I decided to seek a second opinion. I didn't want this doctor to be scared of her cancer and therefore not do a surgery that should be getting done or could have negative impact on her hearing. So, we met with an new ENT. He was great! He was so patient with Alexis and was able to get a camera in her ear to take a look at the concerned area. He also explained things to me exactly as they are and what the options are. What they are concerned about is if skin grows around that middle ear and dead skin cells start flaking off and piling up in there, it can do damage to the ear and cause hearing issues. So, they want to patch up those holes to prevent that. In order to do that, they graft skin from some other portion of her body and hope that it takes. Given that she is on chemo and steroids, this doctor said he would give it a 50/50 chance of working, and if it doesn't, we would have to repeat the surgery. This surgery is a rough one, with one or two night stay in the hospital, so we don't want to do it until it really needs to be done. So, after much discussion and me finally understanding what all the components are, we have decided to try and do surgery next spring while following up every 3 months to make certain no progress with that area has happened. We feel much better about the situation and now have a new ENT that can really explain things to us so we feel comfortable with the plan.
Alexis also recently got her hearing screening, and it showed additional hearing loss. They are 95% sure this is due to the chemo she is on. So, we will have to watch that as well, but this can be corrected with her hearing aids. In the grand scheme, a little sacrifice to have her life.
