Optimistic survivors of Stage 3 and 4 adenocarcinoma?
Comments
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Staying strong...hopefulsurvivor49 said:Stay strong
Dear Tina,
Your fitness will help you so much through recovery from surgery. It sounds from what I read on your profile that you have squamous EC (not adeno -- different parts of the esophagus, different tissue, different treatments, prognosis, etc.), so I don't know anything about what to expect from your upcoming surgery, but I do know that being otherwise fit and strong will help you recover. Are you happy with your surgeon and doctors?
I am happy to hear you are staying strong and positive -- both are so important to treatment and recovery.
Blessings to you.
I do have adenocarcinoma, but I also have a complex condition because my Aorta is wrapped around the back of my esophagus and attaches to my heart on the opposite side from normal anatomy. I don't smoke, I did not have any of the typical symptoms: reflux, indigestion, swallowing issues. The MIE surgery is not an option, because my cancer is located in the upper esophagus near the trachea, heart, major vessel area. I have a very experienced Dr. Reisner at Cancer Treatment Centers of America. Three surgeons will be in the OR during surgery, I will be in good hands. I still feel strong, next week will be a new world.
I'm hopeful to be patient with recovery, I will be able to speak again eventually, not the same way, but it can be done. I will use an electrical device to speak right after surgery, then three months after surgery they will place and implant to help with speaking.
Thanks for the well wishes...will continue to stay in touch.
Tina0 -
Wowmabailey48 said:Lots of hope!
I was a 52 year old male in seemingly perfect health in early 2004 when I went in for a routine checkup and admitted to having trouble swallowing breakfast every day. I was diagnosed with stage 4 adenocarcinoma. My tumor was as big as both fists together and I had widespread lymph node involvement. They told me it was too late for anything but palliative treatment but we continued looking for a clinical trial that would accept me.
We got into the Winship institute at Emory U in Atlanta and after 6 weekly chemo cycles and the max radiation I could take, the surgeon said he would give it a try. I had radical surgery in March of 2004. My weight bottomed out at 140 (down from 220). But slowly I began to be able to swallow and every day I got a little stronger.
It has been 8 years now and I'm as strong as a horse again. My weight is 170. My diet is not limited in any way except for volume. I eat about 6 times a day. I still have occasional dumping and rare vomiting but other than that I'm good as new.
Statistics are just that. No one knows who will survive and who won't. My advice to you is simple: do not fear dominate you. Concentrate on others, not yourself. Smile and have fun as if you were never sick. Have courage. If it seems to be killing you, look the cancer square in the eye and tell it, you may kill my body but you can't kill me. My soul, my personality, my individuality is indestructible. If you go out, go out like a warrior. Make people remember you as a happy warrior who never gave up, never complained, and never blamed God. Don't be angry, be brave. You can beat this.
mabailey48,
What a wonderful and upliftin story. Thank you for sharing it, and for the pep talk. I am so inspired by you and the others I have "met" on this site.0 -
It's so great to revisit
It's so great to revisit this site and reread the success stories. Sometimes I get incredibly sad wondering how much time I have left with my mother but when I read posts like these, it gives me hope again even though it's a bit smaller than it was 5 months ago. Thanks to everyone for resharing your success stories.0 -
Stage 4 survivor here
I had my treatment (chemo, radiation, and radical surgery) in Q1 of 2004. The first two years after were a struggle but things have gotten steadily better since 2007. The quality of life issues (constant vomiting, inability to eat much, enduring pain when you do eat too much, unpredictable dumping of the digestive system) do improve over time. Be patient and try not to get preoccupied worrying about yourself. Try visiting your old treatment locale and visiting with strangers with cancer. Anything to shift your focus from you to others. Good luck!0 -
Thank youmabailey48 said:Lots of hope!
I was a 52 year old male in seemingly perfect health in early 2004 when I went in for a routine checkup and admitted to having trouble swallowing breakfast every day. I was diagnosed with stage 4 adenocarcinoma. My tumor was as big as both fists together and I had widespread lymph node involvement. They told me it was too late for anything but palliative treatment but we continued looking for a clinical trial that would accept me.
We got into the Winship institute at Emory U in Atlanta and after 6 weekly chemo cycles and the max radiation I could take, the surgeon said he would give it a try. I had radical surgery in March of 2004. My weight bottomed out at 140 (down from 220). But slowly I began to be able to swallow and every day I got a little stronger.
It has been 8 years now and I'm as strong as a horse again. My weight is 170. My diet is not limited in any way except for volume. I eat about 6 times a day. I still have occasional dumping and rare vomiting but other than that I'm good as new.
Statistics are just that. No one knows who will survive and who won't. My advice to you is simple: do not fear dominate you. Concentrate on others, not yourself. Smile and have fun as if you were never sick. Have courage. If it seems to be killing you, look the cancer square in the eye and tell it, you may kill my body but you can't kill me. My soul, my personality, my individuality is indestructible. If you go out, go out like a warrior. Make people remember you as a happy warrior who never gave up, never complained, and never blamed God. Don't be angry, be brave. You can beat this.
I signed up today for this site after my father was given the news this morning that at 55, he likely has stage IV EC. He has not had a PET Scan yet, but based on a CT Scan that showed 2 lymph nodes enlarged in his abdomen the oncologist said that it was Stage IV and he would receive palliative treatment only. My father and my family were stunned; he developed symptoms 1 month ago and prior to that was a healthy guy. We were told there was no hope for cure and no hope for remission, that he would need chemo every month until he died. Reading your story has given me hope; we are not quitters and plan to fight this. I am glad to read about others who have faced this with such strength and had positive outcomes. I shared your story with my father, and he was moved as well. Thank you!0 -
This comment has been removed by the ModeratorJDO said:Thank you
I signed up today for this site after my father was given the news this morning that at 55, he likely has stage IV EC. He has not had a PET Scan yet, but based on a CT Scan that showed 2 lymph nodes enlarged in his abdomen the oncologist said that it was Stage IV and he would receive palliative treatment only. My father and my family were stunned; he developed symptoms 1 month ago and prior to that was a healthy guy. We were told there was no hope for cure and no hope for remission, that he would need chemo every month until he died. Reading your story has given me hope; we are not quitters and plan to fight this. I am glad to read about others who have faced this with such strength and had positive outcomes. I shared your story with my father, and he was moved as well. Thank you!0 -
Hey Hopeful...
You have every reason to be. Just reading through all the responses you got was quite inspiring, so thanks for getting the ball rolling. I too was diagnosed a stage three. Went through 6 weeks of chemo/radiation followed by an en bloc esophagectomy. This is the type where they take out a bunch of lymph nodes too. Anyway, I am close to celebrating my three year post surgery mark and life is great. I'm feeling better, have learned how to eat better, and overall just enjoying life. This thing can be beaten, people do it every day. One at a time. All the best!
Kirk
T3N1M0
6weeks chemo/rad
enbloc esophagectomy 7/09
Dr Tom DeMeester USC0 -
Kirk --nickgunboat said:Hey Hopeful...
You have every reason to be. Just reading through all the responses you got was quite inspiring, so thanks for getting the ball rolling. I too was diagnosed a stage three. Went through 6 weeks of chemo/radiation followed by an en bloc esophagectomy. This is the type where they take out a bunch of lymph nodes too. Anyway, I am close to celebrating my three year post surgery mark and life is great. I'm feeling better, have learned how to eat better, and overall just enjoying life. This thing can be beaten, people do it every day. One at a time. All the best!
Kirk
T3N1M0
6weeks chemo/rad
enbloc esophagectomy 7/09
Dr Tom DeMeester USC
Thank you for your
Kirk --
Thank you for your post! I haven't been online in a while, and I was so happy to see your post, and so grateful to hear your positive story.
-- Margaret0 -
My Mom
Hello,
My Mom was diagnosed in late November 2011. She had 6 weeks of chemo/rads followed by THE surgery in early April. She is almost 2 months past the surgery. She is doing well now and her "pep" is finally returning. She's eating most things, and learning what not to eat (mainly fresh citrus is tough on her). She's finally smiling and laughing again. It's a pleasure to see her like this after what seemed to be a dark cold winter. Her next scan isn't until September, for now she is cancer free and enjoying her second chance.0 -
can we share the info?
I have EC right at distal juction and protrude to my stomo... I am still struggling sending u the private inbox but i dont mind discussing with you about this... I start Cisplatin and 5FU last week and radiation for 5 weeks and 5 days in a row sound similar to yours and but a lil different case... I wud appreciate if we share the info. So u're an avid runner and I am deaf but I teach at public school not at the deaf school and i can speak and sign language as well... but I love to do cardio and weight room because I am PE teacher and Health education as well as coaching HS football and baseball and was coaching wrestling in past... however, I accept that I have EGC and wud like to have your feed back... Looking forward to hear fromyou and have a happy day!0 -
Hi Coach,Coach B said:can we share the info?
I have EC right at distal juction and protrude to my stomo... I am still struggling sending u the private inbox but i dont mind discussing with you about this... I start Cisplatin and 5FU last week and radiation for 5 weeks and 5 days in a row sound similar to yours and but a lil different case... I wud appreciate if we share the info. So u're an avid runner and I am deaf but I teach at public school not at the deaf school and i can speak and sign language as well... but I love to do cardio and weight room because I am PE teacher and Health education as well as coaching HS football and baseball and was coaching wrestling in past... however, I accept that I have EGC and wud like to have your feed back... Looking forward to hear fromyou and have a happy day!
I am happy to hear
Hi Coach,
I am happy to hear from you and share any helpful information I can with you as you start your journey through treatment and to being cancer-free. It does sound like a similar diagnosis. Can I ask where you are being treated, and what your EC was staged at?
By the time I was diagnosed, I had a tumor well into the esophagus wall, and the cancer had spread to some lymph nodes. I was Stage 3, and was told that the goal would be to get through the chemo and radiation, shrink the tumor and nodes, and be a candidate for minimally invasive surgery (esophajectomy). That was one year ago. I had the surgery last September, and although I will be honest, it was tough, and my quality of life is not as good as it was, I am grateful and happy to be on this Earth still with my family.
So, my advice: stay positive. One of my best friends, a gastroenterologist who helped diagnose my cancer, kept telling me, it's a low survival rate, but somebody has to be in the survivor percentage, and it might as well be you! There is research showing that a positive mental attitude helps, so keep telling yourself that you are becoming cancer free every day with treatment.
I would lie on the radiation table every day and close my eyes and visualize the light energy taking the cancer cells out of my body. Try it. It's very calming.
Rest as much as you can. I could not believe how incredibly exhausted I was every afternoon after radiation. I asked why, and the doctor told me that our bodies are working very hard to heal from the radiation. This takes a lot of calories and a lot of energy. I had to nap every afternoon, and I was fortunate enough to be in a position to do that.
Take the anti-nausea meds you are given. Don't try to be tough. They help. Stay ahead of the nausea.
Every time you have an appointment, if possible, take someone with you to take notes. You will be tired and your head will be spinning from information overload. I kept a notebook and had my husband or friends write down what the doctors told me. I also logged my questions in there.
If you have the energy to do light weight lifting, ask your doctor if it's O.K. for you. Honestly, I found that I had very little energy. You are lucky to be fit pre-cancer. That will help your recovery immensely. Also, you will find it easier than most to get active again post-cancer. It took me months after my surgery, but I am now able to do water fitness classes and walk briskly, weight training and spin. Recently, I was able to alternate walking and running on a treadmill. I still don't feel up to running, and I'll never be able to take in enough calories to run more than a few miles, but it feels great to be getting my fitness level back. You will get there.
More advice: ask for help. Accept help when offered. Your friends, co-workers and loved ones want to help you. It is a blessing for both sides. You will need help, and they will feel great to be able to give it.
Finally, if you have a faith, rely on it. Pray, meditate, whatever works for you. I could not have maintained my strength and attitude without God's help.
I hope this helps. Please feel free to reply to this, although I don't get the chance to check the site every day. Here is my personal email of you feel more comfortable writing to me there, or if you need urgent answers from someone who has been there: mcrouse-skelly@comcast.net.
Monday I have my next round of CT scans. I am realistically anxious, but optimistically hopeful they will be clean!
Best to you--
Margaret0 -
margaret, Good luck on yourhopefulsurvivor49 said:Hi Coach,
I am happy to hear
Hi Coach,
I am happy to hear from you and share any helpful information I can with you as you start your journey through treatment and to being cancer-free. It does sound like a similar diagnosis. Can I ask where you are being treated, and what your EC was staged at?
By the time I was diagnosed, I had a tumor well into the esophagus wall, and the cancer had spread to some lymph nodes. I was Stage 3, and was told that the goal would be to get through the chemo and radiation, shrink the tumor and nodes, and be a candidate for minimally invasive surgery (esophajectomy). That was one year ago. I had the surgery last September, and although I will be honest, it was tough, and my quality of life is not as good as it was, I am grateful and happy to be on this Earth still with my family.
So, my advice: stay positive. One of my best friends, a gastroenterologist who helped diagnose my cancer, kept telling me, it's a low survival rate, but somebody has to be in the survivor percentage, and it might as well be you! There is research showing that a positive mental attitude helps, so keep telling yourself that you are becoming cancer free every day with treatment.
I would lie on the radiation table every day and close my eyes and visualize the light energy taking the cancer cells out of my body. Try it. It's very calming.
Rest as much as you can. I could not believe how incredibly exhausted I was every afternoon after radiation. I asked why, and the doctor told me that our bodies are working very hard to heal from the radiation. This takes a lot of calories and a lot of energy. I had to nap every afternoon, and I was fortunate enough to be in a position to do that.
Take the anti-nausea meds you are given. Don't try to be tough. They help. Stay ahead of the nausea.
Every time you have an appointment, if possible, take someone with you to take notes. You will be tired and your head will be spinning from information overload. I kept a notebook and had my husband or friends write down what the doctors told me. I also logged my questions in there.
If you have the energy to do light weight lifting, ask your doctor if it's O.K. for you. Honestly, I found that I had very little energy. You are lucky to be fit pre-cancer. That will help your recovery immensely. Also, you will find it easier than most to get active again post-cancer. It took me months after my surgery, but I am now able to do water fitness classes and walk briskly, weight training and spin. Recently, I was able to alternate walking and running on a treadmill. I still don't feel up to running, and I'll never be able to take in enough calories to run more than a few miles, but it feels great to be getting my fitness level back. You will get there.
More advice: ask for help. Accept help when offered. Your friends, co-workers and loved ones want to help you. It is a blessing for both sides. You will need help, and they will feel great to be able to give it.
Finally, if you have a faith, rely on it. Pray, meditate, whatever works for you. I could not have maintained my strength and attitude without God's help.
I hope this helps. Please feel free to reply to this, although I don't get the chance to check the site every day. Here is my personal email of you feel more comfortable writing to me there, or if you need urgent answers from someone who has been there: mcrouse-skelly@comcast.net.
Monday I have my next round of CT scans. I am realistically anxious, but optimistically hopeful they will be clean!
Best to you--
Margaret
margaret, Good luck on your scan. Let us know results so we can celebrate with you,
Sandra0
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