PAPPENSTANCE

Well…Hell

Yeah, yeah, yeah, we went to new patient orientation AND a chemo overview today, but that’s not the news of the day. No, the news came at about 4 pm from my local rad onc, who (rather meekly) said that after battling with my insurance company over authorization of the Intensity Modulated Radiation Therapy prescribed by my gyn onc team, the good folks at Blue Shield of California just “aren’t budging.”

Not only that, but she’s been told by someone in her office that Blue Shield has a pretty standard “no IMRT for gynecologic cancers” policy and that she has also had no luck getting anywhere with them.

So, sorry, she says. Our options are that you “self-pay” at a discounted rate or that we go ahead with 3D Conformal Radiation, which the insurance will authorize.

Now, I have no idea what the difference is. All I know is what I’ve been told all along the way: You have lymph node involvement, one of which is the para aortic node. It’s not big, might not even be anything, but it did light up on the PET Scan, so we’re going to get ahead of it and extend the radiation field to your abdomen to include it. Because we’re doing that, other organs are in danger, including your kidneys and bowel. We’re going to perform this Intensity Modulated Radiation Treatment because it can precisely hit the target with less chance of damaging nearby organs.

Is that the case with the other option? I’m not sure! It’s been presented to me as a “next best thing,” and I don’t DO “next best things.” Next best thing right now is beating cancer instead of having babies with my husband and buying a house. Next best thing is NOT putting my kidneys and bowels in danger and hoping for the best. Especially when I went through an hour of chemo learning to find out that it will be most devastating to my kidneys! As of this moment, there IS no settling.

The troublesome tidbit of info is that my local rad onc didn’t even think to bother my gyn onc team at UCSF. Not my rad onc whom I’ll see at the end of treatment for internal radiation (oh who also happens to be a Fellow of the American College of Radiology along with all sorts of accolades and belt notches) nor my gyn onc. I don’t know about you, but when I need to persuade someone to do what I need done, I bring in the big guns. As many as I can. And not because I don’t think I can handle it on my own (because I can), but what’s the harm in assembling the team? Knowing they’re there for back up? Being open to experiences and info you might not have?

Rest assured, I made it known that the UCSF team needed to be informed, even when she meekly protested that they “couldn’t really do anything,” and then reminded me they “might be on vacation.” They are my team, I reminded her. And they need to be informed of the progress here. And while she was finding me the cost of the treatment if I “self-paid,” I immediately emailed and called them. It was after hours, but I’m crossing fingers I hear something tomorrow.

We’ve decided not to go forward with treatment until we have more info. I just don’t feel like I’d be making the right decision with so little info and involvement by the whole team. If my UCSF rad onc came back and said, ‘you know, the difference between the two treatments is so negligible, it’s more important to get you treated,’ I’d totally trust him. But as of right now, I don’t feel informed enough to move forward.