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.

zonner
Since no one from Phonex has responded yet, I am responding even though I'm in Florida. I was diagnosed with cancerous tumor in lower esophagus and have been through 28 days of radiation and chemo. The really good news is that latest PET scan showed cancer is gone. I'd be happy to try and answer questions you may have about treatment and side affects which I assume you have had?

REPLY

My husband started his work up in Rochester, and is having his chemo and ongoing follow up in Florida. Mayo - Arizona is the one we
have not had the privilege of visiting.
I agree that Mayo is the best!
Surgery is not an option for my husband, so we are unable to answer any questions about that. Anything else, feel free to ask.

REPLY

I went through treatment for stage 3 esophageal cancer at Mayo Clinic in Phoenix. As of December, I am cancer free. I cannot agree with you more that Mayo is the very best. Everyone there is so caring, understanding and at the top of their field. I did not have the same doctors but I know that you’re in very good hands. I had immuno therapy as well as folfox and surgery. The surgeon was phenomenal and the healing part wasn’t as bad as I thought it would be. I also worked with one of the social workers there and it really helped me during and after my treatment. They recommended a program called Imerman Angels where you are matched up with a mentor that has had the same diagnosis and similar treatment. This has by far been the most helpful resource for me. Just try to stay positive and fight with everything you have inside of you. You’re going to get through this. I am happy to share my experiences with you and try to help in anyway I can.

REPLY
@bunnymom

I went through treatment for stage 3 esophageal cancer at Mayo Clinic in Phoenix. As of December, I am cancer free. I cannot agree with you more that Mayo is the very best. Everyone there is so caring, understanding and at the top of their field. I did not have the same doctors but I know that you’re in very good hands. I had immuno therapy as well as folfox and surgery. The surgeon was phenomenal and the healing part wasn’t as bad as I thought it would be. I also worked with one of the social workers there and it really helped me during and after my treatment. They recommended a program called Imerman Angels where you are matched up with a mentor that has had the same diagnosis and similar treatment. This has by far been the most helpful resource for me. Just try to stay positive and fight with everything you have inside of you. You’re going to get through this. I am happy to share my experiences with you and try to help in anyway I can.

Jump to this post

Thank you for your response. I will look into the Imerman Angles program. As I work through finishing chemo and radiation, which has been fairly mild to date, I will began to assemble my thoughts toward the surgery. Post surgery recovery, are you experiencing fatigue? Would you say you are back to living your life doing the same things you did prior to being diagnosed? Would you say your recovery took 4-6 months, or longer? I am very active and that is probably my biggest concern. I know every situation is different and people heal differently. Frankly the surgery scares the hell out of me as it seems to be so invasive. But I want to see my grandkids grow up, so I am prepared for whatever God sends my way. I may reach out to you moving forward if questions come up. I hope things continue to go well for you. Thanks.

REPLY
@jmp1514

My husband started his work up in Rochester, and is having his chemo and ongoing follow up in Florida. Mayo - Arizona is the one we
have not had the privilege of visiting.
I agree that Mayo is the best!
Surgery is not an option for my husband, so we are unable to answer any questions about that. Anything else, feel free to ask.

Jump to this post

Thank you for responding. I hope things work out for you and your husband.

REPLY
@zzonner

Thank you for your response. I will look into the Imerman Angles program. As I work through finishing chemo and radiation, which has been fairly mild to date, I will began to assemble my thoughts toward the surgery. Post surgery recovery, are you experiencing fatigue? Would you say you are back to living your life doing the same things you did prior to being diagnosed? Would you say your recovery took 4-6 months, or longer? I am very active and that is probably my biggest concern. I know every situation is different and people heal differently. Frankly the surgery scares the hell out of me as it seems to be so invasive. But I want to see my grandkids grow up, so I am prepared for whatever God sends my way. I may reach out to you moving forward if questions come up. I hope things continue to go well for you. Thanks.

Jump to this post

Post surgery I did experience fatigue. Some days I have more energy than others. I had my surgery end of September and I would say it took a month and a half to two months to get back to eating soft foods and feeling more like myself. Prior to, I wasn’t a very active person but since my surgery I have started going to the gym and walking every day.
My life is different now, It’s definitely been an adjustment. Some days I can do more than others, and that’s ok. It’s important to listen to your body and give yourself grace when your having tougher days. I’d say I’m still recovering but with everyday that passes it gets better.
Just try to stay positive. You’re going to kick cancers a** and be there to see your grandkids grow up.
My thoughts and prayers are with you. Please reach out to me if you have any questions or if you just need someone to talk to.

REPLY

I was diagnosed with prostate cancer October of 2019 and had surgery February 2020. Was feeling fine and then diagnosed with esophageal cancer November 2020. Had esophageal surgery December 23, 2020 in the midst of Covid restrictions so no visitors allowed. Much to just about everyone’s surprise, biopsy taken during surgery showed that it had spread to one lymph node. So, then had proton beam radiation (25 treatments) plus at home chemo. Current scans are clean - no evidence of cancer anywhere. Very lucky to be able to have all my treatments at Mayo AZ. The entire team including surgeons and numerous other doctors, PAs, nurses, admin people and cleaning crew have been nothing short of wonderful. I did hit some road bumps along the way but I have never experienced such dedicated, coordinated medical treatment by a team that sincerely cared and helped me each step along the way. I am glad to share my experiences or answer any questions if I am able. Best of luck to you!

REPLY

After discovering spread to one lymph node, did they complete the surgery? If not, have you had the surgery yet? My husband is Stage 4, but after 12 weeks of chemo, no cancer outside of the esophagus is seen by PET. He is now finishing his 5 weeks of chemo/radiation at Mayo - Rochester. Does he stand any chance of surgery if there was mets to lung previously identified?

REPLY

Surgery was already completed when pathology confirmed cancer in that one lymph node. The original plan was for surgery only - with no need for either chemo or radiation. The biopsy was taken during surgery with every expectation that it would be negative. Well, surprise surprise - it was positive. So, after waiting a few weeks to regain strength following the surgery, they then prescribed radiation and chemo. Sorry, I really cannot help with your question regarding lung involvement.

REPLY

I am a EC warrior stage X - did aggressive treatment. No feeding tube. No surgery . NED almost 3 years. I do a great deal of a la natural stuff. It’s a tough road. Wishing you the best …, there’s hope & more join EC Groups on FB you learn a lot!!!

REPLY
Please sign in or register to post a reply.