Archive for the 'Cancer' Category



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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Human Microchips? Told You So!

A few months ago I blogged about the push by the manufacturers of RFID chips, radio frequency identification computer chips, to begin implanting them in humans. At the time, I was pretty definite about the cons of the subject. I recommended against the idea in — ahem — the strongest of terms.

A report by the Associated Press (click here to access links to 90 different news outlets) states that in fact, the manufacturer, VeriChip, and the FDA may have ignored studies that linked use of the chips to higher incidents of cancer in pets and mice.

Cancer! So they aren’t just a lousy security risk, they cause cancer, too.

I’ll keep my chips on the poker table or in a snack bag, thank you very much.

Thanks to my security guru, Bob, for the heads up….

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Sad, BUT He Was a Smoker

According to yesterday’s newspaper, Gay Brewer died. If you are a golfer of a certain age or older, you’ll remember Gay Brewer as a hot shot on the PGA tour back in the 1960s. He was cool. I was a fan.

Turns out that Gay Brewer died of lung cancer.

Last week, I interviewed Dr. Leslie Kohman, thoracic surgeon from University Hospital in Syracuse, NY for my radio show. Our conversation was about lung cancer and the fact that funding from the government for lung cancer research is so much less than for other cancers, despite the fact that four times more men and women die from lung cancer than either breast or prostate cancers.

I asked her why she thought that was true.

Her explanation was one of those lightbulb moments that really makes you sit up and take note. “When you hear of someone who has contracted breast cancer or prostate cancer, you feel sorry for them. Your sympathies lie with that unsuspecting victim of those and most other cancers.

“But when you hear someone has been diagnosed or died of lung cancer, your reaction is, “Sad, but he was a smoker,’ as if he brought it on himself. It was his fault so therefore you don’t feel so sorry for him.

(Ohhhh, geeeez…. never thought about it that way.)

Dr. Kohman went on to explain about the bias against those with lung cancer because it is assumed they smoked, even when 40 percent of them never did. Most of that 40 percent, ended up with lung cancer after exposure to second-hand smoke.

I hate to think I’m so biased, but I probably have been before now. What I know about smoking from any of my friends or family who have ever smoked (thankfully, I don’t) is that nicotine is horribly addictive, and extremely difficult to get away from. Once it has you hooked, its claws are in you so tight, it’s almost impossible to get them out.

The vast, vast majority of smokers would give it up in a heartbeat if they only could. And that means it’s just not fair for me to find fault with them, or anyone else, for having lung cancer.

There are other diseases we have similar biases about, as if it’s up to any of us to make judgments. AIDs, cirrhosis of the liver, emphysema…. We also make judgments about who “deserves” to be treated — people who are obese, or unclean, or or alcoholic, or any of a number of other reasons…. Many doctors will even admit their biases in those directions.

Who among us can throw stones inside our glass houses?

We all deserve good health and good healthcare. None of us deserves a horrible disease or condition, nor have we “earned” one.

My condolences to Gay Brewer’s family and friends. He was a good man and deserved good health, regardless of the choices he made in his life.

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Kudos to Cancer Society

What’s the number #1 reason patients don’t seek medical care?  Because they can’t afford it. 

Recognizing that all the great technology, drugs, therapies and other cures in the world can’t help patients if patients can’t afford to go to the doctor for diagnosis or treatment, the American Cancer Society has decided to go out on an advertising limb to make people aware of what REALLY needs to be done….

The ACS will spend its entire advertising budget to promote awareness of lack of access to care. 

Millions of Americans don’t have health care because they can’t afford it.  Millions of additional Americans have health care, but still can’t afford the co-pays and their portions of the cost, plus millions of Americans can afford basic care, but not catastrophic care (for chronic or devastating disesases such as cancer or asthma or alzheimer’s or diabetes).

Read about it here.

What they AREN’T saying is how that improved access should happen.  No mention of a national health program, no mention of the word “universal”, no mention of expanding Medicare or patterning the VA.   To quote Larry, the Cable Guy, they just want the US to “get ‘er done!”

What they are saying is that access is, to them, the number one priority.  The ACS’s CEO John Seffrin explains it best, “I believe, if we don’t fix the health care system, that lack of access will be a bigger cancer killer than tobacco,” adding, “The ultimate control of cancer is as much a policy issue as it is a medical and scientific issue.”

I, for one, support these efforts.  Yes, I know, people will argue that the money could go to patients for testing or screening… or education about how to detect cancer.  I agree.  And for many, many years, that’s exactly what the Cancer Society has done. 

But more important, in this year prior to an election when so many just don’t understand that there’s a whole lot of lip service and not much activity to improving Americans’ access to healthcare….  Kudos to the ACS.

My donation to the ACS is being well spent.  And because of that, I’ll send more.

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Robin Roberts and Self-Advocacy

Robin Roberts, Good Morning America’s host, now in treatment for breast cancer, practices what I preach. Wise woman.

No — I take no credit for her progress. In fact, I very much doubt she has ever heard of me or my work. But in so many ways we are of a single mind, and I hope that you can learn from her experience, too.

Robin recently discovered a lump in her breast, and sought a mammogram, which turned up nothing. But she just “knew” — her intuition kicked in — and she and her doctor then sought an ultrasound, then a biopsy — and yes — they diagnosed her cancer. Surgery followed, and no doubt there will be courses of treatment beyond. But they caught it, and early, and she’s on the road, God willing, to recovery.

Intuition — trust it, act on it, follow it to its conclusions.

And the “God willing” part is important. Her faith and spirituality are in part responsible for her success so far. Not that one needs to be religious to find one’s best medical outcomes; rather, that one needs to understand the bigger picture. When we have these kinds of frightening experiences, how can we turn them into inspiration for others? Robin is doing that — with her return to the GMA set this morning, she has become that inspiration. She is taking some of her strength from the outreach of others, too. Yes, she’s practicing what I have tried to do for three years now.

Spirituality – use it for your own strength, use it to help you accept the strength of others, translate it to inspiration for others.

Chutzpah is that wonderful Yiddish term for having nerve and audacity — which is what is required in today’s healthcare environment. Sticking up for oneself, not accepting information on face value, making sure we get the very best care possible because we actively seek it, and not because we expect it will happen. Robin isn’t afraid to go that extra mile — if she hadn’t had chutzpah, then she might not have kept after her doctor for additional tests.

Chutzpah – stick up for yourself! Command the respect you deserve.

Robin Roberts is a perfect example of a woman who took her circumstance, her intuition, her spirituality and her chutzpah — and used it to save her own life.

Like I did. Welcome to our very exclusive club, Robin!

And welcome back to your on-air life. I’m pleased to see you looking so healthy and beautiful, just like you always do.

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Follow Up Post:  11/16/07:  Cancer, Chemo and Emotions:  It’s OK not to be SO OK

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