Johns Hopkins

I had high hopes for Johns Hopkins, and the guy told us some useful stuff -- like we need to get the breast biopsied, because the cancer might look different there than it did in the lymph node ....and he said that the disruption of the node removal surgery I have already had made some tests not useful anymore.... Also he thought it was silly to split up the chemo -- and we should jsut do chemo-surgery or surgery-chemo. (He thought chemo first.) After that there will also be radiation and hormone therapy. But he couldn't answer any questions we had about the specific chemo drugs because he's a surgical oncologist -- not a medical oncologist. And when I asked about seeing the medical oncologist he said we'd have to make an appointment and come back.

When I expressed dismay at this situation (I mean Baltimore is not halfway around the country, but it's not a nice bike ride, either) and my prior understanding that we were getting a team approach, and would have been scheduled to see both doctors when we made the initial appt, -- he suggested i go to Georgetown, make an appt with their oncology team -- and told me about some great people there.

So we left, having been basically dismissed, and called Georgetown. Well their oncology "team" is booking appointments starting in September..... They then passed my call to oncology -- which doesn't have that team approach -- and we left a message. It was the 4th message in the last ..... since late last week. We've never been called back.

Then when we got home there was a letter from the Mayo about our appt on Wednesday, which I had been hoping to be able to cancel by now (having found great coordinated care locally). telling us who we would be seeing (a medical AND a surgical oncologist) and told us to bring all tests and reports, and warned that they might do some over. They included a comprehensive list of things to bring (bottles of herbs and medications, for example.) It's a pity to have to get on a plane to find a place where we will (it appears) be taken care of in a coordinated way, but the fragmented care I was seeing here is driving me nuts!

Except at the Virginia Hospital Center -- a mile away. They've been great. For anything less than stage 2-3 breast cancer I would be happy to stay there. I am hoping to do most of my chemo there, though I think the Mayo will get me started.

And also -- I did make an appointment for tomorrow with a highly recommended oncologist (medical) but then when I mentioned him to Kathy she asked what hospital he's affiliated with and i said Sibley -- and she'd never heard of it. COurse it's not Georgetown. I've heard that people in the area are going to be somwehat competitive with each other -- so the surgeon he chooses might be great because they need to compete with georgetown surgeons. They would do some care coordination..... maybe it would work out and be great.....

... but we're going to the Mayo. We could still go see the guy tomorrow and then go to the Mayo and decide whether to stay there or not. (We'd have to pay out of pocket for the consultation with the guy tomorrow -- insurance won't pay for more than one 2nd opinion. I'm hoping to explain to insurance that the guy we saw today was surgical only.)

I don't know...... Partly we're going to the Mayo because they are offering us what we can't seem to get here -- this other guy might be offering it, but it's been too many disappointments already. I thought of trying to put it off but Kathy and Ted are here now, and won't be, next week. They can stay with the kids and help with their routine -- school and sports and stuff....

ANyway. I need to go type up a list of things for kathy & ted about the kids. And get to bed early.... and pack. I will try to make time for a bikeride tomorrow I think. I will post from MN if I manage to wrest control of the laptop from the boy. (He will NOT be pleased!!)