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Looking for others' experiences with Esophageal Cancer treatments
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.
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More on your question. I did lose 30 pounds but I was overweight so I now weight what I should and I am eating basically normal meals and staying steady at my ideal weight.
I was eating 4 to 6 meals a day but it seems my stomach stretched out so I am down to 3 or 4 meals and normal portions.
They cut my stomach from the navel up to my chest in between the breast plates, and then another cut in my throat on the side to join the esophagus and stomach there.
I am explaining this cause you asked if it was Ivor Lewis surgery and I can't recall.
Hope this helps 🙂
Yes thankyou Manuelo, it sounds very similar but my husbands chest wasn’t opened, to remove most of his tummy. It must have been a big surgery for you and pleased you are on the mend. My husband may need a Jtube to have nutrition administered as he can’t eat enough to keep weight on. He was very tall and thin b4 he was diagnosed and has lost 33lbs and still losing, so there’s not much left of him. Hopefully the feeding tube will help. 🙂 Thanks for yr answer.
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1 ReactionHi Deb, they didn’t cut my chest they cut from my chest down to the navel and also in mu neck. Yes it was a big surgery. Six hours.
I had a feeding tube put on at surgery. They should have put one for your husband’s surgery. Every one undergoing esophagectomy gets it so they can feed while the body recovers. I had mine on for a couple of months or so. I didn’t like having it but it kept me alive and fed while I recovered. Your husband should get one asap.
This may or may not resonate with you, but two of my most important supports through what is now a 6.5 year process is (1) creating a cancer journal, and (2) I “hired” (no money ... she is a friend) … a coach whose job has been (assigned by me) to help me keep this journey as a spiritual journey, not a medical one. Just met with her again last week.
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1 ReactionYes my husband had key hole surgery to remove his tumour and they removed three quarters of his stomach. It was a six hour surgery also. After surgery, he has a nasal gastric tube for nutrition and by the time he left the hospital was managing small amounts of food by mouth. He even started to gain a little weight..but six months after the surgery he has started to lose. He is hopefully seeing a surgeon this week where we live and I suspect they may decide on a j tube. Hope so. Thanks again.
Hi I’m Scott my surgery was nothing like there’s. I had two surgical teams. One team went from the front 4 small incisions to unhook my stomach from my esophagus. Other surgical teams went through my right side 5 incisions they were bigger they cut 20 cm or 4 inches of my esophagus out. They had to collapse my lung to get to my esophagus. My team of doctors and nurses was great I had total faith in them. And also had j tube for 6 months because I could not swallow food or drink. I had lost 45 lbs surgery was almost 9 hrs. Tell your husband to stay positive with your help he can. Also take walks together it does help. Just remember you and your husband can do this!!!
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2 ReactionsMine was different as well. 25 protons and 5 Carbo/Taxil chemo. 9 hour robotic surgery, 6 1” slits. My surgeon was 20’ away, 7 months pregnant. They did put in a feeding tube but only used it for a week. 2 years post op, no side effects. Lost 10 pounds total. Eat what ever I want in moderation of course. Was in the pool with my first beer 3?weeks after surgery. They did cryoablation in the chest nerves, I’ve had zero pain. Was treated at Mayo Phoenix. Did one year of immunotherapy. There are a lot of wonderful success stories. I am convinced attitude plays a huge roll. I was Stage 3. You will get through this.
Thank you so much Scott ! Yes they collapsed my husbands lung to get to the tumour also. After the surgery, they both collapsed which was very frightening and he was in ICU for a few days. He had a great surgeon, young also. In the states they seem to automatically give you a J tube…we weren’t given the option in the beginning, I wish we had looking back now but initially he was fine, even started to gain a little. It’s 6 months since surgery now and he’s really losing. We are staying positive over the cancer, but the weight loss is a worry. Thankyou for txting x
He also had 2 teams operating on him, one at the side and one through keyhole surgery through his abdomen. They were very good, just want to be offered the J tube now so will push for that.
It sounds like your surgery was the same as my husbands, his was called Ivor Lewis surgery. 2 teams working on him one through small incisions through his abdomen and the other through his side.