Looking for others' experiences with Esophageal Cancer treatments

Posted by zzonner @zzonner, May 24, 2023

I am looking for folks that have been through this process, particularly in Phoenix. Any recommendations? I am in week 3 of Chemo and Proton Beam here in Phoenix and things are going well. Stage 2B or 3, with no Mets, yet. 3 more weeks to go then 6-8 weeks of healing prior to surgery. Trying to stay focused on getting through the chemo and radiation, then deal with the surgery. I am near 70, in good health and holding my weight. What support mechanisms do you recommend? I am talking to the Social Workers, Dieticians, and my doctors, Sio, Ahn and Beamer. Do you have any experience with any of them? I live 10 minutes from the hospital, which is nice. To this point, I can't say enough about the care and professionalism. Mayo is simply the best. To say I am nervous about the surgery would be an understatement. I am very active, built like a linebacker, and worried about the future. I looking for someone to bounce things off of as I move down this challenging road. My wife is my hero and keeps me focused, as do my 5 children and 5 grandkids. I have everything to live for. Thanks for listening.

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

I am same stage as you, chemo and 28 days of proton radiation, no cancer evident from PET and pathology Jan 4 and no cancer from biopsy this week, PET is in 2 weeks. Decided not to do the surgery.

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Hi. I had chemo and radiation then a month to recover. I too was built like a female linebacker lol, and proud of it! I was active and rarely sick. Anyway, I aspirated the night of surgery and ended up in ICU for 7 weeks. Never went through post surgery pain. It was rough for me with complications which I won't go into. It's now been 2.5 years and I am cancer free and my surgeon says, with glee, that I have 10% chance of it returning. I will take those odds. I am 85 lbs and was 135 when this all started. Eating has been tough with food getting lodged in the tube that replaced my asophogus and had to have 6 scopes to widen it. All is better now but I have realized that this will be an issue for the rest of my life. Life goes on. I have issues with acid in my stomach but have learned which foods/drinks upset it. Finally getting my strength back. My advice to you is to eat small meals throughout the day and when you feel up to it get some exercise. Most of all, be positive! You'll get through it, trust me. Good luck and best wishes.

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@doglover888

Hi. I had chemo and radiation then a month to recover. I too was built like a female linebacker lol, and proud of it! I was active and rarely sick. Anyway, I aspirated the night of surgery and ended up in ICU for 7 weeks. Never went through post surgery pain. It was rough for me with complications which I won't go into. It's now been 2.5 years and I am cancer free and my surgeon says, with glee, that I have 10% chance of it returning. I will take those odds. I am 85 lbs and was 135 when this all started. Eating has been tough with food getting lodged in the tube that replaced my asophogus and had to have 6 scopes to widen it. All is better now but I have realized that this will be an issue for the rest of my life. Life goes on. I have issues with acid in my stomach but have learned which foods/drinks upset it. Finally getting my strength back. My advice to you is to eat small meals throughout the day and when you feel up to it get some exercise. Most of all, be positive! You'll get through it, trust me. Good luck and best wishes.

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Thank you for your advice my dad is going through it right now he is in the hospital now . Has got 2 stents in his esophagus but it’s too small there not working so he has to get a j tube he is very thin makes me sad 😔 he just found out he has esophagus cancer

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@zzonner, how are you doing? How are managing with chemo and radiation?

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@bmccord44

Thank you for your advice my dad is going through it right now he is in the hospital now . Has got 2 stents in his esophagus but it’s too small there not working so he has to get a j tube he is very thin makes me sad 😔 he just found out he has esophagus cancer

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Hi there. Your dad sounds like a strong man. Just stay positive and all will be ok. Take care and wishing you well.
Deb

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@colleenyoung

@zzonner, how are you doing? How are managing with chemo and radiation?

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Last chemo today, 6 more radiation. I am told by the doctors I am doing extremely well, blood work is excellent. No problems with the chemo. Radiation is getting a bit rough, but still eating. Looking forward to a rest period. Thanks for asking.

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Hello,
I'm now 12 weeks post-surgery, having previously had chemo and radio-therapy. I'm based in the UK, so am not able to comment on your medical practise , but will happily answer any questions/concerns you may have as to the surgery and recovery . Hope all goes well

Rich

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@56899t52

I am same stage as you, chemo and 28 days of proton radiation, no cancer evident from PET and pathology Jan 4 and no cancer from biopsy this week, PET is in 2 weeks. Decided not to do the surgery.

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@56899t52 my husband has opted to not have the surgery either. He is 79 years old and T3MONO. Last biopsy showed "suspicious cells". Not exactly cancer, but they know the cells will evolve to cancer since it was there before chemo and radiation. His local oncologist will be starting Folfox Chemo + immunotherapy. We have a call today with Mayo to try to get a second opinion about treatment plan.

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@morrow44

@56899t52 my husband has opted to not have the surgery either. He is 79 years old and T3MONO. Last biopsy showed "suspicious cells". Not exactly cancer, but they know the cells will evolve to cancer since it was there before chemo and radiation. His local oncologist will be starting Folfox Chemo + immunotherapy. We have a call today with Mayo to try to get a second opinion about treatment plan.

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Turns out The Mayo clinic won't do video conferencing for this. We just wanted a second opinion. Even though I arranged to have a copy all of my husband's medical records sent to them, a nurse called yesterday to tell me that they will only do this in person. We live in Northern CA and Mayo is in Scottsdale, AZ. I feel so defeated.

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@morrow44

Turns out The Mayo clinic won't do video conferencing for this. We just wanted a second opinion. Even though I arranged to have a copy all of my husband's medical records sent to them, a nurse called yesterday to tell me that they will only do this in person. We live in Northern CA and Mayo is in Scottsdale, AZ. I feel so defeated.

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So sorry you are unable to accomplish your intent. I am currently under the care of Mayo Phoenix for esophageal cancer and can't say enough about their care. I do not know your husbands overall health condition and whether your are seeking a cure or palliative care. I can only say Mayo is the best hospital in the world and I would suggest it would be worth the trip to gain their opinion. There is a Residence Inn on the hospital property to accommodate your stay. It might be worth it for peace of mind. Good luck in your search.

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