Next steps, MD suggestions

Posted by cezeta57 @cezeta57, Feb 7 10:36am

Hi all,
A family member has been diagnosed with esophageal cancer. He also may have paraneoplastic syndrome which has limited his mobility, e.g. he cannot stand or walk. The tumor continues to bleed necessitating transfusions. With all the issues, treatment of the tumor has been on hold. Are any of you aware of physicians familiar with these concerns we could contact?

Thanks much for your insights and best wishes to you all as you deal with this.

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Colleen Young, Connect Director | @colleenyoung | Feb 7 11:22am

Welcome, @cezeta57. This is tough that your family member's diagnosis of esophageal cancer has been complicated by paraneoplastic syndrome of the nervous system and tumor bleeding. I suggest looking into care at Mayo Clinic where they can get care from a multidisciplinary team. they will benefit from specialty care from neurologists as well as esophageal cancer oncologists and other specialties who have experience evaluating and treating people with paraneoplastic syndromes of the nervous system.

- Paraneoplastic syndromes of the nervous system care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/paraneoplastic-syndromes/care-at-mayo-clinic/mac-20355694

As you probably know, Mayo Clinic has locations in Rochester, MN, Phoenix, AZ and Jacksonville, FL. You can submit a referral request on behalf of your family member here: http://mayocl.in/1mtmR63

Would one of the 3 Mayo locations be possible for your family member?

mrgvw | @mrgvw | Feb 8 8:27am

I've talked with hundreds of my fellow EC patients... and I've never seen paraneoplastic syndrome in any of them. In the chicken or the egg scenario... did the cancer come first? It seems PNS is brought on by metastatic tumors. Can it be treated by quick resection of the tumor... causing the PNS to go away? What stage is his EC? Any spread seen outside the esophagus? His solid esophageal tumor bleeding so much is not common when first being dx'd... is this a complication of the PNS? Oh brother!

dave640 | @dave640 | Feb 8 8:42am

I think Colleen's suggestion is a good one. Our experience was that all you have to do is call the 800 number, and they are ready to get you into their system quickly and easily.

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