Update on my mother's breast cancer, the "Who said blogging can't change things?" edition

After I recounted my mom's nightmare story about her long-undiagnosed metatastic breast cancer last week, someone from the hospital system where she gets her care, UCSF Medical Center, left me a comment. She said she might be able to help, and asked me to email her.

So I did.

And yes, she was able to help, although not with the things I was complaining about in that post. Those were over and done with. Last week, we had a brand new problem, one I didn't know about yet when I made that first post. So I dumped it in her lap and said, can you fix this?

The problem was a strange one, which even a number of friends of mine in the medical field found bizarre.  My mom wanted to be assigned to a different oncologist. There were several good reasons to change, but the main one is that she didn't have good communication with the oncologist she had seen only once, shortly after her mastectomy this winter. She didn't feel that she listened to her, and felt her concerns, questions and complaints about pain had been dismissed. Just the kind of relationship you want with the doctor who is going to help you fight for your life, right?

When my mom was in the hospital, the oncology residents who'd seen her told her she wouldn't be able to switch, but honestly, I didn't understand the sheer scope of that prohibition when they said it, nor how intransient the policy would prove to be. How could my mom be married for life to someone she'd been assigned to randomly, had seen once, and didn't care for? What kind of system is that?

However clear that seemed to me, it turns out that the oncology group that treats breast cancer at UCSF Medical Center has some very restrictive policies about changing from one oncologist to another within that group. "Restrictive" as in, they won't let you do it, for reasons that were explained to me but made zero sense. "When you've seen one oncologist," the spokesperson told me, "We consider that you've seen them all."

I might have to remember that if I ever can't pay all my bills. "When I've paid one bill," I'll say, "I consider that I've paid them all."

Although the person who delivered the news that my mom would not be able to change to the new oncologist she was being referred to by her primary care physician to treat the cancer that had gone undiagnosed by them for months and for which she was (and is) still not being treated also told me she'd have someone call me to see if an exception might be made, I confess I sat there in my car at the side of the road and cried my eyes out in anger, grief, and frustration.

Now, for the good news. It was when I got home after that phone call that I saw the comment on my earlier post, from someone at UCSF offering to help. I Googled her email address and saw she was who she said she was, and emailed her. She forwarded my email to someone in the patient relations department, who was able to get my mom some really compassionate, quick and effective help. The old oncologist released my mom, the new oncologist agreed to see her, and we have an appointment next Monday at noon.

So let me give credit where it's due: UCSF Medical Center not only helped us, they came to us and offered to help. They were protecting their brand, yes, but at least they put their money -- well, their time -- where their PR was.

And they monitor blogs. Who knew?

Comments

[EmilyS]

wow, just...wow. (shaking head sadly)
Do they have patient advocates at that hospital? I think it's some kind of requirement. It may be the same as "patient relations" there, though.

[TheWeyrd1]

Blog reading...who knew...heh. Good on you!

[EmilyS]

hey I know: they must have a "manager of emerging media" who googles them hourly! just like HSUS.

;-)

[KathyF]

You really make a good case for why I don't want anything to do with that new "health care reform" that Obama and congress are getting ready to pass. I want to be able to choose my doctor!

Oh wait...

Nevermind. Did someone say health care reform?