The Assertive Cancer Patient

Cyberknife Guy Answers My Questions

I had an appointment with Dr. Lee the Second, AKA Cyberknife Guy, this afternoon to discuss using cyberknife to treat the tumor in my left hip that is causing me so much pain. 

Those of you who have been following my story will remember that I just had cyberknife surgery a few weeks ago, to treat a tumor in my skull. And right now I'm in the middle of three weeks of daily radiation to treat a tumor in my right femur. 

As far as I'm concerned, this is waaay too much treatment, but I don't feel like I have much choice. This is one result of my taking time off from chemotherapy, and also a result of my not being able to tolerate the full dose of conventional chemo anymore, because I've had so many years of it. 

Chemo toxicity is the problem. 

Anyway, I really like Cyberknife Guy, even though he IS younger than I am, and I generally don't let anyone treat me who is not at least my age (this is going to get more and more difficult as I move further into my 50s, of course).

He is clearly very into his work, and he explains things thoroughly. So we looked at some scans of my bones and tried to determine which of the abnormal areas was the one that was hurting. A little poking and prodding, and some more conversation. 

Now the plan is for Cyberknife Guy to get my most recent PET/CT from the other Dr. Lee, my medical oncologist, and compare that to the CT and bone scan that he has. 

I may need another PET/CT to help plan this treatment, but maybe not. Once Dr. Lee has all the information he needs, he and his team will plan my treatment. (It's kind of like an elaborate math problem.) They'll get me in for a planning session or two, which will include a CT, and then they'll schedule the treatments. 

 Just like last time, it will probably be between three and five treatments, on consecutive days. I warned Dr. Lee that I was going to Hawaii on February 28, and that nothing was going to get in the way of that trip, but it shouldn't be a problem. 

Follow-up

Since I was there, we discussed my previous cyberknife treatment, and Dr. Lee answered my questions about the symptoms or side effects that I'd had that I thought were due to the cyberknife. 

The night sweats. He says yes, the treatment can cause that. 

The chills and shivery feeling. Also yes. He said that is caused by the dying cancer cells.  

I told him that my tongue had been feeling weird--not totally numb like it was back in November, but just a weird sensation of being aware of my tongue in my mouth in a way that I normally never am. He said that was caused by the cyberknife, but was no indication one way or the other as to whether my tongue would go numb again in the future. Just have to wait and see. 

Complaining

I had planned to talk to Dr. Lee at my one-month follow up appointment about the mistakes that were made with my decadron prescription, but since I was seeing him today, I printed out the several blog posts I'd written about this and took them along. 

I explained the two problems--that I wasn't told to take the decadron on the weekend between days two and three of my treatment, and also that the prescription was not written for a sufficient quantity of decadron. And I left the posts with him to read later. 

Dr. Lee responded as I would have expected him to. He said he welcomed the feedback and that he would discuss it with his staff. 

These are the posts I took to Dr. Lee: 

Decadron Prescription Errors

Math Error on the Decadron

Drugs, Drugs, and More Drugs

@ Jeanne Sather 2010. 

Decadron Prescription Errors

 Let's cut right to the chase--I'M ANGRY. 

I'm tired. I'm in pain. And I'm angry about the mistakes that a doctor made in writing my prescription for decadron, which I need to take throughout my cyberknife treatments and for a few days afterwards to prevent swelling at the tumor site, two inches deep inside my head. 

So not a body part that I want to mess around with.

When I picked up the decadron prescription, my doctor's nurse took me into an exam room to go over the dosing instructions, because it's complicated. I posted them to my blog as a way of going over them again and making sure I understood what I was supposed to do. I also posted the instructions in my bathroom, and of course they were on the pill bottle. 

But by Friday, my second day of cyberknife treatment, I realized that there weren't enough pills in the bottle. So I did the math, subtracting the pills I had taken to date (10) and the number I still needed to take, and I was way short.

I took my math notes and the pill bottle when I went in for treatment that day and consulted with the nurse again. 

She confirmed that I didn't have enough pills, but she said that my pharmacy--the Bartell's near 65th and Roosevelt in my neighborhood--had made the error. She said the original prescription was written for 2-mg. pills and the pharmacy had filled it with 1-mg. ones. The pharmacist should have given me 60 pills, she said, but they gave me 30. 

Well, that made sense, and the nurse offered to call the pharmacy and straighten the matter out. 

And there things stood until this afternoon when I went to pick up the rest of the decadron. 

As I said earlier, I'm tired. I'm in pain. And sorting out problems like this--even though I'm good at it--adds to my stress. Not a good thing. 

So I went up to the pharmacy window and didn't blame anyone. I just said, "A mistake was made in my decadron prescription and I'm here to pick up the rest of the pills. My doctor's nurse called you to straighten it out."

So far, so good, until the clerk wanted to charge me a second co-pay, of nine dollars and change. When you live on Social Security Disability (and donations to this blog and jewelry sales) like I do, $10 is a lot. I pointed out that this was the rest of the pills that I should have gotten the first time, so I didn't think I should have to pay a second co-pay. 

That, of course, required a pharmacist to straighten out, so I was asked to wait. Tired. In pain. I weighed myself on the handy digital scale and brooded a bit. 

But when the pharmacist called me to the window, she showed me both prescriptions from the cyberknife clinic, and that is where the error was made. 

The doctor did indeed write the prescription for 2-mg. pills, but for FIFTEEN of them. The pharmacist, correctly, doubled that number and gave me 30 pills, which was in no way enough to get me through five days of cyberknife treatments plus several days of tapering off after treatment is done. 

Is it too much to expect that people who go through medical school should be able to handle second-grade math? 

I don't think so. 

To make this even better, the prescription wasn't actually written by Dr. Lee the Second, who is in charge of my cyberknife treatments, but by Dr. Sandra Vermeulen--the woman I consider my radiation oncology nemesis--because she happened to be in the office at the time the prescription was needed and Dr. Lee wasn't. 

The Second Mistake

The second mistake that Dr. Vermeulen made in writing my prescription and the dose instructions was a potentially more serious error than not giving me the correct number of pills--She didn't tell me to take decadron on the weekend, which fell between days two and three of my treatments, and didn't add in an extra eight pills to take on those days. 

On Monday, I asked my technicians and the nurse if I should have been taking the decadron on the weekend, and they said yes. So I guessed wrong on that one, but no patient should have to guess about something this serious. 

Then the nurse asked me if I'd had any headaches or other problems over the weekend, and my answer was no. 

I won't let this drop. I'll bring it up with Dr. Lee when I see him for my follow-up appointment, which will be about one month from now. 

See also:

Drugs, Drugs, and More Drugs

Shill for Cyberknife? I Don't Think So  

Zap Me!

Cyberknife for Me

@ Jeanne Sather 2010. 

 

Math Error on the Decadron

On Friday I realized that I didn't have enough decadron to take it as prescribed throughout my five cyberknife treatments and then to taper off for several days after the last treatment. 

See: Drugs, Drugs, and More Drugs

The bottle should have contained 30 one-mg. tablets, but I only had half that. So when I went in for my treatment on Friday, I asked Dr. Lee's nurse about it. I was afraid that I had either been taking HALF the dose I should have, or maybe DOUBLE the dose ... argh. 

Estelle, the nurse, said that they wrote my prescription for 2-mg. tablets, but that the pharmacy had filled it with one-mg. pills. They did adjust the dosing correctly when writing out the instructions, so I was getting the right dose, thank goodness, but they forgot to give me twice as many pills, as they should have since I was taking one-mg. pills. 

Confused? 

I was. 

So the nurse called the pharmacy on my behalf to straighten it out, and I'll go by today to pick up the rest of the pills. Not the worst prescription drug mix-up I've ever seen, but still ... 

The Weekend

I realized over the weekend that my decadron instructions didn't tell me what I was supposed to do on the weekend. My first two treatments were last week, then no treatment on Saturday and Sunday, and then three more treatments this week. 

But should I have taken decadron on those days off? No one told me. I guess I could have tried the clinic to see if they have an answering service for weekends, but I just made an executive decision and didn't take any decadron on the weekend. 

I'll ask today to see if that was the right thing to do. So far, no signs of swelling at my tumor site. (If there was swelling there, my tongue would have gone numb.)

Today is my third date with Lenore, the computer-controlled robot that zaps my head 100 times in about 25 minutes with the cyberknife treatments. I'm not looking forward to going out, as it is raining like crazy and very dark. Not cold, though--temperatures are in the high 40s.

@ Jeanne Sather 2010.  

Paperless Prescriptions Mean Fewer Mistakes

Also less waiting time at the drugstore, according to a story from the Associated Press. 

The benefits--especially reducing the odds of a serious mixup because the doctor's handwriting is illegible--seem pretty clear. So what's not clear to me is why doctors are so against it. Only 10 percent are using the computerized system, according to the AP.

Medicare is paying a small (2 percent extra in reimbursements) incentive to doctors who switch to paperless prescriptions, but that's probably not enough to make it worthwhile. 

Read the story: Pushing doctors to ditch the prescription pad

See also:

 Fatal Rx Drug Errors Soar

Prescription Drug Errors 

(This post lists most of the things I do to make sure I'm not the victim of a prescription drug error. With six or eight different drugs in my medicine cabinet at any given time I take this issue seriously.) 

@ Jeanne Sather 2008.

Breast Cancer Second Opinions

When you have a biopsy to diagnose breast cancer (or another cancer), the slides are read by a pathologist who determines whether or not the sample is cancer, and then what type of cancer it is.

But regardless of the doctor you see--you may have already chosen an oncologist and surgeon who specialize in treating breast cancer, for example, rather than a general surgeon and general oncologist--your slides will be read by a general pathologist.

"Whatever pathologist is on that day will read the pathology," says Dr. Lawton. "No one hunts for a pathology specialist."

Well, maybe not. But Dr. Lawton is betting that women who have been told they have breast cancer will want a second opinion, if they know that the service is available. 

He recently opened Seattle Breast Pathology Consultants to offer second opinions to women diagnosed with breast cancer. 

For $350, Dr. Lawton, who has specialized in breast cancer pathology for a number of years, will give a second opinion. You don't have to make an appointment to see him, just have your slides sent to his office. 

Most insurance plans will cover the cost, but Dr. Lawton doesn't bill insurance directly, so you will have to pay for the second opinion directly and then ask for reimbursement from your insurance company. 

Dr. Lawton can give second opinions to women in any state in the U.S., as well as women who are in foreign countries. His Web site has information about How to get a second opinion 

Why get a second opinion? To avoid mistakes.

Your doctors will make decisions about your treatment based on the pathology report. If that report is wrong, you may not receive the right treatment for the type of breast cancer you have. 

And mistakes do happen. See Dr. Lawton's Web site for data on errors in diagnosis: Why Get a Second Opinion?

See also:

Get a Second Opinion at Diagnosis?

Who Is YOUR Pathologist?

Medical Mistakes--They WILL Happen

@ Jeanne Sather 2008. 

Who Is YOUR Pathologist?

If you're like me, you know the names of your surgeon, medical oncologist, and radiation oncologist. You may have memorized their phone numbers. 

But your pathologist?--- 

   * Do you know his/her name? 

   * Did you shop around and ask for recommendations for a good breast cancer pathologist at the time you were diagnosed? 

I didn't. But maybe I should have.

To me, the pathologist was one of those unknown names that popped up on a medical bill--I had no idea who it was. Or the name scrawled at the bottom of a very scary report ... one I could hardly read with my eyes crossing because of stress, and one I certainly didn't remember.

The other day, I learned something new about breast cancer diagnoses and pathology reports: 

Most reports, no matter what cancer center you go to, are read by GENERAL PATHOLOGISTS, not by pathologists who specialize in diagnosing breast cancer (or whatever kind of cancer you have).

As a result, mistakes are made. A realistic guess is that 10 percent of cancer diagnoses are wrong, but cancer centers and hospitals don't publish these statistics, so there is no way to know how often they make mistakes.

But doesn't it make sense to find out who will be reading your pathology slides and to confirm his or her credentials? To me, it makes perfect sense to choose a pathologist who specializes in your cancer. 

"There are always errors in medicine," says Dr. Thomas Lawton. "But you reduce the chances of an error who you have someone who specializes." 

Dr. Lawton and I met for coffee last week to talk about his work. Dr. Lawton is a pathologist who specializes in breast cancer, and until recently he was at the Seattle Cancer Care Alliance, where I received my treatment until two years ago when my medical oncologist left for Tucson. 

Dr. Lawton recently opened a new business, Seattle Breast Pathologist Consultants, to offer second opinions to women who have been told they have breast cancer. I think it's a good idea. 

Here's his contact information:

Dr. Thomas J. Lawton
Seattle Breast Pathology Consultants
(206) 860-1074
http://www.breastpathologyconsults.com  

@ Jeanne Sather 2008.   

Get a Second Opinion at Diagnosis?

I have to admit that this is something I haven't thought about until recently--getting a second opinion when you are told that you have cancer.

We routinely get second opinions from surgeons to ask which procedure is best for us.

Ditto for medical oncologists: which chemo routine would be best?

I wrote an entire section for this blog on preventing medical mistakes, without writing about avoiding errors at diagnosis. Oops.

I wondered a bit about getting second opinions when I read about the 62-year-old British man who--diagnosed with pancreatic cancer and told he would probably only live for a year--quit his job and went on a wild spending spree only to be told a year later that the diagnosis was wrong.

Ouch.

A second opinion by a pathologist, especially if you choose a pathologist who specializes in your kind of cancer, would help prevent errors in diagnosis. That seems like a good reason to take this extra step. 

See also: 

End-of-Life Spending Spree Has a Surprise Ending

Medical Mistakes--They WILL Happen

@ Jeanne Sather 2008. 

Fatal Rx Drug Errors Soar

"Fatal Rx Drug Errors Soar"--That's the headline in the latest online edition of the AARP Bulletin Today, a publication that I started reading since one of its editors interviewed me for a story that is coming out soon. 

It's also a pub that I need to be reading since I am, at 53, in AARP's demographic. I've decided not to fight it--the organization cares about issues that I care about, such as health insurance, and the ONLY person who gave me accurate answers to my questions about Medicare and Tykerb (including the people I talked to during calls directly to Medicare) was a woman who works for the AARP. She's their Medicare specialist and knows her way around Medicare Part D like nobody's business. 

Anyway, back to the story about drug errors: 

According to research done at the Unversity of California at San Diego, accidental deaths caused by people improperly taking meds rose by more than 700 percent between 1983 and 2004.

Ouch. A relative of mine recently was rushed to the emergency room when she took too much of one of her meds, so this hits close to home. 

It also hits close to home because of all the powerful drugs I take to combat my cancer. 

Read the story: Fatal Drug Errors

Read more about preventing medical mistakes: 

Prescription Drug Errors

Medical Mistakes--They Will Happen

@ Jeanne Sather 2008.

A Doctor Who Wouldn't Listen: Sandy Adds a Few Comments

After I posted Sandy's story on July 4, she wrote to me and added a few comments and clarifications. I think they're worth adding to the story.

Sandy points out that Dr. Park did not refer her to a medical oncologist when she was diagnosed with kidney cancer in the fall of 2006.

"If he would have referred me to an oncologist," she says, "I would have immediately gone through a battery of scans to see if it had metastasized. Then, they would have done a biopsy and taken care of the tumor in my hip. They would have radiated and possibly done surgery to scrape out the tumor and filled it with a bone cement. I would still have my leg and muscles."

She also says that Dr. Park refused to order a scan when she told him she was in pain because "It was protocol" to only do scans every six months.

Later, when Sandy tried to see Dr. Park to discuss his mishandling of her care, she did so on the advice of a friend who is also a doctor. She says now, "Also, my doctor friend mentioned that 'This is the reason doctors carry malpractice'...her words, exactly. That was the reason she tried to book an appointment with Dr. Park, and go with me."

But Dr. Park had left Seattle by that time, and the clinic would not give Sandy's friend his new contact information.

See: A Doctor Who Wouldn't Listen: A 'Y' in the Road

Want to start at the beginning?

See: A Doctor Who Wouldn't Listen: Malpractice at the UW/SCCA?

@ Jeanne Sather 2008.

A Doctor Who Wouldn't Listen: Malpractice at the UW/SCCA?

Last week I met with a Seattle woman named Sandy Garvin. This is her story.

BEFORE
In October of 2006, Sandy was 57 and had just retired after 28 years as a flight attendant for American Airlines. She was traveling, sailing five days a week, and enjoying the three-story house in Seattle's Wallingford neighborhood that she had bought in 2004.

"I was having a blast," Sandy says.

AFTER
Not quite two years later, Sandy's life has changed dramatically.

Sandy can no longer sail:
"I'm afraid to get on a boat," she says.

She can't travel by herself:
"I [have to] bother people now."

She can't even take care of herself and her home:
"I have to ask friends to do my grocery shopping, because I can't carry it upstairs," she says. She can't do housework, laundry, or yard work either, and can barely make it up the three flights of stairs that at one time made her home so attractive.

"I need an elevator," she says, but she can't afford one.

See also:

A Doctor Who Wouldn't Listen: What Happened?

A Doctor Who Wouldn't Listen: A 'Y' in the Road

A Doctor Who Wouldn't Listen: The Other Fork

A Doctor Who Wouldn't Listen: Finding Dr. Park

A Doctor Who Wouldn't Listen: A Personal Footnote

@ Jeanne Sather 2008.