The Assertive Cancer Patient

How to Drive Your Doctor Nuts (Or Not ...)

The link to this article arrived in my mailbox this morning, and I thought I'd pass it on. 

Please note that No. 2 on the list of ways to drive your doctor nuts is to NOT TELL him or her about the herbal supplements you may be taking. 

I've had any number of cancer patients tell me over the years that they are taking some herbal concoction without telling their oncologist about it. Their excuses are usually "it's natural"--meaning it can't hurt them--or, "He'll be angry"--meaning the doctor. 

So, Excuse No. 1: If the supplement is powerful enough to have any benefit, it is powerful enough to do harm. 

Excuse No. 2: Not telling your doctor about something you are taking takes passive-aggressive behavior to a whole new level. Be enough of a man (or woman) to fess up and discuss it with the doctor. You might save your life. 

Here's the link to the full article: Six Patient Behaviors That Drive Doctors Nuts

@ Jeanne Sather 2009. 

More About the Red Flag Rule

Here's more about medical identity theft and the Red Flag Rule, from the Naples (Florida) Daily News. 

The story says that one survey found that 4.5 percent of the 8.3 million victims of identity theft experienced what it calls "medical identity theft," meaning that someone used their identities to receive medical care.

The story also talks about the theft of patient information by employees, and gives this example:

The problem of internal theft hit home in Southwest Florida in September 2006, when a front desk clerk of Cleveland Clinic in Weston was indicted and accused of stealing personal information, including Medicare and Social Security numbers, of more than 1,100 patients of the then- Cleveland Clinic in North Naples off Pine Ridge Road. The employee, a 22-year-old woman, sold the information to her cousin for false Medicare billing.

The theft occurred sometime between May 2005 when the woman was hired and before her indictment in September 2006. 

Read the story: Health Record Identity Theft

I've been fighting a mostly losing battle to protect my identity in medical situations since 2005 when a cancer patient here in Seattle had his identity stolen by an employee at the cancer center where he was being treated at the time. 

The employee ran up something like $40,000 or $50,000 worth of credit card debt in the leukemia patient's name, and was ultimately tracked down by the patient himself. 

I was a patient at the same cancer center at the time, and I was very angry that the Seattle Cancer Care Alliance never communicated with its patients about the case or told us what it was doing to protect our personal information. We had to learn about it from the newspapers. 

Here's my earlier post: Don't Lie to Me

Here's a story in the Wall Street Journal about patient identity theft: A New Medical Worry  

@ Jeanne Sather 2009. 

Don't Lie to Me

Last week I had an appointment with a gastroenterologist who was new to me. 

So I had all the usual new patient paperwork to fill out, including those requests for an "emergency contact" and my social security number, which I have learned to leave blank in order to keep this info from falling into the hands of the bill collectors, including outside collection agencies, not to mention identity thieves.   

(Not that I don't intend to pay my bill, let me hasten to add, but I've become sensitized to the whole patient privacy/identity theft issue recently.)

The woman at the front desk asked to see my driver's license when I checked in for my appointment. Now, the same thing had happened to me a week before at my appointment with my lung specialist, so I was ready for this question. 

I told her she could see it to verify my identity, but she couldn't take a copy for the files. 

She replied that the FTC REQUIRES the office to make a copy of my driver's license to prevent identity theft under the Red Flag Program. 

And that was a lie. 

This appointment was at Puget Sound Gastroenterology's Northgate Office, and I was given a copy of a memo from the director of patient financial services, Vicki Farretta, and also a copy of something titled "Red Flag Scripts" which said, in part: 

"We are required by the Federal TC [sic] to verify each patient's identity with a photo ID. ... This requirement also includes maintaining a copy of that photo in your record."

Now, I'm sure the patient financial services folks are loving this, but the last thing I want is for my SS#, name, address, birth date, and driver's license number to be all together in one handy place. That makes identity theft just all too easy. 

I did some searching online about the Red Flag Rule and found out that the AMA is opposed to doctors and medical practices being required to set up Red Flag Programs, but also the rules do not require that any business take and keep a copy of their customers' driver's licenses. 

See: Identity Theft Rules

This source suggests that medical practices CHECK photo IDs before providing medical services, but says nothing about copying them.  

See also:

Be Careful With That Personal Info

HIPAA, Shmippa ...

@ Jeanne Sather 2009. 

 

Catching Up With Myself

Well, I finished my two-week marathon of doctor's appointments and tests, and I really can't recommend that strategy to anyone--it was tough. By the end, I simply wasn't able to absorb any more information, which is why I haven't blogged about Thursday's and Friday's events yet. 

And I think I'm going to skip over most of those events here, and just say that Dr. Lee and I agreed on a new treatment plan on Friday subject to Medicare's paying for it. The new plan, I'm calling "chemo light," is only targeted therapies, no conventional chemo. 

So the drugs I will be getting:

Avastin, every three weeks, by IV

Herceptin, every three weeks, by IV

Zometa, every six weeks, by IV

And Tykerb, three 250 mg. tablets daily. 

Dr. Lee wants to do some scans, but the contrast is hard on my kidneys, which are functioning at a borderline level, so we'd like to not stress them any more than necessary. He was worried about the possibility of a pulmonary embolism, though, and was going to consult with my lung specialist to see what she thought about the risk of embolism vs. the risk to my kidneys. 

Guess I need to call and see what their advice is about that. Or I could wait three weeks till my next appointment with Dr. Lee ... 

Another disturbing bit of information came out of Friday's appointment with Dr. Lee: The "chemo light" plan assumes that I get regular PET/CT scans to keep tabs on my cancer, but Dr. Lee said that Medicare only pays for ONE PET scan a year--something I didn't know. 

So now I have to decide how to tackle that problem--because I had my last PET/CT in January, but we'd like to do another one this summer. Has anyone else run into this problem with Medicare?

I figure my options are: Fight Medicare. Hold a bake sale. Scream at the universe. 

Meanwhile, I had a great holiday weekend, which included hours spent gardening, including getting most of my vegetable starts into appropriate containers, a couple of long walks with Connie the Wonder Dog, and a cookout with Car Guy and friends on Memorial Day. 

Everyone but me ate ribs, and then we had corn on the cob cooked on the grill, grilled mushrooms (done in foil packets with soy sauce, butter, and garlic), and cheesecake. This was at Car Guy's house, since he has a grill, and I took the kitten, Wilber, along for entertainment. 

A great time was had by all. 

@ Jeanne Sather 2009. 

Two and Three Down ...

I'm more than halfway through my two-week marathon of doctor's appointments, tests, and scans, and yesterday I had a two-fer: an appointment with my therapist followed by a repeat visit with my new lung specialist. 

Since the brain MRI has ruled out brain mets, and the cardiologist told me on Tuesday that my heart was fine, I figured we were getting close and the lung doctor would be able to tell me what is causing my shortness of breath. 

But no, that would be too easy. 

My lung doctor, Dr. Lynn Keenan, said she doesn't know what is causing my shortness of breath. Still. Yet. 

So that means more tests, and she recommended a test that she called "the Lance Armstrong," because you ride a stationary bike while hooked up to wires and a breathing mask and the machine gives lots of technical info about how your heart and lungs are working. 

Also, given that Dr. Keenan doesn't know why I'm short of breath, she said we can't rule out heart disease yet, despite the almost-perfect bill of health I thought I got from the heart doctor. 

Confused? 

I was. 

Anyway, I agreed to do the Lance Armstrong, but said it would have to be after my trip to Nebraska, so that's one thing pushed off into June. 

Today, I see another new doctor, a gastroenterologist, and may be scheduling yet another procedure, one in which a scope goes down my throat to look at my esophagus, which was burned in my most recent round of radiation. It hasn't been the same since. 

I still have the paperwork to fill out for that appointment, plus I need to shower and get dressed.

See:

I Hate This!

One Piece of the Puzzle

Knockin' 'em Down Like Ninepins

One Down ...

One Down ...

Good news today. 

I actually almost started dancing during my appointment, I was so happy to hear that my heart is fine! Absolutely, perfectly, wonderfully FINE.

Once the cardiologist had said that, there was very little more to discuss. I felt like jumping up and dancing my way out of the office, but I sat there and asked a few good questions, so now I have more info for the future. 

For example, she doesn't recommend repeating the ECHO exam routinely, just if I have symptoms. And, if I do have heart damage down the road, I asked if I would have to discontinue the Herceptin and Tykerb, and she said it would depend on what my other treatment options were. But it might be possible to treat the heart problem without stopping the Herceptin and etc. 

That's good news because I'm running low on treatment options. Or ones that I can tolerate, anyway.

What else? Oh, the chemo and radiation can affect the heart valves, something I didn't know, as well as the heart muscle itself. 

Having eliminated my heart (and my brain) as a source of my recent problems, we are down to the lungs. I see my new lung doctor tomorrow and will find out what she thinks then. Like I said, one down ...  

@ Jeanne Sather 2009. 

Knockin' 'em Down Like Nine Pins

That headline--Knockin' 'em down like nine pins--is the mental image I've created for myself to get through this week of nonstop medical appointments. 

I see myself just taking them one at a time, and knocking them down. It's a good image, strong, and I think it's going to work for me. 

Today is the cardiologist, so I'll get the results of the ECHO exam I had Monday a week ago. This is another new doctor, so a tiny bit of stress about that, but not too bad. 

Tomorrow is my therapist. I'll be talking about Deb, and losing her, and how vulnerable that makes me feel. 

Thursday--another new doctor, a gastroenterologist, and then a repeat visit with my new lung specialist. [Oops, just checked my calendar, and the appt. with the lung doctor is tomorrow, so that will be a heavy day.]

On Friday I wrap it all up with Dr. Lee, hopefully with enough info that we can make some decisions. I think I get treatment too--how is that possible? Seems like I was just in for treatment ...

Then a three-day holiday weekend. Not that holidays mean all that much when you aren't employed. But an excuse to hang out with the boys and Car Guy. Maybe grill something tasty. (No, I don't have a grill--that's Car Guy's thing.)

@ Jeanne Sather 2009. 

I HATE This!

I saw Dr. Lee last Friday, as scheduled. The plan was for us to discuss an alternative to the gemcitabine, which was a terrible drug for me and which I am no longer taking.  

But Dr. Lee had also referred me to a lung specialist, so I have two strings of appointments going here. 

When I saw him on Friday, he agreed that we need to know whether I have a heart problem or a lung problem before we make a decision about my next treatment regimen. Plus, I told him I was not willing to do another convention chemo drug right now--just too hard on me. 

My suggestion was to do a combo of Avastin, Herceptin, and Tykerb--all targeted therapies, all drugs I've had, but I've never had all three at once, only any two of the three, if that makes sense. 

I also want to have a good summer. I have two trips planned, and I want to be able to enjoy myself.

I didn't feel very well on Friday, I was a bit dizzy and dehydrated, and I'd thrown up at home early that morning. Dr. Lee wants to figure out why I'm throwing up, because the nausea doesn't seem to start in my stomach. It starts in my chest, in the esophagus, kind of like gastric reflux. I've had this problem since I had radiation in that area a year and a half ago. 

So he scheduled me for a brain MRI (because apparently brain mets cause vomiting), and I'm having that today. He also sent me to a gastroenterologist, with a recommendation that they scope me from the mouth down, to see if I have a fungal infection down there. (I'll be knocked out for this procedure, what fun!)

And, to top it off, a new prescription, for an anti-fungal. 

Here's the schedule for these two weeks:

Monday, May 11:    ECHO (an ultrasound of the heart)

Tuesday, today:    brain MRI

Wednesday:          therapist

Tuesday, May 19:  cardiologist, another new doctor

Wednesday:          therapist

Thursday:             gastroenterologist

Friday:                 Dr. Lee, plus treatment with Herceptin and zometa

And somewhere in there I need to schedule another appt. with Dr. Keenan, my new lung specialist. 

Any wonder I'm in a bad mood?  As always, support and solidarity is welcome. Advice is not. 

@ Jeanne Sather 2009. 

More About Doctors

A good story in the Wall Street Journal online about how tough it is to speak up when you think a doctor or nurse is doing something wrong. 

Or even when a doctor doesn't wash his hands before examining you. How many of you would/could speak up? Even knowing about all the awful antibiotic-resistant germs that you encounter in hospitals and clinics?

I think I'm an assertive person, but it took me years to be comfortable challenging my doctors or even my nurses. 

Read the story: Finding a Way to Ask Doctors Tough Questions

And here's yet more about doctors, from a new cancer blogger and online friend of mine, Penelope. Any woman who can title a post "Damn Doctor" is a friend of mine!

Read: Damn Doctor

It's a beautiful blog, by the way. Please stop by if you haven't read her blog before. 

@ Jeanne Sather 2009. 

NPR: Doctors Seek to Gag Patients

A friend sent me the link to a very interesting story on the NPR Web site (which, in fact, came from AP): Docs seek gag orders to stop patient reviews. 

According to the story, some doctors, in an attempt to stop their patients from rating them online, are asking patients to sign agreements that amount to gag orders. 

It's an interesting issue. Most of the comments posted to the NPR site suggest that Americans are too dumb to be able to fairly evaluate doctors, a position that I, in fact, do not agree with. 

I think we know what we want in a doctor, especially those of us living with serious chronic illnesses like cancer, and I think we have the right to share information about doctors. I do it all the time, both online through my blog and off-line in conversations with other cancer patients. 

I had considered adding a section of doctor recommendations to my blog, but decided it would be too much work for me to keep it up and to moderate it. 

The gag order thing ticks me off, though. Arrogant. "Don't criticize me if you want to be my patient."

I think people searching for information about a doctor will be smart enough to know that any review of a doctor is one person's opinion and to consider it in context with what else they know about the doctor.

 Read the story: Docs seek gag orders to stop patient reviews

And a related story on FOX: Medical Experts Riled ...

REMINDER: My interview with 20/20 airs tomorrow night. That's 10 p.m. on ABC. See: 20/20 Interview

@ Jeanne Sather 2009.