Sunday, April 25, 2010

Philadelphia - the good and bad news

I'm still trying to wrap my brain around what happened in Philadelphia on last week.  It definitely did not go as I expected.  I expected to meet this bigwig, Dr. C. hear that my treatment plan is working ok and get advice on clinical trials to look out for.  Bute when Dr. C came in the room with a social worker and another Dr. I knew it was about to be turned upside down.   So you know the PET Scan I had at Dr. C's request last week, the test my HMO has never given me, it told Dr. C two things, that the cancer has spread to my liver -- I have one 2 cm tumor and that he believes the hormone therapy I am on isn't working AT ALL.  The only thing keeping my cancer from spreading is the bone medicine I get -- Aredia, and that's a piss poor one at that.  He said no one uses that anymore and the better drug is Zomeda, which my HMO doesn't prescribe.  He thinks the he hormone therapy never worked, and it's despite my current treatment plan that I'm still here.  I really didn't retain much after that.  He ordered a bunch of tests and a liver biopsy .  I'll describe that in another post, because it's such an intense experience, and yes, you are awake through it. 
We're going back to Philadelphia on Wednesday with all the results to get a new treatment plan from Dr. C.  His associate Dr. D is going to try to talk my HMO Doc into accepting it.  This isn't going to be easy.  I will likely have to start paying for my treatment myself while I fight my HMO.  A fight I've been told by other patients is almost impossible to win.  You have to try to shame the HMO into doing the right thing
At first I was devastated, there is no doubt about my liver.  They biopsied it to confirm it's the same cancer as my breast cancer.  Now I'm also furious at my HMO.
Ah, dear readers, where's the good news? you ask.  I'm not sure, but probably that I got this PET scan and put it in front of a serious oncologist.  Otherwise who knows when my HMO would have caught the infiltration to my liver.  

2 comments:

Anonymous said...

This sounds like what I'd never want to happen to anyone, much less a dear person like you, Melissa. I respect your fortitude, but wish such a battle for the best care wasn't needed. It sounds very hard and exhausting.

Anonymous said...

Melissa, I am so angry at your HMO. I hate that we have to fight for proper health care in this country. But I'm so glad you are in better hands now. Thinking of you.