New DX? Learn from our frustration

DesertILC

The primary care physician did not tell us anything except to see a surgeon. I discovered my wife needed an MRI from researching online.

And because her primary care physician was taking a two-week holiday vacation, we had to get the MRI referral from a different doctor in the office. We thought we dodged a bullet on prompt treatment - The surgeon would not have seen her without the MRI.

However, the surgeon tells us, "oh you need to see an oncologist." So, we go and find an oncologist (who was not able to see her until January 5, 2017).

The oncologist wanted her to get a genetic test that takes 2 weeks, but he told us we can go ahead and proceed with scheduling before the results come back.

The surgeon's office then scheduled the surgery. The evening before the surgery, the surgeon calls and asks the name of the radiation oncologist. We respond "what are you talking about?"

We then learned that without a radiation oncologist on the team, so we cannot have the surgery. We call around and find a radiation oncologist. The earliest my wife could be seen was today.

And, guess what? Yep, today we learned we also need to find a plastic surgeon to be part of the surgical team the day the mastectomies happen for the reconstruction.

We have only found one plastic surgeon who takes the marketplace insurance and the earliest he can see my wife is on February 16.

Only after that appointment will the plastic surgeon talk to the surgeon (who has told Lori she is not taking any more marketplace patients and is going to terminate the marketplace contract she has) to coordinate their schedules so they are both in the operating room at the same time.

If they had simply given us a checklist of doctors and appointments we needed, we would've had everything scheduled immediately upon receiving the diagnosis. Now we have absolutely no idea whether we will even have a surgeon by the time the plastic surgeon can also be involved.

Sorry, I needed to vent. And also, hopefully this can help others get all of their ducks in a row faster than we could

ShetlandPony

This is terribly frustrating. Is there a university-based or NCI cancer center that takes your plan? What would be ideal is a place that has a tumor board where all the doctors meet together to plan treatment. They work at the same institution, and they communicate with each other. Ask for a tumor board. Otherwise, does your insurance have a nurse navigator available to help coordinate and facilitate? Call and ask.