The Assertive Cancer Patient

Amgen In Trouble

The top story in the business section of today's Seattle Post-Intelligencer, the little paper that tried (harder), says that Thousand Oaks, Calif.-based Amgen Inc., the world's largest biotechnology company and the maker of the drug Aranesp, will slash jobs for the first time in its 27-year history.

What can I say but that it couldn't happen to a more deserving bunch of folks?

Let's not forget, this is the company that paid kickbacks to doctors who prescribed its drugs. Kickbacks that would have been illegal if the drug had been in pill form, but slipped though a loophole in the law because the drug is given as a shot or by IV.

This is also the product, Aranesp, that was killing people, causing congestive heart failure, strokes, and a whole range of nasty problems in sick people who already had enough to worry about.

I take this whole mess personally, very personally, because I've been given Aranesp (as well as Epo and Procrit, which are essentially the same drug under different brand names) at various times during my years of chemotherapy, and never thought much about it.

Nor did anyone on my medical team mention any problems associated with the shot, even after the risks became known last fall. My medical oncologist at Swedish Cancer Institute in Seattle prescribed a shot of Aranesp in December, because I was anemic, without mentioning the risks.

Nor did my doctor monitor my hemoglobin levels or blood pressure closely, both FDA recommendations for patients on these drugs.

The next time I was anemic, earlier this year, my doctor suggested that we try to get it under control with diet, again without telling me about the problems with Aranesp. When I found out about it on my own and asked her about it, she downplayed the risks, and certainly didn't tell me that people had DIED on these drugs.

When my anemia did not improve, and in fact got worse, I did get a shot of Aranesp, but I got it after I had researched what was going on and discussed it carefully with my doctors. Then, fully informed, I decided to go ahead and get the shot.

Aranesp is a good drug, as anyone with chemo-induced anemia will tell you, but it needs to be used more carefully, and patients need to be fully informed.

Here are the links to my earlier posts on Aranesp and Amgen:

May 11
Kickbacks on Aranesp: Boycott Amgen and Johnson & Johnson

April 17
More on Aranesp

April 9
Chemo, Anemia, and Aranesp

April 4
Whining About Anemia

A Footnote: Aranesp costs more than $5,000 a shot, at the retail (i.e., cancer center) level.

@ Jeanne Sather 2007.

Here's Another Weird One: An End-of-Life Spending Spree Has a Surprise Ending

A British man who was diagnosed with pancreatic cancer and told he would probably only live for a year went on a wild spending spree, according to press reports. The 62-year-old man quit his job, spent his savings on vacations and eating out, and gave away most of his possessions.

Then, a year later, he was told that the diagnosis was wrong.

So now he is healthy, but broke. And he plans to sue the hospital that misdaignosed him, according to Reuters.

Read the Reuters report:
Big-spending Briton wants payback for cancer scare

The BBC has the story as well. The hospital is denying that it made a misdiagnosis--even though the man was first told he had terminal pancreatic cancer, and then a year later told that he had only an inflammation of the pancreas.

'Not cancer' patient claims costs

How to Get What You Need, Part 2

I've been in cancer treatment for a long time, and when my long-time oncologist moved to Arizona and I had to look around for a new doctor, one of the most important issues for me was that I would have the same nurse every time I went in for treatment. (Except when she's out sick or on vacation, of course.)

This helps me feel safe in the treatment center, and also helps prevent mistakes.

Once I chose a new doctor, I had to change cancer centers, but my new doctor told me I could choose a regular nurse to give me my treatment. But it turned out not to be that easy. The treatment center balked at my request.

After discussing this problem with my doctor a couple of times, I experienced the Afternoon From Hell at the treatment center.

Here is the e-mail I sent my doctor afterward:

The first problem:
Zometa.

The nurse told me I was scheduled to get zometa. I told her I had gotten it the last time I was in, and asked her to check the chart and also call your office to confirm that I was supposed to get it every six weeks, not every three.

She checked the chart, and I had gotten zometa three weeks before. In fact, I had gotten it twice in a row, which is probably why I had the severe bone pain a few weeks ago that I told you about.

She called your office, and I overheard the conversation, but all she did was tell whomever answered that I said I wasn't supposed to get zometa that day. She did not ask them to check with you, and I don't believe they did.

So my first question is: How often AM I supposed to receive zometa? Dr. L had me getting it every six weeks, and I assumed that we were continuing with that schedule.

Second problem:
My nurse. We've talked about why I need to have the same nurse each time I go in for treatment, and I believe that you requested that Moire handle my treatment. Moire was there, but the treatment center did not assign me to her.

I can understand that the treatment center feels it makes their job more difficult to honor requests like this, but I would appreciate it if you would speak to them directly and explain that you want me to have the same nurse every time I come in, unless that nurse is not working that day.

This is a medical necessity for me. My anxiety is going through the roof when I am in for treatment. When I have the same nurse, and we have a chance to develop a relationship, then I feel safe and can relax during treatment.

Third problem:
The treatment center was extremely busy, and the nurses were run off their feet and harried. Every chair was taken, and I waited a long time before going back for treatment and then an extremely long time in the chair.

Please suggest a time that would be less busy. Again, this kind of situation makes me very anxious, and it leads to mistakes. Would early Thursday morning be a better time for me to come in? I am perfectly willing to do that.

The time thing: Last time, the person who scheduled me said she could only get me in to see you at 12:40 and in the treatment center at 3, which meant a long wait in between. She did suggest that I go to the treatment center early, in the hopes that they could get me back earlier if I was there.

So I sat and waited in the waiting room at the treatment center for almost two hours after checking in, and did not go back until 3. Then, the pharmacy somehow lost my orders and did not mix up my drugs, so I sat in the chair for another hour before we actually started the drugs.

I am still not sure that the nurses did the double-check on both of my drugs, I believe they only did the first one, the Herceptin.

Then, when my nurse started the second drug, Avastin, which runs for half an hour, she mistakenly did not switch the pump over from the saline, so I sat and received saline for half an hour. She didn't realize her mistake until the pump beeped, so I had to sit there for another half an hour to get the Avastin. She felt really badly, and I wasn't mad at her--it was a result of how busy everyone was.

Total wasted time: 3 1/2 hours.

I was completely wrung out by the end of the day.

SUMMARY:
--Please confirm my treatment schedule for zometa, and put it in my chart.
--Please discuss my needs with the treatment center. I don't care so much which nurse I get, although I really like Moire, but I need the same nurse every time.
--Please suggest a calmer time for me to come in for treatment and have my next couple of treatment appointments made at that time. Early Thursday would work best for me of the three days you are there, but I am also willing to come in Friday afternoons.

I will call you a bit later to discuss all of this, but I thought it was easier to put it in writing since there is a lot of info here. '

Thanks. I really like having you as my doctor, but I cannot deal with the situation in the treatment center. It is out of control.

Jeanne

My doctor--who I really like--discussed my concerns with the person who is in charge of the treatment center, and then we talked about it.

I then had a very cordial phone conversation with the head of the treatment center, and she offered to have my care handled by a team of two or three nurses. I repeated my request for having one nurse assigned to me, unless that nurse was not working on the day I went in. She agreed.

I also decided to go in first thing in the morning, when things will not be so harried, and to take my iPod with me to drown out other people's conversations. This was an issue I didn't bring up with my doctor, but overhearing other people's stressed and anxious conversations increases my own anxiety. So I need the buffer of the iPod.

And on the question of making sure the double-check is done on my drugs, I am taking the advice of my friend Jill, who also has metastatic breast cancer, and I will ask to see the IV bags before they are hung and will check the drug names and doses myself.

So we'll see how things go tomorrow, when I am in for treatment again, at 8 a.m. It will be an adjustment, as I usually sleep till 9 these days, but worth it if I can go in when things are calm and the nurses are not run off their feet.

Read more:

Medical Mistakes—They Will Happen

Chemotherapy Errors

@ Jeanne Sather 2007.

How to Get What You Need

When you have cancer, how do you get what you need from the doctors, nurses, technicians, and others who hold your life in their hands?

The answer is remarkably simple: You ask.

You ask politely, but persistently, and you keep asking until you are satisfied. It really is just that simple, but that doesn't mean that it is all that easy for many of us to do.

It becomes easier once you have trained yourself out of the habit of being a "good patient." Good patients do what the doctor (or nurse or pharmacist or whomever in a white coat) tells them to.

But being a good patient can leave you angry, frustrated, anxious, depressed ... and with no outlet for these feelings (other than the friends and family who may listen to you rant, but THEY can't fix things). Bottled up negative emotions can hurt your health.

And being a "good patient" can kill you.

I have a story to tell that illustrates what I'm talking about, and it's a story with a happy ending for a change, but I'll leave that for tomorrow. I need to round up all my pets, pop out my contacts, and head to bed.

@ Jeanne Sather 2007.

Medical Mistakes—They Will Happen

I wrote this post back in October 2006, and I'm featuring it at the top of my blog because it remains one of my most popular posts--readers are concerned about avoiding mistakes in their cancer care. As they should be.

Last Thursday, I picked up a refill prescription for Xanax, which I take for anxiety, at my cancer center in Seattle.

The next morning, as I lined up the six or seven bottles of prescription drugs I take each day, I thought I had been given the wrong drug.

The label said, “alprazolam, Take one or two tablets every six hours as needed for pain.” Well, as I mentioned, I take Xanax, and it’s for anxiety, not pain. I had to go online to double-check that I had indeed been given the correct drug. The bottle should have been labeled with both the generic (alprazolam) and brand name (Xanax), and the appropriate indication—anxiety—should have been listed.

This is not the first time my pharmacy has made a mistake. Another time, one of my prescriptions was mislabeled. The generic name was correct, but the brand name was wrong. I took the bottle back after I discovered the mistake (while trying to figure out how much I was supposed to take before an MRI), and the pharmacy staff took the bottle back and relabeled it.

But then—and this is the part that rankles, even more than a year later—a pharmacist came over and said to me in a flip tone of voice, “Sorry about that.”

Sorry about that? Not good enough.

If you have a chronic medical condition—which includes many, if not most, cancer patients—get used to the possibility that what happened to me could happen to you. No matter how carefully you choose your doctor and your cancer center or hospital, mistakes happen. Doctors, nurses, and other medical personnel are human (and often over-worked or sleep-deprived), and they sometimes make errors.

Odds are you will be the victim of medical mistakes, large and small, and that your hospital or cancer center will deny the mistakes ever happened or make light of them.

“Fixing America’s Hospitals” an article in the Newsweek issue dated today, October 16, says the most important hurdle for U.S. hospitals is improving patient safety. This year, according to Newsweek, medical errors harm at least 1.5 million people and cost some $3.5 billion a year. A sidebar by Dr. Lucian Leape, of the Harvard School of Public Health, suggests that doctors and hospitals need to “disclose, apologize, and explain.”

I couldn’t agree more.

What I Do
This is how I protect myself from medical errors:
* I double-check everything.
* I keep notes and lists.
* I ask questions.
* I read the information sheets my doctors, nurses, and pharmacists give me.

This is not paranoia. Nor does it imply a lack of trust or confidence in the people who are treating me. Rather, it is a pragmatic attitude that acknowledges that medical mistakes do happen, and that I want to do what I can to make sure they don’t happen to me.

Other Mistakes
Last Thursday was a bad day for errors at my cancer center. In addition to the mislabeled prescription drug, the woman who drew my blood at the lab did not follow the proper procedure for identifying me. All patients have a green card embossed with their name, date of birth, and patient ID number. When I check in for a blood draw, I turn over this card to a staff member.

Then when the technician calls me back, he or she is supposed to ask me to give my name, spell it, and give my date of birth. Only after checking what I say against the card should the tech poke me and draw my blood.

This woman, however, already had the needle in my arm and the blood flowing into the first test tube before she said, hurriedly, “Oh, your birthday is eleven, seventeen, fifty-four, right?” And that was it.

She had the right patient, so no harm done, but this is not the way it’s supposed to go.

One other time, a lab tech drew my blood using the wrong type of test tube, so I had to return to the lab and have it redrawn. Again, a small mistake, and one that did me no harm, other than an extra needle stick. But it illustrates a carelessness that makes me less than comfortable.

In the Chemo Room
It’s hard to ignore newspaper headlines about cancer patients dying after receiving the wrong chemo drug, or the wrong dose of the “right” drug, so I am especially vigilant about mistakes in the Infusion Room, where I get my chemotherapy treatments.

When I check in for chemo, my green card is used to print an armband with my full name, date of birth, and patient ID number. I wear this until it is time to go home.

Once I’m settled in my chair and the chemotherapy drugs have arrived from the pharmacy, two nurses check each drug against my chart and against my armband—a check intended to prevent mistakes.

Just a few weeks ago, the chemo nurse, who was not the nurse I usually see, forgot to do the safety check. She was hooking up the drug when I said, "Did I miss it? Did you do the double-check?" She quickly apologized and called in another nurse to do the check.

In my experience, mistakes are more likely to happen when you are not treated by the caregiver you usually see.

Another time, also when my regular nurse was not available, the nurse assigned to me had not ordered one of the drugs I was supposed to get.

The orders apparently were not in my chart. If I had not been paying attention, or had not known what drugs I was supposed to receive (I keep a list in my daytimer), and had not spoken up, the nurse would have had no reason to double-check and I would not have gotten the drug.

Would this have harmed me? Probably not. But it was a mistake, one that I caught by knowing which drugs I am supposed to receive and on what schedule.

During Surgery
As you can imagine, it is harder to be vigilant about medical mistakes during surgery, because you are sedated. (But there are some steps you can take to protect yourself; see the links below.)

Several years ago, two errors occurred during a day surgery to place a port under the skin on my chest so that I could receive chemotherapy with a drug called Navelbine (generic: vinorelbine), which can damage tissues if given directly into a vein.

The doctor placed the port on the right side of my chest—the same side as my mastectomy and later radiation therapy. When I got home after the surgery, I read the little booklet provided by the port’s manufacturer and found that it is not supposed to be placed in tissue that has been radiated.

I asked my medical oncologist (not the doctor who placed the port) about this at my next visit, and he said he thought it was OK. To this day I’m not sure if he said that because the port was already in place, or because he really thought it was OK to put it on the side that had been radiated, despite the manufacturer’s clear instructions.

Regardless, I had a string of five or six frightening infections with the port, each one requiring at least one course of antibiotics.

The other thing that happened with the port was even weirder. I have a note in my chart that says I am allergic to latex. Well, the team that placed my port did not notice this note until after my surgery (nor did they ask me about any allergies before the surgery).

Later on, while I was still at the cancer center, a staff person came looking for me to make sure that I was OK and had not gone into shock. I was woozy still from the anesthetic when he found me, but I do remember him saying that my chart mentioned a latex allergy and they had just implanted in my body a port made partly of latex.

This could also be a reason for the string of infections I had with the port—the latex in the device kept irritating the tissue around it. Even though I tried to follow up on this mistake, I never got a clear answer and I still don’t know how the error occurred.

There is no neat, quick wrap-up to this story, and no happy ending.

I have been living with cancer for eight years. All of the mistakes described above—which are all the ones I know about in my care—happened during the past three. It kind of makes me wonder what happened during the first five years without my knowing it.

The good news is I am still alive, and still enjoying life. To help keep things that way, I maintain my vigilance in every medical situation.

Read more:

Cancer: Guarding Against Medical Mistakes

Chemotherapy Errors

Mistakes During Surgery

Radiation Therapy Mistakes

Alternative Therapy Errors

Prescription Drug Errors

Keeping Medical Records

Medical Mistakes--Overwhelmed?

@ Jeanne Sather 2006

Cancer: Guarding Against Medical Mistakes

If you have cancer, you probably worry about someone making a mistake in your care. It’s hard to ignore newspaper headlines about surgeons removing the wrong leg or breast by mistake, or stories about cancer patients dying after receiving the wrong chemotherapy drug.

Unfortunately, you are right to worry. Hospitals can be dangerous places (for the germs that live there alone), and mistakes like these happen all too frequently.

A few years ago, assertive patients starting writing messages such as “not this one, dummy” on their bodies before surgeries like mastectomies. Now, some hospitals provide the pen and ask surgery patients to label the body part that is to be cut—or the one that should NOT be.

I am especially concerned about a recent study that shows that doctors, nurses, and other staff at hospitals often do not report mistakes they see their coworkers make. The study, released in January 2005, was co-sponsored by the American Association of Critical-Care Nurses and VitalSmarts, a California consulting firm.

The mistakes the researchers documented were not trivial: They included a nurse who watched a colon surgery patient die after the nurse failed to convince a doctor who intimidated her that the patient was in trouble.

Not only were the mistakes documented in the report serious, they were also shockingly common: Eighty-four percent of doctors and 62 percent of nurses and other care providers said they had seen coworkers take short cuts that could endanger patients. And 88 percent of doctors and 48 percent of nurses and other providers said they worked with people who showed poor clinical judgment.

The fact is, if you have a chronic medical condition—which would include many if not most cancer patients—the odds are high, perhaps as high as 50 percent, that you will be the victim of a medical mistake, large or small. This includes patients, like me, who have chosen their doctors and hospitals carefully and are being treated at reputable, leading cancer centers. Mistakes happen. Doctors, nurses, and other medical personnel are human (and often over-worked or sleep-deprived), and they sometimes make errors.

Certainly some “bad apples” are allowed to continue to practice medicine after repeated or serious mistakes. Gag orders prevent people who win medical malpractice suits from talking about their cases, and hospital policies are often designed to keep mistakes by their doctors quiet. In your spare time, if you have the energy, consider lobbying for changes in the law that will make it easier for cancer patients (and others) to get the information they need about dangerous hospitals and doctors with histories of malpractice suits and drug or alcohol abuse problems.

But for now, back to you and what you can do to protect yourself here and now.

This is my position on protecting myself from medical errors: I double-check everything. I keep notes and lists. And I ask questions. This is not paranoia. Nor does it imply a lack of trust or confidence in the people who are treating me.

Rather, it is a pragmatic attitude that acknowledges that medical mistakes do happen, and that I want to do what I can to make sure they don’t happen to me.

Read on for suggestions on how to prevent mistakes during various types of cancer treatment.

@ Jeanne Sather 2006

Chemotherapy Errors

As of this writing, I have received chemotherapy by infusion (IV) for more than five of the past eight years. That’s five or six different series of chemotherapy treatments, with the following drugs, either alone or in combination: Adriamycin (generic: doxorubicin), Taxol (paclitaxel), Herceptin (trastuzumab), Zometa (zoledronic acid), Zolodex (goserelin), Navelbine (vinorelbine), and Avastin (bevacizumab). I've also had a couple of oral chemo drugs, including Cytoxan (cyclophosphamide).

At present, I am receiving treatment with two targeted therapies, Herceptin and Avastin, which have fewer side effects than conventional chemotherapy drugs like Taxol. And I take oral Cytoxan every day.

So I’ve had a lot of experience with chemotherapy, and it no longer frightens me. But that doesn’t mean I sit back and space out while my nurses are hooking me up to the IV pump, either.

This is what I do: Whenever I start a new series of chemotherapy treatments, I get the details from my medical oncologist and I write them down. I have a page in my date book where I list:

• The name of the drug (both generic and brand name)
• The dose
• How often I am to receive the drug
• How many treatments in total I am supposed to have
• How long each infusion is supposed to run
• The name and dose of any premedications (or “premeds,” the drugs I take before chemo to help with side effects), and
• Any other drugs I may be getting, for example drugs to boost my red or white blood cell counts.

My doctor or his nurse also gives me a printout on any new drug that lists all sorts of information, including side effects to watch for. I read these—even though they are pretty scary—and I save them for future reference.

I receive my treatment at a cancer center in Seattle as an outpatient. Whenever I check in for treatment, I get an armband that is printed with my full name, date of birth, and patient ID number. Once I’m settled in the chair or bed and the chemotherapy drugs have arrived from the pharmacy, two nurses check each drug against my chart and against my armband.

This is a safety check, and I pay attention while it’s going on. If something doesn’t sound right to me, I pull out my notebook to see what I have written down. And if I have any doubts or questions at all, I ask my nurse. If there is a question the two of us are unsure about, we page my oncologist’s nurse and check it with her.

Many drug names are very similar, and doctors and nurses are not consistent in the names they use. Sometimes they use the generic name and at other times, or for other drugs, they will use the brand name or a shortened form of the name.

The first time I received chemotherapy, my medical oncologist told me I would be getting a drug called doxorubicin, but the nurses in the infusion suite were calling it “adria,” short for the brand name, Adriamycin. This confused me, and several times I said, “Don’t you mean doxorubicin?”—until I finally got it straight.

I have one nurse who is assigned to me as my “primary nurse” for chemotherapy treatments. This is a great system, and if the hospital where you are getting chemotherapy doesn’t do things this way, you should ask them to.

My nurse and I have a relationship. We know each other. She knows about my kids and what is going on in my life. She knows the ins and outs of my treatment. And she knows my veins (no small thing when you are getting poked often).

When I go in for treatment and my primary nurse is taking care of me, I have a sense of safety and security that I don’t have with someone else, even though I know and like many of the other nurses.

Mistakes are more likely to happen when you have a substitute. Just recently, if I had not spoken up I would not have gotten one of the four drugs I was supposed to receive, because the orders were not in my chart. If I hadn’t been paying attention and had not said something, the nurse would not have known and I would not have gotten the drug.

Would this have harmed me? No, probably not. But it was a mistake, one that I caught by knowing which drugs I am supposed to receive and on what schedule.

And just a few weeks ago, my chemo nurse, who, again, was not my regular nurse, forgot to do the safety check with a second nurse. She was hooking up the drug when I said, "Did I miss it? Did you do the double check?" She quickly apologized and called in another nurse.

In addition to the formal safety check of the drugs, I pay attention to procedures. If I don’t have my regular nurse, the substitute might do things differently, which may be fine—but I always ask if something’s not the same as usual.

Another check you can do is to pay attention to the color of the drug (most are clear, but doxorubicin is red, for example), and look at how full the bag is at the beginning—does it look the same as usual? If not, say something.

@ Jeanne Sather 2006

Mistakes During Surgery

When it comes to surgery, many of us probably don’t worry about the surgical errors that are the hardest to prevent. These include having the wrong surgery, incomplete surgery, unnecessary surgery, or failing to have surgery when it’s needed. Getting a second and even a third opinion is probably the best way to guard against these problems.

One problem with trying to prevent a mistake once you are in surgery, is that, most likely, you will not be awake to keep an eye on what is happening. I have a friend who recently had surgery in Mexico, and she took along another friend who is a registered nurse. Her surgeon allowed the nurse/friend into the operating room to watch, which was great, but this is not something that is likely to catch on with cancer surgeons in the United States.

The best way to prevent a mistake during your cancer surgery is to choose your surgeon carefully.

• Choose a surgeon who has the right training.
If you have a gynecological cancer, for example, your surgeon should be a gynecologic oncologist, a doctor with years of specialized training in the diagnosis and treatment (including surgery) of these cancers. If you have prostate cancer, your surgeon will probably be a urologist who has advanced training in prostate cancer surgery.

• Choose a surgeon who has adequate experience.
You want a surgeon who frequently performs the procedure you need, and who has done it enough times in his or her career to be really proficient. Ask your surgeon how many of these surgeries he or she has done and how many he or she does each year. For prostate surgery, the answers should be at least 150 in total and at least 15 per year, according to Dr. Paul Lange, chairman of the Department of Urology at the University of Washington and the author of "Prostate Cancer for Dummies."

•Ask for referrals.
This is the time to cast your net widely. Ask for referrals from your doctor and from other people who have had cancer surgery. Look up the surgeons you are considering on the Web. See what research they have published. See what people on cancer bulletin boards are saying about them. Weigh this information based on how reliable it is—the opinion of the woman who happened to be standing behind you in line at the grocery store should have less weight than the opinion of your family doctor, for example.

•Interview several surgeons.
Once you’ve gathered and evaluated referrals, you are ready to interview surgeons.

Make an appointment specifically for this purpose. During the interview, ask your surgeon if he or she will be performing the surgery, or if it will be done by a resident (a doctor in training) under the surgeon’s supervision. Personally, I don’t want a resident practicing on me; I want the surgeon I have carefully chosen. But I am OK with a resident assisting during surgery.

You might ask, “Are any residents going to be involved in my surgery, and, if so, what will they do?” If you do not feel comfortable about what the residents will be doing, say so.

Typically, at a teaching hospital, such as a university hospital, residents are part of the surgery team. If you absolutely do not want residents involved, one surgeon suggests, then you may want to reconsider whether you want to get your care at a teaching institution.

Once you’ve chosen a surgeon you like and trust, you can help prevent errors by making sure that you know about all preparations you are supposed to make before surgery, including discontinuing certain medications. Get these instructions in writing, and make sure you understand and follow them.

Also get clear instructions for what you can expect after surgery. These may include limits on what you can eat, how much weight you can lift, or how soon you can have sex. These instructions should include some idea of when you can return to work or when you should feel “back to normal.”

If you have a clear understanding of what is supposed to happen before, during and after surgery, you will be able to question anything that doesn’t seem right. Don’t be afraid to ask “stupid” questions. And don’t be afraid to call your surgeon’s office even if your question can’t be articulated beyond, “Something doesn’t feel right.”

With surgery, because you probably will be under anesthetic for the procedure itself and woozy afterward, you may want to have someone with you to act as your advocate. This person should have copies of all the instructions you have been given and should be prepared to discuss any problems with your doctor or nurses.

Then, go ahead and mark your body with a pen, if you like. Dr. Ben Anderson, a breast cancer surgeon at the University of Washington Medical Center, says, “I am fine with the patient's writing on herself to verify the laterality of the operation. There is no harm, and [there is] potential benefit for everyone. In our hospital, we have a detailed check and re-check system in the preoperative holding area and in the operating room, including a required ‘time-out’ where the team stops to verify patient identification, operation, allergies, and preoperative drug administration.

“In addition,” he says, “the operating surgeon is required to put his or her initials on the patient to mark the correct operative side. I do not think we can be too careful.”

To read more:
http://www.assertivepatient.com/2006/09/why_be_assertiv.html

@ Jeanne Sather 2006

Radiation Therapy Mistakes

Radiation therapy is commonly used to treat many different types of cancer. The radiation may be external, using a machine that looks much like an X-ray machine, or internal, using radioactive “seeds.” This is called brachytherapy.

I have had radiation therapy twice: The first time was when I had a local recurrence of my breast cancer in 1999. For six and a half weeks, five days a week, I had external radiation to the right side of my chest, including the lymph nodes under my collarbone. I had chemotherapy with Taxol at the same time. (See Chapter 14 of Jeanne's Diary.)

The second time was when my cancer metastasized to my bones. The largest tumor broke my upper right arm, and in early 2002 I had a series of radiation therapy treatments to kill the tumor. Again, I had chemotherapy at the same time.

Somehow, I have never found radiation therapy to be as frightening as chemotherapy. Mostly, I find it boring. But radiation can harm surrounding tissues, and it can increase your chances of having another cancer in the future.

If you have radiation therapy, most likely your treatment will be planned by a radiation oncologist, and the treatments will be given by trained technicians. You will see your radiation oncologist regularly while you are receiving radiation therapy to monitor your progress.

You should choose a radiation oncologist who is a specialist in treating the kind of cancer you have. Then, as with chemotherapy, you should have your doctor explain the treatment carefully. Take notes.

You should know:

• How many treatments you can expect to have
• How often you will be treated
• How long each session should last
• What the radiation dose is supposed to be
• What side effects to expect
• What to do if you experience certain side effects, like badly burned skin.

Also, as with chemotherapy, you should become familiar with the routine of your radiation therapy treatments. Know what the set-up involves (you need to be in exactly the same position each time), how many angles you will receive radiation from, and how long each zap of radiation should last. If your technicians are doing something differently from the way they usually do, ask them why.

@ Jeanne Sather 2006

Alternative Therapy Errors

If you are considering using naturopathic or other alternative therapies to treat your cancer, you should choose your alternative health provider with as much care as you would choose a surgeon or oncologist.

Choose a naturopath who has training and experience in treating cancer patients--you need more than a vitamin salesperson. Ask your friends, family, and medical doctor for referrals. Once you have a short list, interview several naturopaths to find the right one for you.

If you want to use alternative treatments as complementary treatments along with chemotherapy, radiation, or other mainstream cancer treatments, then you should coordinate between your oncologists and your alternative providers to keep both sides completely informed about what you are doing.

Not to do so (and I know several cancer patients who have used naturopathic remedies without telling their medical oncologists) can be dangerous. Consider any supplements, herbs, or vitamins you are taking to be drugs. Make sure your medical doctor and your pharmacist know what you are taking. Not everything “natural” is safe.

Don't be surprised if you find medical doctors who do not want to work with naturopaths, or naturopaths who speak with contempt of mainstream medicine. There is a lot of animosity between the two groups. Keep looking, and you will find doctors in both camps who can and will work together.

@ Jeanne Sather 2006