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Stage 4 GEJ: Should we switch to MAYO?
Hi there,
My husband has been diagnosed 2 months ago as "oligometastatic stage 4" with moderately differentiated adenocarcinoma. He's being treated in Texas but we're not satisfied.
His team has been very slow and made numerous mistakes that caused significant emotional trauma. We waited for 3 weeks just to have his port installed. Then it got infected which caused a delay in treatment. Our family had to beg for every appointment and scan and in spite of us rushing them it still took them a month to figure out his stage. His genomic profiling report is incomplete because there wasn't enough tissue and our oncologist didn't even bother telling us about it, I just figured it out on my own. Not to mention more advanced things like DPYD gene mutation or ChemoID, I found out about those from support groups.
We're looking for a clinic that performs tests thoroughly and quickly. He's very young, in his 30s and as an oligometastatic stage 4 patient, he would benefit from more aggressive treatment, which includes radiation and surgery.
What are your experiences with Mayo clinic? Would you recommend it? We're traveling to Jacksonville in 2 weeks for initial appointment.
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Welcome, @nora89. I'm glad to hear that you've got an appointment scheduled at Mayo Clinic in Jacksonville. You and your husband will be in good hands at Mayo Clinic. I'm tagging a few members who have experience with esophageal cancer and treatment at Mayo Clinic, some of them at the Florida campus, others in Minnesota or Arizona.
Nora, what treatments has your husband had? How is he doing? How are YOU doing?
I highly recommend Mayo Clinic - Rochester, Minnesota - where I was treated last year with excellent results.
I had two months of FLOT chemo followed by 25 radiation sessions (plus 3 more chemo treatments) and then an Esophagectomy.
I had a feeding tube for 8 months as I could not swallow originally, then chemo and radiation messed up my taste buds.
My doctors - the Mayo doctors - are experienced, skilled, and caring as are their staffs.
I moved to Rochester to have my treatment, the best decision I made.
The whole EC experience is very challenging, but you will fight your way through it.
You will be happy if you choose to go through that fight with the Mayo professionals.
We can visit if you want.
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3 ReactionsHi Colleen!
He's currently on FOLFOX + Opdivo. He only had 2 rounds and we hope that there wouldn't be a delay in his treatment when we switch him to Mayo Clinic. We're not sure how well he's responding to that treatment because it's too early.
He's doing well and to me he's a true hero. Chemo is quite brutal, he sleeps for 3-4 days straight, but than he bounces back. The rest of the family is stressed out, we're researching non stop and we're trying to find right information and resources. He is our everything and we want to see him get well and thrive in life 🙂
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3 ReactionsThanks for replying @gdj ! What stage were you at the time of diagnosis? And how long did you wait for the treatment to begin after moving to Rochester?
Stage 4. Advanced localized disease. Big tumor lower esophagus into stomach juncture and two lymph nodes - lower left, upper right.
Diagnosed locally, then about two weeks until Mayo with oncologist, radiation oncologist, and surgeon. They had a plan when I arrived - subject to additional study to make sure cancer wasn’t other places.
Chemo started two weeks later after feeding tube ( and abdomen exploration for more cancer (painful for 2-3 days after - none found)) and port put in my upper right chest to infuse chemo, take blood, etc. (that was easy).
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