Doctor yourself

I can't emphasize enough how important it is to be informed and involved in your healthcare. Unfortunately, in this day and age, that means you have to understand that you cannot completely trust that your doctor will do the right thing.

Maybe you have a wonderful doctor, who cares about you and who wants the best for you and will do everything perfectly. Maybe you have a caring doctor, but one who is overwhelmed with a caseload he has to take on to make his practice work and who overlooks things. Maybe you have a doctor who long ago lost interest in his job and like many people, is just doing the bare minimum to satisfy the job requirements while waiting for his next vacation. Maybe you have somebody incompetent. The fact is, you really can't know these things in the few minutes you'll be seeing your doctors. All you can do is know what is supposed to happen in the course of your treatment and if it doesn't happen, find out why.

It is long, long past the time when anybody should put blind faith into any medical professional, or treat their every word with reverence. Unless you find Marcus Welby practicing medicine - my best advice to you is to assume you are on your own and question, question, question.

Like I said before nobody is going to care about your treatment more than you are.

That leads me to my own situation.

I've read lots of studies on HER2+ breast cancer and the use of herceptin. Because this is a newer treatment, most of the studies on herceptin were in conjuction with an anthracycline chemotherapy drug called Adriamycin. Adriamycin causes cardiotoxity (heart problems). Herceptin causes cardiotoxity. In combination, a good percentage of people on this therapy got heart disease. Now, in most instances the heart problems were reversed after treatment, but the recommendation is to give heart scans before starting AC + H chemo.

The latest and greatest in chemo for HER2+ is TCH, which is what I'm getting. Taxotere, Carboplatin, and Herceptin. Taxotere is the substitute for Adriamycin and doesn't have the same cardiotoxic effect.

So, although I know a heart scan is routinely done for people using herceptin, I thought it was only for people still getting the AC/H regimen.

I was angered to discover yesterday, that this isn't the case. Right on the Herceptin packaging label, it says that everybody starting herceptin, whether with andriamycin or with taxotere and carboplatin should get a baseline heart function test:

Herceptin can cause left ventricular cardiac dysfunction, arrhythmias, hypertension, disabling cardiac failure, cardiomyopathy, and cardiac death.Herceptin can also cause asymptomatic decline in left ventricular ejection fraction (LVEF).
There is a 4−6 fold increase in the incidence of symptomatic myocardial dysfunction among patients receiving Herceptin as a single agent or in combination therapy compared with those not receiving Herceptin. The highest absolute incidence occurs when Herceptin is administered with an anthracycline.

Conduct thorough cardiac assessment, including history, physical examination, and determination of LVEF by echocardiogram or MUGA scan. The following schedule is recommended:
Baseline LVEF measurement immediately prior to initiation of Herceptin
LVEF measurements every 3 months during and upon completion of Herceptin
Repeat LVEF measurement at 4 week intervals if Herceptin is withheld for significant left ventricular cardiac dysfunction [see Dosage and Administration (2.2)]
LVEF measurements every 6 months for at least 2 years following completion of Herceptin as a component of adjuvant therapy.

I asked around on the cancer forums, and every single HER2+ person taking herceptin with any kind of chemo had gotten either an echocardiogram, or a MUGA (radioactive) heart scan.

I didn't get one.

With all my research, I didn't read something as simple as the prescribing label.

So, today I called my oncologist to find out why no test had been ordered for me. As is normal for them, I waited on hold for 20 minutes, which is my limit. I hung up and called back immediately and refused to be put on hold again. I explained my situation to the nurse, and they are going to ask the doctor and call me back.

I have no doubt that if I hadn't come across the packaging label, I wouldn't get a heart test at all.

Maybe my doctor has new research that says having a heart scan while on herceptin is no longer necessary. Maybe Genentech just hasn't gotten around to changing their prescribing label. Maybe he's cutting edge, in his short-sleeved shirts and ties with old Fords on them.

Or, maybe my doctor is incompetent, busy, uncaring, or all three. Yours might be too.

Don't trust that they aren't.

Here's the deal for me. I can understand an error like this. In my life, I've made errors too. I've forgotten things that are important.

What I can't understand is why I've called their office three times, been on hold for 20 minutes each, and twice have not had a return call.

Mistakes happen and I can forgive that. I can't forgive people who don't return my calls, doctors or no. I can't forgive people who obfuscate or lie. So, I am seriously considering finding another oncologist.

It depends on what is said when I get a call back.

Here is some advice to those newly diagnosed. Find a cancer forum and participate. Search for blogs like mine. Find out what other people are getting in the course of their treatment. Do the research but also read the prescribing information! Pay attention. We are not doctors and have not been trained to understand these things. But we aren't stupid either. And, when it comes to cancer and oncology, the treatments are pretty much rote, at least in the early stages. So, find out what your peers are getting and expect that for yourself, and if it doesn't happen, find out why.

I'll let you know.



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Taking charge of healthcare

One of the first pieces of advice I got when I told somebody I had cancer was to make sure I was assertive and to take charge of my own health care, since nobody will care about it as much as me.

That advice was given by somebody in the online world, who is unfamiliar with my personality.  Nobody who knows me would ever advise me to be assertive. In fact, they are usually wishing I had a bit more of that shy gene.

I do have a laziness problem though, particularly when it comes to doing stuff I don't want to do.

I was told by my surgeon on September 1st that I needed an MRI and that it would take a week or less for the insurance company to approve the test.

Today is day 9.  My most definitely unassertive husband, who usually believes in "letting people do their jobs" decided to remind me that I should have the appointment by now.   I knew that, of course, but not being in a hurry to hear I need my breast chopped off, I had decided that this was time for my unassertive side to be set free.  I had vowed to be more trusting of people, like he is.

But, since he called me to remind me, that means he's worried, and probably imagining that cancer growing so fast it pops through my breast and strangles him.   I decided to appease him, go back to my true nature, and call the doctor.

I called at noon, when everybody at school is at lunch and I have a second to myself.  Unfortunately, their office staff is gone then too, so I reached somebody in India, at least judging by the accent and the echoing conversational delay.  The office will be back open at 1:00, the kind lady tells me.

At 1:05 I called back.

I got a busy signal.

Seriously, dude, a busy signal?  I've not heard one of those since 1982.

At 1:09 I called back.  Yes, a busy signal again.

I feel like I've gone back in time.  I can't even leave a message!  I can't even reach India!

I tried again at 1:57, and this time I reached an actual office-staff person. I explained that I was waiting for insurance approval for an MRI. They said they'd check, and I was put on hold.

I held for a couple of minutes. 

I was cut off.

Whew!  I'm back in 2009 again.

I called back.

I repeated my name and explained that I'd been cut off.  The person, again, put me on hold.

And again, I was cut off.

I redialed, and this time, in a menacing but still nice voice (after all, these are the people who work for the guy who is wielding the scalpel) I say,  "I'm Ann, and I've just been cut off for the third time...."  She mumbled something about her not being responsible and she transferred me to somebody else.

Success!  The call went through.  I explained the problem (again) and said I'd been waiting for almost ten days, and I'd been told less than a week.  The woman I was speaking to said that people at the insurance company were probably going on vacations, and maybe that's why it took longer.  She'd call the insurance company and see what was going on, and she'd call me back.

Three minutes later, the phone rang.  Oh, they have the approval, they'll fax it right over to the radiology company.

Vacations, huh?  That approval paper was probably vacationing in my file this entire past week.  It was sucking down margaritas right next to my pathology reports, while I trudged along at work, waiting for a call.


I have a feeling that if I hadn't picked up the phone, I'd be waiting on that MRI until long after my chemo was done.  Or, at least, until my oncology visit the 14th, when he asks why I hadn't decided on surgery yet and I explain I'm still waiting on an MRI.

This is a prime example of why you have to keep on top of things.  And, despite my lack of desire for the things that are about to happen to me, I guess I have to make them happen anyway.
 
But what I want to know is - what if you are truly too exhausted and ill to make people do their jobs correctly?

At least we still have private health care and it only took one phone call (with a few hangups) to get it sorted out.  Can you imagine if the government ran it?  Can you imagine how many calls I'd have to make?  How many busy signals?  How many places I'd have to go?  Have you ever tried to get a new social security card, file for unemployment, or have you ever gotten the runaround at DMV - or a school district? (I work for the government - I know.)

Now try it hairless and sick on chemo.

No thanks.