My partner has had surgery and doing absolutely brilliant he never watches Internet...he is eating normally...and living his life...I'm so proud of him.
I had a diagnosis of established Stage2. Figured I owed it to my then 7yr old son to do all I could to not have his memory of his Dad being sad… Took the 5 weeks of daily Mon-Fri Radio & weekly followed by 10hr upper/end of Ivor Lewis oesaphagectomy. The operation may or may not have been necessary and was a Big One. First three weeks in particular was by far the worst phase of the whole journey since diagnosis. Gradually MUCH improved and I’m 100% pleased to have gone for it - I owe it to my family to be happy for the inconvenience to have given them a 20% better survival rate. My biopsy is 100% clear. Bless the NHS here in the U.K. ❤
My father had this type of cancer back in 1988, he had the surgery, the the year following with him ultimately passing, was horrific, his quality of life due to the surgery alone was tremendously diminished. Fast forward to 2015 my brother in laws mom had the same cancer, same Tx plan with same out come. It absolutely dumbfounded me that in 30 years and the technology available had not progressed and that the surgery was just a violent some 30 years later. I have just recently been diagnosed with Barrett's Esophagus, and I'll be having 2 surgeries to correct it. We can do much better!!!
So... what ablation treatments were tried on you. And yes, no doubt treatments (chemotherapy and immunotherapy and radiation) have changed since 1988. And how esophagectomies are done have changed greatly as well. But still... the odds of Barrett's actually turning into EC... still very small statistically speaking (unless most cells show high grade dysplasia).
@@gvwing Hello, on November 7th, 2023, my son was diagnosed with stage 4 esophageal cancer with liver metastasis, a few weeks later we found he also had thyroid cancer. We were told he only had six months to live. He was in a lot of pain and was unable to eat solid or semi solid food , only liquid diet but due to his liver tumor, he had really bad nausea and he vomited even the liquid he drank, he lost more than 50lbs. On December 14th he had a procedure done called cryotherapy to shrink and kill his esophagus cancerous tumors followed by immunotherapy and chemotherapy in January and he’s doing a lot better, now he’s able to eat and has gained a few pounds and also is pain free. It’s been already six months since his diagnosis and he seems to be doing better every day even though doctors say his cancer is terminal. I have to mention that he started taking supplements from a product called 4Life which has 4 different types of mushrooms and a juice made of Apple, Purple Grape, Blueberry, Açaí , Pomegranate, and Elderberry fruit juice, I firmly believe these supplements kept him alive when he wasn’t able to eat or keep liquids down, amazingly, he was able to keep down this juice and the capsules most of the time. I also gave him homemade beet, carrot and red apple juice without the pulp made with a masticating juicer. His oncologist said he probably had anemia and wouldn’t be able to receive chemo and immunotherapy but to her surprise, his hemoglobin was good enough to receive treatment. In two weeks he will have a PET scan done to check if his cancer has stopped spreading 🙏🏼.
I am now 73 years old, had the surgery 26 months ago. Recovery was HARD but slowly got better over the 26 months. I am always grateful that I had the surgery, despite the challenges it involves. It definitely changed my eating (4-6 small amounts), sometimes have motility issues, sometimes GERD and infrequently aspiration BUT, I am alive, with my family, exceecising 6 - 7 days a week! No regrets.
I'm opting for quality of life over the length of life. I'm in the first stages of cancer did chemo & radiation pet scan shows I'm clear of cancer. I'm opting for follow up exams and if it returns doing whatever treatments are available then. Im 60 yrs old at the moment.
My husband listened to his Dr. re his stage 4 esophageal cancer, and I wish we didn’t !! We actually thought he had a chance, NO and the last year of his tortured nightmare of a life was constant drs appointments , treatments surgeries procedures, so that extra time was for dr appointments ,........
This surgery was brutal! I’m two months post op and I can only eat about a cup of food at a time. If I overeat, I get excruciating pain. I just found out that it has spread to my bones. I regret having the surgery.
I live in Melbourne Australia. I had an Ivor Lewis procedure on Oct. 29, 2009, I was 80 years old I am now 91 and in good health. I can eat normal time meals, only half the size as I used to. Before the operation I weighed 74 Kilos, I now am steady on 67 Kilos. I am grateful to the surgeon and his team for these years and the future they have given me. Anyone who refuses to take the opportunity given them should rethink. Charles.
@@ksdad2two I had private health cover when I had surgery, and still have. My son 69 years old has just been diagnosed with same cancer plus further complications. He has no private insurance but the public health system is treating him with excellent attention and little delay. I heard Trump say that America had the best health system in the world. Australia could show him a real public health system. Our private system covers whatever you specify, ex. hip replacements etc. straight away, but the uninsured have to go on a long waiting list for free treatment. We are the lucky country. Charles.
Hi Charles, you have given me much heart. I was operated on 2 months ago using the same operating procedure. They have me on inmunotherapy now as the cancer got into my lymph nodes - my surgeon assured me though he managed to cut out all the cancer after having chemo and radiotherapy. How long did it take you to regain full fitness because I would love to go back to work but find that I am still quite fatigued and light headed most of the time. Also were you really weak and sore afterwards because I am still unable to lift heavy objects or even mow the lawn. I am eating fine though which is a great positive and I am roughly the same weight as yourself now, whilst being somewhat overweight to begin with. I was 76 kilos a year ago and now I am 63 kgs. All the best.
@@ksdad2two Yes, we are extremely fortunate that a fraction of our gross wages goes to a safety net so we may all access healthcare when we need it, including myself.
I had an Ivor Lewis procedure 13 months ago. I have been in misery ever since. My doctor and surgeons in Atlanta failed to inform me of the quality of life after being operated on. Severe weight loss, always on the edge of exhaustion. Almost nightly I asperate in my sleep. Have to constantly have to nibble food. If I eat a somewhat normal meal its a 50/50 chance I'll end up with dumping symdrome. I still have to take reglan, and a med for nausea . With the least amount of work I cramp up so severely I have to stop and rest. I can't matain my weight much less gain any to feel better. I'm 63 yr old, if I'd have been informed that they were other options, I may have made a different dicision. This has been the most miserable 13 months a human could suffer. Now my pet scans are showing abnormal uptake at g.i. junction where i had operation done to remove my esopphigus and most my stomach. After being told I was now cancer free.
I am really sorry to hear. It's been 3 months since my op. I managed to start the lawn mower today and mowed the nature strip, out the front of my house. That is a huge win. I ate rump steak the other night. Felt like it was getting caught. I will stick to mince meat or lamb cutlets. I can only manage entre size or smaller portions of food, but I am eating normally, not just soup. I am feeling constantly light headed and fatigued. My surgeon did say it will be atleast 18 months before I will be normal in the meantime I am undertaking immunotherapy - nivolomab, which if I have any dairy product gives me the runs. It's fun stuff, but atleast I am here, writing this, otherwise, well you know the althernative. Keep the faith brother.
I had an esophagectomy. The first recovery year afterwards was hell. I had severe GERD attacks with stomach acid like battery acid during these episodes I panicked every time. It was mandatory sleeping inclined to avoid acid attacks. I had 4 inches removed including the valve that keeps the stomach contents from coming back up. I am now in my 9th year after I was told I had 4-6 months to live. I am cancer free now. If you catch this early enough you should choose the operation because this death thing is so hard on your loved ones. I still suffer to this day but I have more control over it every year. My life now includes stool softeners, nausea medicine and acid reducers but when I see my three boys faces I realize it was worth it. I will be 66 this year.
How you doing, its been about the same time for myself after having surgery using the Ivor Lewis method. Huge win today, managed to mow the lawn. You have to take the small wins, like the first time you eat steak. I'm on a course of immunotherapy at the minute, once a fortnight, to ward off any return of the beast. I wish I could go back to work, but I feel fatigued and light headed most of the day.
That was all a bit... odd. I mean, who woulda thunk that not having a surgery that should be done leads to a worse outcome? Did you need a study for that? Seriously? 🤔 Then they've been wondering why people refuse, the answer being, "We don't know"-well, I hate to state the obvious, but how about you like, ASK them? 🙈 I mean, I'd do that if I was selling popsicles at Walmart for 50¢ a piece and people refused to buy them, should be a no-brainer when it comes to potentially life-saving treatments. At this point, I can't even make up my mind if they were interested professionally or out of fear of potential unemployment. In the end, all you can do is say, "Look, we need to cut that stuff out, or you're gonna be dead in a year or two", and the patient will either nod or refuse, easy as that. On a side note, my mother suffered from esophageal cancer, and they tore her open 6 or 7 times from all sides (minimally invasive wasn't even a thing back then) and left her in a state of unbearable pain and misery, softened only through shots of morphine all around the clock until she finally died (nope, fentanyl patches weren't a thing back then, either). So, the horror stories on the Internet may just be worth reading after all, and I can't blame anyone for noping out of that show. My heart goes out to everyone suffering from this hideous cancer.
Surgery is a big money maker. That's why doctors are so eager to do surgery. My father underwent surgery and radiation for laryngeal cancer. He only lived 1 year after treatment.
I had the Ivor Lewis. I was told not even half of what will or could happen to me. I was told to get my affairs in order. I was so overwhelmed. Don't read to much, don't worry, we'll take care of you. Basically, one is a warm body. If you fit the requirements for surgery and got medical insurance, you're golden...plus everybody can have a go at you. Believe you me, I know. After the surgery, I had the feeling, they were done with me. That's it, twice a year check up $$$$. They did what they wanted, now you go figure out your new body and why nothing is working anymore. Of course getting sick was all my fault. I remember a nurse telling me, if you don't sign this form, breathing will become more and more difficult, checking her watch. That was so wrong , but I was unable to get away. All this was similar to watching a horror movie and realizing you're not watching, you're in it. This is a $150 billion industry, will they find a cure?
My brother was just told this week that he has this cancer They will not perform surgery We are all so much in a state of wandering There seams to be no hope he can not eat the cancer they said has spread This I think is what hell must be like
My mom was the same, they denied her surgery. I took her to all the best hospitals UCSF, Davis, Stanford....none would operate on her. That was basically her death sentence. She had amazing medical insurance. She passed 1 year and 1 day from diagnosis. I am sorry. Yes, it is hell and I am glad that she is not suffering anymore, but I miss her everyday. She never got to meet her grandchildren.
Had my surgery a month ago was frightened but felt it was my best chance after watching every video on the subject i could find. Eating is much better i seem to have no limit on what i can eat the amount i can eat is also very good unless i really push the envelope i dont have any issues i can vacuum, mow grass, do stairs etc. If the cancer spreads to other organs they wont do the surgery mine took 8 hrs to complete had 1 complication after the surgery so far a plueral effusion because they have to collapse your lung to do the procedure i had fluid build up between my chest wall and lung making me short of breath because my lung couldnt expand all the way due to the fluid but went back to hospital and they put a small chest tube back in to drain it and now its doing much better and i can breath properly again. Im 44 years old and still recovering but so far given the chance id make the same decision to go forward with surgery i was stage 3 with lymph node involvement T3N2
Yo how are you doing now? I'm 30 and going through chemo and radiation now. Stage 3 with lymph involvement as well. I'm still on the fence about the surgery. Would love your opinion
@xConnnnorrrr of course. I was on the folfox with Oxiplatin I went to infusion center and 3 hrs or so there and then have to take home the pump for 46 hrs. After that came off the sick would come for 3-4 days and the stinging from drinking anything cold or having cold air touch me was brutal so drink like room temp things. I had to do 4 rounds of that. The radiation i did I think 25 appointments and that was uneventful until the end. They will tell you your esophagus will feel like it's badly sunburned on the inside of your throat and it may swell nearly closed again until it heals which is very uncomfortable. I ate freeze pops and chicken broth during this time. *** This part is very important*** when you finish your chemo and radiation you will have a pet scan to make sure there is no spread of cancer which will determine if you can have the surgery or not when I had my pet scan my liver lit up and I was told I was not able to proceed with the surgery but that he wanted to biopsy to be sure. I had the liver biopsy and it came back negative for cancer so the doctor did a diagnostic laproscopy surgery where he goes in with a camera and looks around and there was no cancer on my liver so my surgery was reinstated my doctor said my liver lit up on the scan due to inflammation from the radiation still being present. As far as the surgery went no way around it I was absolutely terrified the younger you are the better you do because your body heals better mine was robotic and took 8 hrs I wasn't in a great deal of pain after waking up of course they had me on meds but I was aware and they got me up and walking next day I only needed the walker the first day. My diet was gradually advanced to soups and then solids which I was so happy to get real food again and was able to swallow it. My surgery was 06/10/24 and today is about 7.5 months since and honestly I can't even complain I can eat anything without anything getting stuck or gagging I've gained weight back, I'm back working full-time and pretty much doing everything i was doing before this happened. I'm now on a year of immunotherapy to help keep it from hopefully returning but I'm having no nasty side effects from it other than some itchy skin now n then but it seems to be working I just had my first post surgery 6 month follow up scan and I was NED no evidence of Disease. Any other questions feel free to reach out
@@will7285 wow. Thank you for the detailed and fast response. I'm so happy to hear you are doing well. That's awesome. I got diagnosed in December last year and things have been moving fast. So far I'm a month into chemo and radiation and I feel a lot better already, swallowing much better etc. My chemo is different, they have me on taxol and carboplatin once per week. So far no real side effects. I'm young and overall in good health aside from the tumor in my esophagus LOL. Surgery scares the shit out of me. They will also do it robotically/laparoscopic or whatever. I have to get an echocardiogram and pulmonary function test first. And yes then another scan after chemo/radiation to make sure it hasn't spread. I would have been so scared after your liver lit up like that! But I guess it makes sense from the radiation.
@@xConnnnorrrr for me the radiation/chemo somewhat improved my symptoms but it still hurt to eat and was uncomfortable my tumor was 7.3 cm to start then shrunk to 3.3 cm after chemo/radiation. If it had killed the tumor completely maybe i would of not had surgery but probably would of still gotten it because of the node involvement. I dunno how long I'll live now but as long as I am I at least wanna feel good and be able to eat and have a good quality of life however long it ends up being
@@will7285 idk why my last comment got removed? But yeah I feel the same way. I think my tumor is like 3 inches long? But my symptoms have greatly improved, I'm eating whatever I want and have gained almost 20 pounds. I send my prayers and blessings to you. I hope you have a long life. I am the same way, I don't care how much time I have left, I just want whatever time I have to be of high quality. It's on me also, I put off my symptoms for so long man. I definitely fucked up.
I had GERD, Barrett’s, chemotherapy, then Ivor Lewis operation = removal of esophagus. 20 years later still going strong- modified lifestyle, gaviscon, and no bungee jumping. Gave up PPI’s as was wrecking my kidneys.
Of course these guys want to slice and dice. It's what they do and is incredibly lucrative. As a nurse I saw the outcomes of this procedure and I don't think I would go through with it. I've always been of the view that it's quality of life, not quality. But that is an individual's decision. PS, I found they guy in the glasses incredibly arrogant and wouldn't let him near me.
You’re negative thinking. What we see as nurses is not people who are doing well post op but people who are having problems. Your opinion is based on seeing only those who do worse.
You’re negative thinking. What we see as nurses is not people who are doing well post op but people who are having problems. Your opinion is based on seeing only those who do worse.
I'm the perfect EC patient to see this video and weigh in since i counsel hundreds all over the world now. I did do the whole schmear... CROSS protocol, esophagectomy (7/2020), then a year of adjuvant Opdivo. I am pretty much back to normal now... and still NED. But i have no agenda when i counsel others. Sure, my own EC journey counts for something, but it's what I've learned from hundreds of others that have taught me much! I've seen some crazy things. But us patients are transparent... and i find many patients who trust me more than their doctors... which of course i don't like... i always yell them i am not a doctor... but i do understand the trust they've placed in me since I've been guiding them on their journeys. It's very tough, both mentally and physically... and none of us can be guaranteed a dang thing. So i help them understand how all the pieces fit together to hopefully get them to NED status.
My ex had a temper tantrum in the scheduling /customer service desk area. He had finished chemo/radiation and stent. Because of his outburst, he was denied further care. That's what he says. I wasn't there (his decision). Does that happen? We live in Vermont with only 1 or 2 hospitals to receive that surgery.
@carolynwheaton9884 It was kind of you to reply. He denied further care (68 yrs old), chose hospice care, and died a few months later. At first, I was angry and then the grieving, still. I'm really okay, now. Thanks again!
@sandilobianco6734 Thank you. I agree. I've been sarcastically humiliated in front of others at "the desk! " It's very unkind, unprofessional, and dangerous...as in my ex's case.
I've been diagnosed with gist of the esophagus ,gist runs in my family sadly few have passed away from it and I'm basically left fucked ,I live in ireland and I'm waiting ,I want the operation but the sergan is a ass ,I've even had to ask for a different sergan gist in the esophagus is rare,it's crazy I've email gist groups and not one has replied to eney of my emails i know this is old ,video but it's crazy
I had an esophagectomy. The first year afterwards was hell. I had severe GERD attacks with stomach acid like battery acid during these episodes I panicked every time. It was mandatory sleeping inclined to avoid acid attacks. I had 4 inches removed including the valve that keeps the stomach contents from coming back up. I am now in my 9th year after I was told I had 4-6 months to live. I am cancer free now. If you catch this early enough you should choose the operation because this death thing is so hard on your loved ones. I still suffer to this day but I have more control over it every year. My life now includes stool softeners, nausea medicine and acid reducers but when I see my three boys faces I realize it was worth it.
i was being bullied into a " lifestyle changing surgery". surgeons only want to cut. Listen, I dont mean that, im sure there are alot of good men that save lives, however we are still in the dinosaur days w EC. No matter how you cut it, its a tough decision for Us. my sergion was trying to squeeze me in before a vacation, i was offended with his disregard to my life. even got mad saying i would die a horrible death. I allready understand that , thats why i chose not to live a horrible LIFE
How can you be cured without surgery if it's adenocarcinoma? Poor job in differentiating squamous vs adenocarcinoma in regards to your treatment discussion. Just confusing and irresponsible to clarify.
@aron gortman well my dads was still local no lymph node and he did the surgery it went really well and he's currently 1 year in remission. It really depends how good the surgeon is.
What a ultra disgusting educator point of view ! Gross invasive measures with a history of complication which have led to more surgeries , if all this doesn't kill you most of the patient's who have gone through this often times horrific experience some how adds to quality of life how ? Having to eat small amounts of food six times a day & calibrate by reaction how much food can be consumed .. There's so many non competent so called professionals out there .. & the team is only good as the weakest link at that point in time it's all hands on deck ! Selling this to a victim of cancer is already a tough sell ... marketing sucks beyond mentioning here ! Fear as a tactic sucks big time as well ! Confidence in the medical field has diminished due to screw ups ! You want trust have you earned it ? Are you so above the victim that you project such a disdain for those who lack confidence in trusting screw ups ? Just because specialist have jumped through the hoops & it cost them a huge a mount of money to be educated doesn't appeal to the cancer victim ! Pride among those who administer means nothing to the victim of cancer ! /... Some folks pay extreme close attention to details not adding to the patience risk for a crappy outcome ! The poor have even less security of mind ... No freaking short cuts or crappy workmanship .. If there was many positive outcomes with less complications that lead to more surgeries to fix the crappy job perhaps it wouldn't be a marketing scheme based upon outcome .. when it's a actual reality based option with less risk of complications the victim of cancer is more than willing to comply ... DO NOT BS the victim ! quality of care without having to under go more invasive surgery to fix the complications caused by the first surgery sucks beyond belief for the cancer victim ! I am facing all this ... I may or may not get the best care out there at the time of my treatment .. Even the best of the best have off moments .. trusting in human Beings isn't easy !
Surgery/chemo/ ECT. May add a year or two ( poor quality years) Forget that! All that surgery and hospital bills left to my family! Uthenas should be allowed for Americans.
I am so sorry. We are currently refusing the surgery and the doctors are pissed and not proving us with alternative treatment options. Thank you for sharing
Sounds to me that there pushing this surgery....They need to tell the truth... I think it's always a good thing to do your own research...Never dismiss your on gut feeling..
I am sorry to hear people don’t have the surgery. I had chemo radiation and then the esophagecomy. I had many complications, all of them short of death I would guess. It was the hardest thing I have ever done but I got through it. 4.5 years clear now. I’m optimistic. It does get easier over time.
I live in Melbourne Australia. I had an Ivor Lewis procedure on Oct. 2009. It was a life-saving operation for me. I was 80 years old. I will be 91 next September. I am in very good health, can eat and drink what I like, meals are smaller but a normal 3 times a day. My weight before the operation was 74 kilos, I am now a steady 67 Kilos. I am very grateful to my Surgeon and his team.
@@charlesstewart3424 my father has esophageal cancer.. He can't eat anything. Even Water... Due to financial problems we were unable to take him to any private hospital.. So confused what to do.. He is 75 now..
they were pissed at me when i refused, the whole thing fealt shady, they screwed me up during a 2nd endoscopy, down there 45 minutes n ony one paragraph. said doctor was preasant in n out of room. WTF. im tired now ill tell the whole story soon. so far after walking away completley. i gained all my wieght back,sice i lost 50 lbs during radiation, im eating great. actually fealt wrong ( spiritualy)to munipulate my body like that in hopes to maybe live a little longer. besides after the surgery, its immediate suffering
Everything is Great, i understood, and understand the consiquences of refusing surgery.. im so okay with that. almost dissapointed that im doing so well, was looking foward to the next chapter
Probably because she knows she is the caregiver in her family and knows exactly what type of treatment she can expect when she is not able to care for herself……. Yeah….. what you said.
My partner has had surgery and doing absolutely brilliant he never watches Internet...he is eating normally...and living his life...I'm so proud of him.
I had a diagnosis of established Stage2. Figured I owed it to my then 7yr old son to do all I could to not have his memory of his Dad being sad…
Took the 5 weeks of daily Mon-Fri Radio & weekly followed by 10hr upper/end of Ivor Lewis oesaphagectomy. The operation may or may not have been necessary and was a Big One. First three weeks in particular was by far the worst phase of the whole journey since diagnosis. Gradually MUCH improved and I’m 100% pleased to have gone for it - I owe it to my family to be happy for the inconvenience to have given them a 20% better survival rate.
My biopsy is 100% clear. Bless the NHS here in the U.K. ❤
My father had this type of cancer back in 1988, he had the surgery, the the year following with him ultimately passing, was horrific, his quality of life due to the surgery alone was tremendously diminished. Fast forward to 2015 my brother in laws mom had the same cancer, same Tx plan with same out come. It absolutely dumbfounded me that in 30 years and the technology available had not progressed and that the surgery was just a violent some 30 years later. I have just recently been diagnosed with Barrett's Esophagus, and I'll be having 2 surgeries to correct it. We can do much better!!!
So what did you do to your best action ofcourse?
So... what ablation treatments were tried on you. And yes, no doubt treatments (chemotherapy and immunotherapy and radiation) have changed since 1988. And how esophagectomies are done have changed greatly as well. But still... the odds of Barrett's actually turning into EC... still very small statistically speaking (unless most cells show high grade dysplasia).
@@gvwing Hello, on November 7th, 2023, my son was diagnosed with stage 4 esophageal cancer with liver metastasis, a few weeks later we found he also had thyroid cancer. We were told he only had six months to live. He was in a lot of pain and was unable to eat solid or semi solid food , only liquid diet but due to his liver tumor, he had really bad nausea and he vomited even the liquid he drank, he lost more than 50lbs. On December 14th he had a procedure done called cryotherapy to shrink and kill his esophagus cancerous tumors followed by immunotherapy and chemotherapy in January and he’s doing a lot better, now he’s able to eat and has gained a few pounds and also is pain free. It’s been already six months since his diagnosis and he seems to be doing better every day even though doctors say his cancer is terminal. I have to mention that he started taking supplements from a product called 4Life which has 4 different types of mushrooms and a juice made of Apple, Purple Grape, Blueberry, Açaí , Pomegranate, and Elderberry fruit juice, I firmly believe these supplements kept him alive when he wasn’t able to eat or keep liquids down, amazingly, he was able to keep down this juice and the capsules most of the time. I also gave him homemade beet, carrot and red apple juice without the pulp made with a masticating juicer. His oncologist said he probably had anemia and wouldn’t be able to receive chemo and immunotherapy but to her surprise, his hemoglobin was good enough to receive treatment. In two weeks he will have a PET scan done to check if his cancer has stopped spreading 🙏🏼.
@@karamarquez767Good luck on his PETscan 🙏🍀
@@karamarquez767Prayers to you!
I am now 73 years old, had the surgery 26 months ago. Recovery was HARD but slowly got better over the 26 months. I am always grateful that I had the surgery, despite the challenges it involves. It definitely changed my eating (4-6 small amounts), sometimes have motility issues, sometimes GERD and infrequently aspiration BUT, I am alive, with my family, exceecising 6 - 7 days a week! No regrets.
Way to go. You have lots to live for.
I'm opting for quality of life over the length of life. I'm in the first stages of cancer did chemo & radiation pet scan shows I'm clear of cancer. I'm opting for follow up exams and if it returns doing whatever treatments are available then. Im 60 yrs old at the moment.
My husband listened to his Dr. re his stage 4 esophageal cancer, and I wish we didn’t !! We actually thought he had a chance, NO and the last year of his tortured nightmare of a life was constant drs appointments , treatments surgeries procedures, so that extra time was for dr appointments ,........
This surgery was brutal! I’m two months post op and I can only eat about a cup of food at a time. If I overeat, I get excruciating pain. I just found out that it has spread to my bones. I regret having the surgery.
I live in Melbourne Australia. I had an Ivor Lewis procedure on Oct. 29, 2009, I was 80 years old I am now 91 and in good health. I can eat normal time meals, only half the size as I used to. Before the operation I weighed 74 Kilos, I now am steady on 67 Kilos. I am grateful to the surgeon and his team for these years and the future they have given me. Anyone who refuses to take the opportunity given them should rethink. Charles.
Australia has socialize medicine don't they?
In America, the families are left with millions in debt for the medical bills.
@@ksdad2two I had private health cover when I had surgery, and still have. My son 69 years old has just been diagnosed with same cancer plus further complications. He has no private insurance but the public health system is treating him with excellent attention and little delay. I heard Trump say that America had the best health system in the world. Australia could show him a real public health system. Our private system covers whatever you specify, ex. hip replacements etc. straight away, but the uninsured have to go on a long waiting list for free treatment. We are the lucky country. Charles.
Can you discuss your pathology report a little? Were you lymph node positive?
Congrats on beating this. GOD BLESS
Hi Charles, you have given me much heart. I was operated on 2 months ago using the same operating procedure. They have me on inmunotherapy now as the cancer got into my lymph nodes - my surgeon assured me though he managed to cut out all the cancer after having chemo and radiotherapy. How long did it take you to regain full fitness because I would love to go back to work but find that I am still quite fatigued and light headed most of the time. Also were you really weak and sore afterwards because I am still unable to lift heavy objects or even mow the lawn. I am eating fine though which is a great positive and I am roughly the same weight as yourself now, whilst being somewhat overweight to begin with. I was 76 kilos a year ago and now I am 63 kgs. All the best.
@@ksdad2two Yes, we are extremely fortunate that a fraction of our gross wages goes to a safety net so we may all access healthcare when we need it, including myself.
I had an Ivor Lewis procedure 13 months ago. I have been in misery ever since. My doctor and surgeons in Atlanta failed to inform me of the quality of life after being operated on. Severe weight loss, always on the edge of exhaustion. Almost nightly I asperate in my sleep. Have to constantly have to nibble food. If I eat a somewhat normal meal its a 50/50 chance I'll end up with dumping symdrome. I still have to take reglan, and a med for nausea . With the least amount of work I cramp up so severely I have to stop and rest. I can't matain my weight much less gain any to feel better. I'm 63 yr old, if I'd have been informed that they were other options, I may have made a different dicision. This has been the most miserable 13 months a human could suffer. Now my pet scans are showing abnormal uptake at g.i. junction where i had operation done to remove my esopphigus and most my stomach. After being told I was now cancer free.
I am really sorry to hear. It's been 3 months since my op. I managed to start the lawn mower today and mowed the nature strip, out the front of my house. That is a huge win. I ate rump steak the other night. Felt like it was getting caught. I will stick to mince meat or lamb cutlets. I can only manage entre size or smaller portions of food, but I am eating normally, not just soup. I am feeling constantly light headed and fatigued. My surgeon did say it will be atleast 18 months before I will be normal in the meantime I am undertaking immunotherapy - nivolomab, which if I have any dairy product gives me the runs. It's fun stuff, but atleast I am here, writing this, otherwise, well you know the althernative. Keep the faith brother.
Quality of life vs. quantity - this is scary stuff....I'd rather be made comfortable and live out my life without surgery, chemo or radiation.
At the end of the day, it's the patients choice. PERIOD. My dad has this cancer and he may end up not having this surgery due to other health issues.
How is your father now?
I had an esophagectomy. The first recovery year afterwards was hell. I had severe GERD attacks with stomach acid like battery acid during these episodes I panicked every time. It was mandatory sleeping inclined to avoid acid attacks. I had 4 inches removed including the valve that keeps the stomach contents from coming back up. I am now in my 9th year after I was told I had 4-6 months to live. I am cancer free now. If you catch this early enough you should choose the operation because this death thing is so hard on your loved ones. I still suffer to this day but I have more control over it every year. My life now includes stool softeners, nausea medicine and acid reducers but when I see my three boys faces I realize it was worth it. I will be 66 this year.
If it causing major consequences for not getting surgery then why so many people are dying from surgery after their cancer treatment🤔😳🤷😐😑💯👉💀
My husband had this surgery 2 days ago. Recovery begins. If anyone is interested I will update here in the future x
How you doing, its been about the same time for myself after having surgery using the Ivor Lewis method. Huge win today, managed to mow the lawn. You have to take the small wins, like the first time you eat steak. I'm on a course of immunotherapy at the minute, once a fortnight, to ward off any return of the beast. I wish I could go back to work, but I feel fatigued and light headed most of the day.
How was his recovery? I hope he’s doing well now
@Seraphin.a WOW, I can't thank you enough for updating the people who took the time to respond to your post
People don’t have the operation because of quality of life or not after surgery
That was all a bit... odd. I mean, who woulda thunk that not having a surgery that should be done leads to a worse outcome? Did you need a study for that? Seriously? 🤔
Then they've been wondering why people refuse, the answer being, "We don't know"-well, I hate to state the obvious, but how about you like, ASK them? 🙈
I mean, I'd do that if I was selling popsicles at Walmart for 50¢ a piece and people refused to buy them, should be a no-brainer when it comes to potentially life-saving treatments.
At this point, I can't even make up my mind if they were interested professionally or out of fear of potential unemployment. In the end, all you can do is say, "Look, we need to cut that stuff out, or you're gonna be dead in a year or two", and the patient will either nod or refuse, easy as that.
On a side note, my mother suffered from esophageal cancer, and they tore her open 6 or 7 times from all sides (minimally invasive wasn't even a thing back then) and left her in a state of unbearable pain and misery, softened only through shots of morphine all around the clock until she finally died (nope, fentanyl patches weren't a thing back then, either).
So, the horror stories on the Internet may just be worth reading after all, and I can't blame anyone for noping out of that show. My heart goes out to everyone suffering from this hideous cancer.
Surgery is a big money maker. That's why doctors are so eager to do surgery. My father underwent surgery and radiation for laryngeal cancer. He only lived 1 year after treatment.
I had the Ivor Lewis. I was told not even half of what will or could happen to me. I was told to get my affairs in order. I was so overwhelmed. Don't read to much, don't worry, we'll take care of you. Basically, one is a warm body. If you fit the requirements for surgery and got medical insurance, you're golden...plus everybody can have a go at you. Believe you me, I know. After the surgery, I had the feeling, they were done with me. That's it, twice a year check up $$$$. They did what they wanted, now you go figure out your new body and why nothing is working anymore. Of course getting sick was all my fault. I remember a nurse telling me, if you don't sign this form, breathing will become more and more difficult, checking her watch. That was so wrong , but I was unable to get away. All this was similar to watching a horror movie and realizing you're not watching, you're in it. This is a $150 billion industry, will they find a cure?
I’m hearing of this type of thing happening more and more. It’s an emotional ordeal for crying out loud! Did he seek treatment elsewhere?
I’m following my Dad’s lead. He refused treatment and accepted death. He didn’t want to be a lab rat.
Lew Fez Hi, do you mind how long your father lasted after refusing the surgery?
1 year
how are you doing now?
I'm on a year now@@matrixkernel
My brother was just told this week that he has this cancer
They will not perform surgery
We are all so much in a state of wandering
There seams to be no hope he can not eat the cancer they said has spread
This I think is what hell must be like
How are you doing now, did you get a different opinion.
My mom was the same, they denied her surgery. I took her to all the best hospitals UCSF, Davis, Stanford....none would operate on her. That was basically her death sentence. She had amazing medical insurance. She passed 1 year and 1 day from diagnosis. I am sorry. Yes, it is hell and I am glad that she is not suffering anymore, but I miss her everyday. She never got to meet her grandchildren.
Had my surgery a month ago was frightened but felt it was my best chance after watching every video on the subject i could find. Eating is much better i seem to have no limit on what i can eat the amount i can eat is also very good unless i really push the envelope i dont have any issues i can vacuum, mow grass, do stairs etc. If the cancer spreads to other organs they wont do the surgery mine took 8 hrs to complete had 1 complication after the surgery so far a plueral effusion because they have to collapse your lung to do the procedure i had fluid build up between my chest wall and lung making me short of breath because my lung couldnt expand all the way due to the fluid but went back to hospital and they put a small chest tube back in to drain it and now its doing much better and i can breath properly again. Im 44 years old and still recovering but so far given the chance id make the same decision to go forward with surgery i was stage 3 with lymph node involvement T3N2
Yo how are you doing now? I'm 30 and going through chemo and radiation now. Stage 3 with lymph involvement as well. I'm still on the fence about the surgery. Would love your opinion
@xConnnnorrrr of course. I was on the folfox with Oxiplatin I went to infusion center and 3 hrs or so there and then have to take home the pump for 46 hrs. After that came off the sick would come for 3-4 days and the stinging from drinking anything cold or having cold air touch me was brutal so drink like room temp things. I had to do 4 rounds of that. The radiation i did I think 25 appointments and that was uneventful until the end. They will tell you your esophagus will feel like it's badly sunburned on the inside of your throat and it may swell nearly closed again until it heals which is very uncomfortable. I ate freeze pops and chicken broth during this time. *** This part is very important*** when you finish your chemo and radiation you will have a pet scan to make sure there is no spread of cancer which will determine if you can have the surgery or not when I had my pet scan my liver lit up and I was told I was not able to proceed with the surgery but that he wanted to biopsy to be sure. I had the liver biopsy and it came back negative for cancer so the doctor did a diagnostic laproscopy surgery where he goes in with a camera and looks around and there was no cancer on my liver so my surgery was reinstated my doctor said my liver lit up on the scan due to inflammation from the radiation still being present. As far as the surgery went no way around it I was absolutely terrified the younger you are the better you do because your body heals better mine was robotic and took 8 hrs I wasn't in a great deal of pain after waking up of course they had me on meds but I was aware and they got me up and walking next day I only needed the walker the first day. My diet was gradually advanced to soups and then solids which I was so happy to get real food again and was able to swallow it. My surgery was 06/10/24 and today is about 7.5 months since and honestly I can't even complain I can eat anything without anything getting stuck or gagging I've gained weight back, I'm back working full-time and pretty much doing everything i was doing before this happened. I'm now on a year of immunotherapy to help keep it from hopefully returning but I'm having no nasty side effects from it other than some itchy skin now n then but it seems to be working I just had my first post surgery 6 month follow up scan and I was NED no evidence of Disease. Any other questions feel free to reach out
@@will7285 wow. Thank you for the detailed and fast response. I'm so happy to hear you are doing well. That's awesome. I got diagnosed in December last year and things have been moving fast. So far I'm a month into chemo and radiation and I feel a lot better already, swallowing much better etc. My chemo is different, they have me on taxol and carboplatin once per week. So far no real side effects. I'm young and overall in good health aside from the tumor in my esophagus LOL. Surgery scares the shit out of me. They will also do it robotically/laparoscopic or whatever. I have to get an echocardiogram and pulmonary function test first. And yes then another scan after chemo/radiation to make sure it hasn't spread. I would have been so scared after your liver lit up like that! But I guess it makes sense from the radiation.
@@xConnnnorrrr for me the radiation/chemo somewhat improved my symptoms but it still hurt to eat and was uncomfortable my tumor was 7.3 cm to start then shrunk to 3.3 cm after chemo/radiation. If it had killed the tumor completely maybe i would of not had surgery but probably would of still gotten it because of the node involvement. I dunno how long I'll live now but as long as I am I at least wanna feel good and be able to eat and have a good quality of life however long it ends up being
@@will7285 idk why my last comment got removed? But yeah I feel the same way. I think my tumor is like 3 inches long? But my symptoms have greatly improved, I'm eating whatever I want and have gained almost 20 pounds. I send my prayers and blessings to you. I hope you have a long life. I am the same way, I don't care how much time I have left, I just want whatever time I have to be of high quality. It's on me also, I put off my symptoms for so long man. I definitely fucked up.
I had GERD, Barrett’s, chemotherapy, then Ivor Lewis operation = removal of esophagus. 20 years later still going strong- modified lifestyle, gaviscon, and no bungee jumping. Gave up PPI’s as was wrecking my kidneys.
Of course these guys want to slice and dice. It's what they do and is incredibly lucrative. As a nurse I saw the outcomes of this procedure and I don't think I would go through with it. I've always been of the view that it's quality of life, not quality. But that is an individual's decision. PS, I found they guy in the glasses incredibly arrogant and wouldn't let him near me.
You’re negative thinking. What we see as nurses is not people who are doing well post op but people who are having problems. Your opinion is based on seeing only those who do worse.
You’re negative thinking. What we see as nurses is not people who are doing well post op but people who are having problems. Your opinion is based on seeing only those who do worse.
@@maureenbailey2931 It’s an individual choice. I wouldn’t have it, you might. That’s your choice and that’s my choice.
I'm the perfect EC patient to see this video and weigh in since i counsel hundreds all over the world now. I did do the whole schmear... CROSS protocol, esophagectomy (7/2020), then a year of adjuvant Opdivo. I am pretty much back to normal now... and still NED. But i have no agenda when i counsel others. Sure, my own EC journey counts for something, but it's what I've learned from hundreds of others that have taught me much! I've seen some crazy things. But us patients are transparent... and i find many patients who trust me more than their doctors... which of course i don't like... i always yell them i am not a doctor... but i do understand the trust they've placed in me since I've been guiding them on their journeys. It's very tough, both mentally and physically... and none of us can be guaranteed a dang thing. So i help them understand how all the pieces fit together to hopefully get them to NED status.
Thanks for all you do and be well.
Excellent... keep it up!
My ex had a temper tantrum in the scheduling /customer service desk area. He had finished chemo/radiation and stent. Because of his outburst, he was denied further care. That's what he says. I wasn't there (his decision). Does that happen? We live in Vermont with only 1 or 2 hospitals to receive that surgery.
Sad, when scared we have outburst.Glad you are his friend 😢
@carolynwheaton9884 It was kind of you to reply. He denied further care (68 yrs old), chose hospice care, and died a few months later. At first, I was angry and then the grieving, still. I'm really okay, now. Thanks again!
Sorry to hear about your ex, Marlene. I think many doctors/ nurses cause patients to have outbursts. The staff can be very arrogant.
@sandilobianco6734 Thank you. I agree. I've been sarcastically humiliated in front of others at "the desk! " It's very unkind, unprofessional, and dangerous...as in my ex's case.
I've been diagnosed with gist of the esophagus ,gist runs in my family sadly few have passed away from it and I'm basically left fucked ,I live in ireland and I'm waiting ,I want the operation but the sergan is a ass ,I've even had to ask for a different sergan gist in the esophagus is rare,it's crazy I've email gist groups and not one has replied to eney of my emails i know this is old ,video but it's crazy
The only one we can truly trust is God, Michelle. I hope you find a good doctor that will help you.
typically how much time does surgery buy for the patient?
I had an esophagectomy. The first year afterwards was hell. I had severe GERD attacks with stomach acid like battery acid during these episodes I panicked every time. It was mandatory sleeping inclined to avoid acid attacks. I had 4 inches removed including the valve that keeps the stomach contents from coming back up. I am now in my 9th year after I was told I had 4-6 months to live. I am cancer free now. If you catch this early enough you should choose the operation because this death thing is so hard on your loved ones. I still suffer to this day but I have more control over it every year. My life now includes stool softeners, nausea medicine and acid reducers but when I see my three boys faces I realize it was worth it.
You are such a lovely couple. I love to see your videos. Inspiring. I wish you success in your journey.
i was being bullied into a " lifestyle changing surgery". surgeons only want to cut. Listen, I dont mean that, im sure there are alot of good men that save lives, however we are still in the dinosaur days w EC. No matter how you cut it, its a tough decision for Us. my sergion was trying to squeeze me in before a vacation, i was offended with his disregard to my life. even got mad saying i would die a horrible death. I allready understand that , thats why i chose not to live a horrible LIFE
fire Harley Hi, so you refused treatment? Do you mind me asking what stage when diagnosed?
stage 3
I did 25 days radiation, as well as 5 chemo treatments july 2019
@@nighthawk3378 how are you doing now?
How can you be cured without surgery if it's adenocarcinoma? Poor job in differentiating squamous vs adenocarcinoma in regards to your treatment discussion. Just confusing and irresponsible to clarify.
God's intervention needed for a healing.
@aron gortman well my dads was still local no lymph node and he did the surgery it went really well and he's currently 1 year in remission. It really depends how good the surgeon is.
@aron gortman chemo radiation then surgery. Radiation alone won't put you disease free
Accusing some patients of being all over the internet, moaning....wow. Nice.
And the statement that only those who are having a negative experience are online complaining about it. I was shocked he said that!!!!
What a ultra disgusting educator point of view ! Gross invasive measures with a history of complication which have led to more surgeries , if all this doesn't kill you most of the patient's who have gone through this often times horrific experience some how adds to quality of life how ? Having to eat small amounts of food six times a day & calibrate by reaction how much food can be consumed .. There's so many non competent so called professionals out there .. & the team is only good as the weakest link at that point in time it's all hands on deck ! Selling this to a victim of cancer is already a tough sell ... marketing sucks beyond mentioning here ! Fear as a tactic sucks big time as well ! Confidence in the medical field has diminished due to screw ups ! You want trust have you earned it ? Are you so above the victim that you project such a disdain for those who lack confidence in trusting screw ups ? Just because specialist have jumped through the hoops & it cost them a huge a mount of money to be educated doesn't appeal to the cancer victim ! Pride among those who administer means nothing to the victim of cancer ! /... Some folks pay extreme close attention to details not adding to the patience risk for a crappy outcome ! The poor have even less security of mind ... No freaking short cuts or crappy workmanship .. If there was many positive outcomes with less complications that lead to more surgeries to fix the crappy job perhaps it wouldn't be a marketing scheme based upon outcome .. when it's a actual reality based option with less risk of complications the victim of cancer is more than willing to comply ... DO NOT BS the victim ! quality of care without having to under go more invasive surgery to fix the complications caused by the first surgery sucks beyond belief for the cancer victim ! I am facing all this ... I may or may not get the best care out there at the time of my treatment .. Even the best of the best have off moments .. trusting in human Beings isn't easy !
Also maybe that the patient is a slab of meat and a paycheck. Once surgery is over, so long. Plus, you still have pain? Tough shit, take aspirin
Surgery/chemo/ ECT.
May add a year or two ( poor quality years)
Forget that! All that surgery and hospital bills left to my family!
Uthenas should be allowed for Americans.
I am so sorry. We are currently refusing the surgery and the doctors are pissed and not proving us with alternative treatment options. Thank you for sharing
so 36 months is the top survival rate, even with this surgery? Do any of the patients survive indefinitely?
Sounds to me that there pushing this surgery....They need to tell the truth... I think it's always a good thing to do your own research...Never dismiss your on gut feeling..
I am sorry to hear people don’t have the surgery. I had chemo radiation and then the esophagecomy. I had many complications, all of them short of death I would guess. It was the hardest thing I have ever done but I got through it. 4.5 years clear now. I’m optimistic. It does get easier over time.
may you live long quality life
my father suffering from esophagus cancer undergoing chemo & radiation therapy. Dr's recommend the surgery after this.
I live in Melbourne Australia. I had an Ivor Lewis procedure on Oct. 2009. It was a life-saving operation for me. I was 80 years old. I will be 91 next September. I am in very good health, can eat and drink what I like, meals are smaller but a normal 3 times a day. My weight before the operation was 74 kilos, I am now a steady 67 Kilos. I am very grateful to my Surgeon and his team.
@@charlesstewart3424 my father has esophageal cancer.. He can't eat anything. Even Water... Due to financial problems we were unable to take him to any private hospital.. So confused what to do.. He is 75 now..
Hi did your father have the surgery, y husband is currently going thru this and they want him to have
they were pissed at me when i refused, the whole thing fealt shady, they screwed me up during a 2nd endoscopy, down there 45 minutes n ony one paragraph. said doctor was preasant in n out of room. WTF.
im tired now ill tell the whole story soon. so far after walking away completley. i gained all my wieght back,sice i lost 50 lbs during radiation, im eating great. actually fealt wrong ( spiritualy)to munipulate my body like that in hopes to maybe live a little longer. besides after the surgery, its immediate suffering
How are you doing now bud? Everything good?
Everything is Great, i understood, and understand the consiquences of refusing surgery.. im so okay with that. almost dissapointed that im doing so well, was looking foward to the next chapter
No fear, only a loving God
Where was your bad endoscopy at?
HOW ARE U NOW
Female here. Maybe they want out. No shame in being exhausted if you really are
Probably because she knows she is the caregiver in her family and knows exactly what type of treatment she can expect when she is not able to care for herself……. Yeah….. what you said.
Thank you for refusing to remove esophagis!!!
thought i might need it someday
No chance