I called Member Services asking for the name of the oncologist who specializes in pancreatic cancer, and they couldn't give me a name. They transferred me to one office after another trying to see if someone could find such a specialist. No one could find any. I was told to put up all the oncology profiles (they are online) one after the other, and read through them to see if anyone listed a specialty in pancreatic cancer. There are about 150 Kaiser oncologists in the Southern California area, and I set about to read each profile, hoping to find the one. After 30 or 40 I gave up.
Because Kaiser itself had no way to find one, and because I could not find one after reading so many profiles, I believe there are none. I called the PanCan Network, they gave me all sorts of info including the top three recommendations, UCLA, Cedars, and City of Hope. Kaiser would not pay for a second opinion at any of them, would only allow a second opinion from within, and because they had no pancreatic cancer specialist, I had to take her elsewhere. That meant buying private insurance. That is what we had to do.
She was not referred specifically to City of Hope. I called all three recommendations and City of Hope was the only one that gave us the time of day. UCLA and Cedars are almost impossible to reach, no one calls back, you are transferred all around the mulberry bush, and the magic words when I finally got a human being was "What is your insurance?" Her insurance was not acceptable, and we were immediately refused. However, City of Hope at least took the time to discuss alternatives, although it involved buying new insurance. But at least they were nice enough to explain things to me about it. So we bought private insurance and she is now being treated at City of Hope.
It's costing a fortune, besides the premiums co-pays are 30%. Co-pay for one particular med is $600 per treatment. And so far they are not doing anything different from Kaiser. In view of this, I think we may have been premature in changing at this time, perhaps an out-of-pocket consult would have been enough, but they advised me this would be only one appointment at a cost of $1,100.00. If we wanted to treat there we'd still have to buy insurance, and advised that we should put that money toward the cost of the insurance.
Various people have told me City of Hope will take people who can't pay, but they never told me anything like that. People who can't pay get Medi-CAL, which they will take, but it must be a specific kind which is very hard to get. Ordinary Medi-CAL is not accepted there.
City of Hope is 50 miles from us, one-way. And no one is allowed in the facility, so whoever takes the patient must sit outside in the open for the amount of time it takes. Lab work, a visit with the doctor, and an infusion of chemo can take almost all day. With the pandemic, whoever takes her can't even go into a restaurant, a store, or anywhere to pass the time. You sit in your car.
I was taking her to all appointments at Kaiser, 15 minutes from home, but Bert is now taking her to City of Hope, an hour-plus drive, and an all day outing. I really would like to be the one to take her, but it would be extremely difficult for me to drive 100 miles and sit outside in the cold all day. She calls me on speaker when she sees the doctor and I hear a little bit, but it's not the same as being there. I can't get a feel for the place nor the doctor. It's making me nervous.
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