi Jeff,
I am so sorry to hear about your mom. I know how scary it is. My mother (46) is a tonsil cancer survivor of 6 years and has recently had trouble swallowing. I mainly know that lately the food/pill etc had been randomly getting "stuck" somewhere in her throat off and on for about 3 weeks. These moments of her choking are absolutely terrifying. She has dropped about 20 lbs in the last year, but I think it was due a lot to stress from other issues. I made her an appointment with the doc on Thursday, but I am calling her old oncologist tomorrow. I know it is still early, but could you tell me what symptoms your mom had? God bless and know you have so many people on this site praying for you and ready for an answer or encouragement whenever you need it.
Thanks
Dani
Hi Dani,
I am so glad to hear that your mom got through the tonsil cancer. She must be a very strong woman.
My mom only had one symptom. Starting in February 2010 she had trouble swallowing meat and other coarse foods. She complained that it felt as though the food was getting stuck right near the bottom of her rib cage.
In May she visted her family doctor and he said that it was probably an ulcer or scarring of the esophagus. He also said that there was a small chance it could be cancer.
On June 8th she went for a scope and that is when they found the mass.
Even now she feels great (other than when she tries to eat).
We went to the doctor yesterday and they have confirmed that my mom does indeed have cancer (adenocarcinoma) half in her esophagus and half in her stomach.
The doctors are putting her on a treatment plan of Chemo & Radiation for approximately three to four months and then surgery in the Fall.
We are praying that she will get through this. The doctors seem pretty confident that they can treat her as the cancer has not spread to other organs or lymph-nodes.
Jeff0 -
Thanks for the Updatejrbholland said:Symptoms
Hi Dani,
I am so glad to hear that your mom got through the tonsil cancer. She must be a very strong woman.
My mom only had one symptom. Starting in February 2010 she had trouble swallowing meat and other coarse foods. She complained that it felt as though the food was getting stuck right near the bottom of her rib cage.
In May she visted her family doctor and he said that it was probably an ulcer or scarring of the esophagus. He also said that there was a small chance it could be cancer.
On June 8th she went for a scope and that is when they found the mass.
Even now she feels great (other than when she tries to eat).
We went to the doctor yesterday and they have confirmed that my mom does indeed have cancer (adenocarcinoma) half in her esophagus and half in her stomach.
The doctors are putting her on a treatment plan of Chemo & Radiation for approximately three to four months and then surgery in the Fall.
We are praying that she will get through this. The doctors seem pretty confident that they can treat her as the cancer has not spread to other organs or lymph-nodes.
Jeff
Hi Jeff
I was glad to read that you have gotten the results of your mom's biopsy and pet scan. That is the plan with ec. Have the chemo and radiation first to shrink the tumor, and then have the surgery to remove that part of the esophagus and stomach, and reattach her stomach to her throat. What stage is she at? You are about to begin a very long, bumpy, roller coaster ride with many ups and downs. Take this one day at a time. Do not think too far ahead of yourselves. Keep a positive mind set. You mind set is half of the battle. Tell her to keep going to the gym, the better shape she is in, the better off she will be, come time for surgery. As far as eating is concerned, tell her to eat only very small meals frequently throughout the day. Cut the meat into very small pieces, or blend them. Eat baby food. Drink instant breakfasts. Eat yogurt. Drink Ensure or Boost. I am sure the dr will be giving her a diet plan. Come here often, we are here for you. We will be praying for you.
Tina0 -
ThanksTina Blondek said:Thanks for the Update
Hi Jeff
I was glad to read that you have gotten the results of your mom's biopsy and pet scan. That is the plan with ec. Have the chemo and radiation first to shrink the tumor, and then have the surgery to remove that part of the esophagus and stomach, and reattach her stomach to her throat. What stage is she at? You are about to begin a very long, bumpy, roller coaster ride with many ups and downs. Take this one day at a time. Do not think too far ahead of yourselves. Keep a positive mind set. You mind set is half of the battle. Tell her to keep going to the gym, the better shape she is in, the better off she will be, come time for surgery. As far as eating is concerned, tell her to eat only very small meals frequently throughout the day. Cut the meat into very small pieces, or blend them. Eat baby food. Drink instant breakfasts. Eat yogurt. Drink Ensure or Boost. I am sure the dr will be giving her a diet plan. Come here often, we are here for you. We will be praying for you.
Tina
Hi Tina, our doctor said that he doesn't like to do staging at this time as not all of the tests are back (PET Scan etc.) However, he said that based on the biopsy and CT scan he doesn't see anything in the lymph nodes or other organs. Just the stomach and esophagus. He wasn't sure if the cancer started in the stomach and went to the esophagus or vice-versa.
Has anyone else had that issue where they have it in both stomach and esophagus?
He seemed confident that we have a fighting chance.
We are trying our best to be positive ! My mom is in pretty good spirits and I hope she stays that way. Though I am sure she will have some rough days ahead too.
Thanks again,
Jeff0 -
This comment has been removed by the Moderatorjrbholland said:Thanks
Hi Tina, our doctor said that he doesn't like to do staging at this time as not all of the tests are back (PET Scan etc.) However, he said that based on the biopsy and CT scan he doesn't see anything in the lymph nodes or other organs. Just the stomach and esophagus. He wasn't sure if the cancer started in the stomach and went to the esophagus or vice-versa.
Has anyone else had that issue where they have it in both stomach and esophagus?
He seemed confident that we have a fighting chance.
We are trying our best to be positive ! My mom is in pretty good spirits and I hope she stays that way. Though I am sure she will have some rough days ahead too.
Thanks again,
Jeff0
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