Archive for the 'Cancer' Category

Dad — an Empowered Patient Sets a Fine Example

…. and today is his 81st birthday.

When people ask me how and why I began doing patient advocacy and empowerment work, I first tell them about my misdiagnosis, and then I tell them it’s because I learned how to be an empowered patient from my dad.

Since beginning his battle with cancer in 1986 — yes — more than 21 years ago — Dad has battled his illness every step of the way. From learning everything he could, first through the libraries, then through the Internet, to partnering with his doctors but retaining decision-making for himself, to second guessing problems with a drug he was taking, then figuring out he’d been given the wrong instructions, to doing all the same for my mom to help support her through her Alzheimer’s disease… yes… dad is the epitome of the empowered patient.

Learn more about the steps he has taken here….

Then join me in wishing him a Happy Birthday!

I’m proud of you, Dad…. with love…. from your eldest :-)

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Yanking the Cure Rug Out From Under Lymphoma Patients

In the continuing saga of two “miracle” drugs for those who suffer from non-Hodgkins lymphomas… the fifth most common cancer….

I told you six months ago about Bexxar and Zevalin, the two drugs which can treat non-Hodgkins lymphoma but were not being promoted by oncologists in private practice because they cannot, by law, administer it. That means they cannot profit by it. Remembering that American Healthcare is not about health or care, it’s about sickness and money…. we learned then that these drugs must be administered in (usually academic) medical centers because they have a radioactive component to them. So many oncologists provide infusion services themselves, but are not allowed to administer these two drugs, so they don’t tell their patients about them. I remain angry about that subject.

As if that weren’t difficult enough, there is now a new twist to this story, making it even more difficult for lymphoma patients to get this treatment they need — and deserve to have. According to the New York Times, Medicare has decided to reimburse administration of this drug in 2008 at about half the cost of the drug. Medicare made that determination, it says, based on what hospitals have been billing Medicare for the drug — but hospitals dispute that, saying they would never request reimbursement that would cost them almost $10,000 per patient! Patients need only one treatment, but it’s very expensive because the drug itself is very expensive.

Both hospitals and the manufacturers are confused as to how Medicare put together its reimbursement schedule. They believe errors have been made, and that Medicare’s numbers are wrong.

So here’s how this begins to domino….

Find the rest of this post at the new location of the Every Patient’s Advocate blog….


http://trishatorrey.com/2007/12/13/yanking-the-cure-rug-out-from-under-lymphoma-patients/

Cancer, Chemo, Emotions: It’s OK Not to be SO OK

In the past few months, I’ve blogged a few times about my admiration for those strong women on TV who are in the process of, or have transitioned through, chemotherapy.

Yesterday Robin Roberts (ABC) shared her chemo hair loss story during Good Morning America. Once again, Robin rose to the occasion, showing incredible strength, and it seemed to me, almost afraid of her own emotions — as if she had put her emotions on a shelf, perhaps to be dealt with later.

That was in great contrast with Hoda Kotbe’s (NBC) sharing of several weeks ago. Hoda shared her experience, after it was all over, but was still incredibly emotional and, it seemed to me, very real.

Then later last night, a woman named Lynn posted a comment to one of my blog posts about Robin’s experience, saying she was diagnosed a week before Robin was, and has had difficulty watching Robin’s reports, because she just doesn’t feel so strong. Her challenge is not about putting on a very public positive appearance; rather, she is challenged by paying her bills. (Thanks for writing, Lynn.)

This morning, I went to the ABC website to see what kinds of comments had been added to the story Robin shared yesterday. There are well more than a thousand comments — I read only about a dozen. But they are overwhelmingly atta-girls, and written by other strong women like Robin. So where were the comments by someone like Lynn?

And then it struck me. There was no allowance for individual differences… the role model had become not just a role model; rather, now she has become the expectation.

I do think there is an incredible amount of power and confidence (and healing) to be gained by doing anything you can to control your situation when faced with adversity. Robin shared her mother’s wisdom which I loved, “Make your mess your message.”

It worked for me. Taking control of my own situation, tightening my grip — I steered my own course and as a result, avoided chemotherapy all together.

But some people choose not to do that, and I think it’s unfair of those who are more public in nature to create a new expectation level that is impossible, and not even necessary for someone’s health. Hoda’s example was probably the best. She showed us her true and difficult emotions. But her emotions did not make her weak; instead they made her very real.

So that’s my message for today. No matter who you are, no matter how public or private your health situation, no matter what disease or debilitation it is — don’t let these public figures set YOUR standard. Don’t wonder what is wrong with you if you can’t meet their levels.

Instead, find your own strength, and transition through your treatment in your own way. If dragging yourself to work is the best you can do — that’s still fantastic! If wrapping yourself in a blanket, lying on the couch, and sipping hot chocolate makes you feel better, then go for it! If putting on a smiley face and pretending you haven’t been affected actually makes you feel better — then more power to you.

But do NOT let anyone else’s managing of their disease and treatment become your own expectation for yourself. Lynn figured out what she can handle. I figured out what I could handle. Robin and Hoda figured theirs out, too. None of us let anyone else define our expectations of ourselves. We have all just met our own expectations.

It’s up to each of us — man or woman — to figure out what our own individual levels are, and then to rise to our individual levels of expectation for ourselves. That’s patientude, too.

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From the desk of (11/10/07)…

Some miscellany from the week, not requiring blog posts on their own….fromthedeskof.gif

Heard this week from a young man in Central New York State where I live. He’s a young adult cancer survivor and has begun a social network for other young adult cancer survivors, ages 18 to 40: http://yacscny.wordpress.com . If you are a young cancer survivor, log on and see what Daniel is up to….

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Veteran’s Day is coming up — a perfect opportunity to thank a veteran or member of the military service. Regardless of your politics, we owe a debt of gratitude to these fine men and women who have worked so hard to protect our freedom. One of those freedoms is to make our own healthcare decisions — an important one!

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And speaking of Veteran’s Day — my radio show tomorrow features an interview with Dr. Ross Moquin who retired as a commander after 25 years in the Navy. He is a surgeon who treats traumatic brain injury — fascinating conversation about the procedures that were developed while he was in the Navy, and how they are being used to help civilians now, including stroke victims. You can listen right on your computer by linking here.

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announcemt.jpgAn Every Patient’s Advocate milestone this week: hit the 30,000 visitor mark on this blog since January. If you’ve been a regular visitor, I thank you — and hope you feel as if you’ve learned something. If so, will you share by making a comment? I’d love to know what has — or has not — been helpful.

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… and stay tuned for a BIG ANNOUNCEMENT soon! My reach is about to be extended big time — and you, my faithful readers will be among the first to know….

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How to Complain to Your Doctor – Part I

Several months ago, I heard from Nancy about a terribly embarrassing experience her husband had suffered during a prostate biopsy. From the beginning of the procedure through the end, he had been treated inconsiderately and rudely by the nurse. The urologist was condescending and short. And ultimately, once the biopsy was over, and wearing no clothing and with no covering, her husband was told by the nurse to get up and get dressed…. whereupon he got off the table and fainted. When he came to, he was crumpled on the floor, covered in blood, surrounded by a half dozen people, naked, and horribly, horribly embarrassed.

Nancy was appalled at the behavior of the nurse who she felt treated her husband like a second-class citizen. She also felt as if the urologist had no interest in hearing about the event. Her husband was afraid to say anything because he didn’t want lesser treatment from the urologist, whom he will have to see from now on, on a regular basis. But Nancy was afraid her husband would decide not to keep his appointments at all, based on the excessive rudeness of the nurse. He had already postponed his next appointment a few times.

Nancy’s question to me: she wanted to complain, but how could she do it so the doctor would talk to the nurse, and how could she make sure the nurse and doctor wouldn’t take it out on her husband at later visits?

There are actually several aspects to this question. Like healthcare itself, there is prevention, treatment of symptoms, and finding a cure.

Prevention would have had to have taken place long before Nancy’s husband was biopsied. Prior to ever seeing that urologist, he should have asked among his friends, others who have suffered through prostate cancer or had previously been biopsied, to find a urologist they respected and spoke highly of. That very likely would have found him a much better doctor than this one is turning out to be.

Treatment of symptoms is addressing the event itself.

Finding a cure is the walking — the taking his business elsewhere — leaving that doctor in the dust and finding one her husband can talk to.

Setting prevention aside in Nancy and her husband’s case (too late!) my choice would have been the cure. If this doctor had been their auto mechanic, or any other service provider, then they never ever would have put up with the behavior of either the doctor OR the nurse, correct? Nor should they in this case. Especially in the case of a specialty like urology…. while you won’t find them on every street corner, there are enough good urologists out there — so why not find one you can communicate with?

But Nancy wants to treat the situation. She wants to write a letter to the doctor, and she has questions about how she should approach that, what she can say that would most effectively explain her and her husband’s dissatisfaction with their experience with that doctor and his staff.

So here’s your cliffhanger…. tune in tomorrow! I’ll tell you what I’ve suggested and what’s going to happen from here.

(Link here for part II)

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Cancer and Bravery: Those Strong TV Women

I remember hearing in 1976 about Betty Rollin, a TV reporter who had written a book about her experience with breast cancer called, First, You Cry.

I was in my 20s, and a new mom. In fact, my daughter Becca turns 31 today and I remember watching book-tour type interviews with Ms. Rollin as I rocked Becca to sleep. (Happy Birthday, Becca!)

Then 8-10 or so years ago we heard about Katie Couric’s husband — dead at 40 something of colon cancer. So what does Katie do? She has a colonoscopy with TV cameras rolling so others will see that it’s not so bad — but it certainly does so much good.

Fast forward all these years — and news in the past few months about both Robin Roberts, ABC’s Good Morning America host, and now Hoda Kotbe from NBC — breast cancer, and sharing their stories to help other women.

How powerful! These four brave, strong women, sharing their experiences so others can learn, and eventually, be saved from the horrors that later stages of cancer can bring.  They share the medical, the emotional and everything in between.   And there are others, people in the limelight who use their own experiences to help others.

I feel a bit of a kinship. My disease may not have turned out to be cancer, but my reaction has been the same. To share, in hopes that others won’t suffer.

The strength of women astounds me sometimes. It’s patientude for sure. I’m proud to be counted among the strong ones.

And my very best thoughts and wishes go out to Robin, Hoda, and all you women who are out there, today, using your incredible strength to carry you through the emotions and treatment, while you hold the hands of others who must follow in your footsteps.

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One Woman, 6 Missed Diagnoses, A Lesson for Us All

You know I’m a fan of Jerome Groopman, the author of How Doctors Think.

In his incredibly eye-opening book, he tells of trying to get a correct diagnosis for his own health problem, and the fact that four doctors had four different diagnoses for him, and four differing ideas of how to treat it. As an oncologist himself, he was appalled. It spurred him on to consider the questions of how and why doctors diagnose and treat medical problems and disease.

I was reminded of Dr. Groopman when I read Carla McClain’s story in the (Tucson) Arizona Daily Star about a woman, Norma Greer, who just KNEW something was wrong with her despite the fact the SIX doctors told her she was OK. Eventually, armed with one-hour’s worth of research from the internet, Norma found a doctor out of town who diagnosed her Inflammatory Breast Cancer. She’s transitioning through treatment for it now, but most certainly, six week’s worth of IBC missed diagnoses have shortened her life.

Norma’s lesson is a lesson for anyone who “knows” something is wrong with them. We have those little voices in our heads. We know when we’re being blown off by doctors who, for whatever reason, don’t take the time to look further than what pops into their heads. We need to trust our intuition and take action.

If we don’t take responsibility ourselves, no one else — not even the professionals we’ve hired — is going to do it for us.

Sadly, we suffered through this with my mother-in-law a year ago. She was miserable with what her doctor (and those of us who don’t know medicine) thought were stomach, gastro-related problems. In fact, she died of ovarian cancer this past July — which had been at the root of her stomach upset and was too advanced to treat by the time it was finally figured out.

My own misdiagnosis was just the opposite — still a lesson, but not in the same way.

Norma — thank you so much for sharing your story with others. You are a fixer in one of the best ways.

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Breast Cancer Misdiagnosis on Today Show: Learnings

My heart goes out Darrie Eason, the woman who appeared on this morning’s Today Show who was diagnosed with breast cancer, had a double mastectomy, and learned later that they had made a mistake — in fact, she had no cancer at all.

In her case, her biopsy specimen was mixed up with another woman’s — and that woman was told she did not have cancer. Of course, for the woman who does have breast cancer, she has now had a delayed diagnosis, too.

I’ve walked in Darrie’s shoes. I’ve faced a horrible horrible cancer diagnosis, and I’ve faced all those demons about treatment choices and prognoses. Then I learned they were wrong — I didn’t have cancer. I wouldn’t wish that horror on my worst enemy.

I applaud the young woman and her attorney. Instead of filing (what Dr. Nancy Snyderman called) a “blanket of lawsuits,” they have gone back through the process to isolate the lab that made the error, CBL Path(ology) Laboratories. They have sued the lab, and have demanded a review of their processes.

CBL Path says one of their technicians took a shortcut that created the error, and that no systemic problems exist at their lab. Dr. Snyderman explained that the error that took place was a result of “batching” — meaning — instead of reviewing one biopsy specimen for one patient at a time, the tech was processing a number of specimens from a number of patients at the same time. Thus, they got mixed up.

(Pardon my cynicism, but throwing one lab tech under the bus does not fix the problem, nor does it improve the results. In fact, a system problem MUST exist, or the short cut could not and would not have been taken to begin with.)

Have you been diagnosed with cancer? or any other disease that is diagnosed based on lab work? Before you make treatment decisions with your doctor, heed Dr. Snyderman’s excellent advice so you can make sure the same kind of mix up doesn’t happen to you.

The idea always goes back to getting a second opinion. In this case, you need to get a second opinion based on your lab work. But here’s the important part — the second opinion needs to be read from the slides developed from the biopsy and NOT from the paperwork!

Like this: lab #1 creates slides from the specimen, decides what the diagnosis is, and records it on paper.

To get an accurate second opinion, ask lab #2 to read the slides to proffer their second opinion, and not just review the paperwork from lab #1.

Would this have helped me? I’m not sure. I was told two labs had independently confirmed my diagnosis — but — I don’t know whether lab #2 read the slides, or read the paperwork from my biopsy. I didn’t even know to ask the question.

So that’s why I share all this with you…. I hope if you are in a situation where your diagnosis is based on lab work that you will be assertive enough to ask that the slides be reviewed a second time.

It’s something Darrie Eason and I share — the hope that what happened to us will never happen to you.

Thanks for the lesson, Darrie. And bless you for taking your message out to those who may face such difficulty in the future.

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CNN and Misdiagnosis: Part II

CNN’s Empowered Patient, Elizabeth Cohen, provided more tips this week about what to do if you think you’ve been misdiagnosed.

My own misdiagnosis speaks to four of her five points – and if you have just a seed of a doubt about whether your doctor has diagnosed you correctly, please take Elizabeth’s advice. Here are her points and my experiences:

1. Ask for more tests. The CNN article tells the story of Nancy Keelan whose diagnosis was missed five times until she finally asked for a test her doctor had not ordered. It turns out that after three years of missing the diagnosis, Nancy had endometrial and ovarian cancer.

In my case, two labs had “confirmed” that I had lymphoma based on a biopsy of a lump removed from my torso. Ensuing CT scans and blood tests showed no sign of the lymphoma, yet my doctor insisted I needed chemo. Only by studying my own test results, which were all written in med- and lab-speak which I didn’t understand (meaning I had to look them up), did I realize that another test result was missing. I asked for that test. It turned out to be the pivotal one — the one that proved I had no cancer. If necessary, I also could have asked for a PET scan which would also have revealed I had no cancer.

I need to point out here, too, that I firmly believe that the reason the doctor didn’t look into more tests is because he wanted me to undergo chemo. He is an oncologist. Oncologists make their big money from putting people into treatment. Oncologists are the only medical doctors who profit directly from selling drugs themselves. Read more here.

2. Ask : what else might my illness be? If you have a list of symptoms and you begin reciting them to the doctor, then before you ever get anywhere near the end of the list, the doctor has already figured out what he thinks you have. Never mind that it might be wrong!

From there, he tries to fit what you have into his ideas, not fit his ideas to what you have. It’s backwards.

There is a process doctors use called differential diagnosis. Doctors consider a list of possible diagnoses, then hone in on the right one based on evidence from your symptoms to medical tests. What you want to know is what other possibilities are on that list.

In my case I was diagnosed with a disease called Subcutaneous Panniculitis-like T Cell Lymphoma. The other very obvious possibility was panniculitis — and it turns out that’s what it was. Benign. Goes away on its own. Certainly a better alternative than lymphoma.

But my oncologist was trying to start with the lymphoma and fit my symptoms to it. He asked whether I had hot flashes or night sweats — which I did — which he therefore insisted were signs I had cancer. But hey! I was 52 years old and I’m female. Hello? Geesh.

3. Don’t assume no news is good news. This is so true! Patients tell me frequently that they have been given a medical test, and since they didn’t hear back from the doctor, they assume that means there is no problem. Guess what? Results get lost all the time. The specimen or biopsy may never even make it to the lab for review to begin with. They might never be delivered back to the doctor’s office. They might get lost in the mail or emailed to a spam folder. They might fall to the floor or get filed in the circular file by accident. They might get left in the copy machine, ferheavensake.

Even if they do come back, if they seem unusual, there’s a chance they are wrong anyway! That happened to me.

And, my original biopsy results never came to me until two weeks after the biopsy. I did nag the doctors — but somehow the biopsy had gotten lost in the shuffle because it was the 4th of July holiday. (And don’t even get me started on medicine and the holidays!)

4. Assume your doctors don’t talk to one another. This is way too true. They don’t talk to each other. Period. They don’t WANT to talk to each other. Further, they avoid talking to each other – because — there is no way they can get paid for talking to each other. I do think that Elizabeth’s suggestion that you get them on the same conference call is unrealistic. First of all, most of us don’t have access to the technology. Secondly, because there is no reimbursement code for them to get paid for that kind of conversation, you need to set up a scenario so they WILL talk to each other.

Better to set up an appointments with both at the same time, then show up at one of the offices, and while you are in the doctor’s office with doctor #1, have him place the phone call to doctor #2. After the conversation, get over to doctor #2′s office so he can make a reimbursement claim for you, too. That way they might take the time to talk to each other because they can both get paid for it.

In my case, despite several requests, my oncologists never spoke to each other. Those were the days when I was innocently trying to find my way. Had I known then what I know now? I would have been far more insistent, and an even bigger thorn in the “bad guys” side than I was.

After all — it’s my body and my life, and I’ve simply hired them for their services. If they don’t do it right? Well then — I will do what it takes to make sure it’s right.

And THAT is what I call Patientude.

Thanks for the reminders, CNN.

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Dr. Pausch on Life – and PTSD

(A Note: I’ve actually started this post a few times, but then I have to grab another tissue, wipe away my tears, and start again…. this is the face of post traumatic stress…. so bear with me, please….)

At least a dozen people have sent me links to what ABC called “A Lecture of a Lifetime.”

Some background: Dr. Randy Pausch, a computer science professor at Carnegie Mellon University, has been diagnosed with pancreatic cancer and has only a few months to live. He has proof of his disease in the images of the tumors in his pancreas. Of course, it was important for me to see those — because his prognosis is the same one I received — just a few months to live.

Diane Sawyer did a wonderful interview with Dr. Pausch on Good Morning America yesterday, which you can see here.

Or you can watch the entire lecture here. I am not able to do that. I just can’t. That’s the post traumatic stress.

The big difference, of course, is that I learned my diagnosis was wrong. I was told I had just a few months to live (life turns 180 degrees) and then figured out that I wasn’t go to die at all — at least not then (another 180 degrees, back to where I started.) Listening to Dr. Pausch just brings up all those old fears and feelings and — melt down time.

I hope you will take at least the 8-9 minutes to hear what Dr. Pausch has to say in the Sawyer interview. It is brilliantly simple, and simply brilliant.

In many ways, having had the same prognosis-related experience, I count myself as one of the lucky ones. NOT because I was misdiagnosed and learned I was really just fine, but because like Dr. Pausch, I was given the rare opportunity to examine my own life, assess what I did and didn’t like about it, and make the changes needed to be all I want to be.

YOU can make your own luck in this way. If you are one of those fortunate people who can learn from other’s experiences, then listen to Dr. Pausch, and follow his suggestions.

One of them is a long-time favorite of mine: Luck is the point at which preparation meets opportunity. Be prepared for the opportunities in your life. Keep an eye open for them. Take advantage of them. Substitute “someday” for today.

Remember — everything, EVERYTHING, happens for a reason. You are reading this post for a reason.

God bless you and your family, Randy Pausch. You have made a difference in this world you will leave behind.

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