Advice for Getting Rochester 2nd Opinion Care

Posted by gooddaughter @gooddaughter, Jan 15 1:09pm

Hello @dtaylor75 @sepdvm @pellaw @maryhelen @survivorsuz @puprluvr @lori57216 @nbern @scarlettanager . Think we might have met several of you in the discussion group last week.

I'm trying to get my mom (84 yo in TN. Stage T2, N1, M0 prior to chemorad) into Mayo Rochester for 2nd opinion THIS MONTH for consults before making the big decision about esophagectomy. Chemo/rad completed 12/20 so we are on the countdown towards the 6-8 week surgery 'sweet spot'. She's leaning towards no surgery but endoscopic treatments if available & immunotherapy. Some questions...

1) I believe you all went to Rochester for your care. Which docs did you like, please? Did you have a choice?

2) Any insight into scheduling? They have had records for weeks; appointment requests went into GI and Thoracic Surgery over a week ago, but when I call they say it is 'waiting'. We need to be planning travel ASAP since I am told that virtual visits for consults across state lines are no longer possible.

3) The PET scan could no longer 'see' the tumor at GE junction. Her local docs are all pushing for esophagectomy, explained that the tumor 'breaks-up' but is usually still there. Anyone have experience with this? We would love to know if there are other tests (endoscopy? blood markers?) could be informative for the big surgery decision.

Thanks, all!
Joan

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

gooddaughter | @gooddaughter | Jan 20 4:22pm

Mom is doing well but her window for making surgery decision is closing fast & I can’t get Mayo appointments grouped for a single trip within the necessary timeframe. Seems like different groups do their own scheduling, so not easy for someone traveling. Surgery 2nd opinion appointment was easier to schedule but GI Clinic for info on alternative immunotherapy & palliative surgical treatments is really problematic. They require 2 sequential hard-to-get appointments before they will even schedule you with a physician. So I’m losing hope.