Archive for the 'Intuition' Category

Smoking and Botox — Wishful Thinking and Common Sense

The FDA came out with a report on the negatives of botox injections…

It’s like deja vu, isn’t it?  Where is common sense?

Read this post at About.com, Patient Empowerment.

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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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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Blink, Intuition, Gut Reaction: Spot On

I don’t write often on trusting one’s intuition for making health care decisions.  I should do it more often.  Here’s why:

A few years ago I read Malcolm Gladwell’s Blink — an analysis of how we use our unconscious, our intuition, and how accurate it turns out to be.  At the time I remember feeling almost vindicated — which I’ll explain more about in a minute.

Cited in Blink was a German social psychologist, Dr. Gerd Gigerenzer, who has done studies on intuitive thinking on ordinary people like you and me.  I found an article in this morning’s New York Times about a book Dr. Gigerenzer has now written called, Gut Feelings: The Intelligence of the Unconscious.

In his book, Dr. Gigerenzer offers a basis for gut feelings — those made-in-a-flash decisions or judgments we make based on…. what?  Often we don’t know.  Dr. Gigerenzer suggests gut instincts are based on cues in our environment, and our ability to subconciously recognize them comes from heuristics which are built in, evolutionary abilities in the human brain. In most situations, when people use their instincts, they are heeding these cues and ignoring other unnecessary information.

So what’s the question here? 

We all experience instinct and intuitive feelings, but our society doesn’t seem to value them as decision-making tools. Dr. Gigerenzer cites Benjamin Franklin’s account of rational decisionmaking — weighing written lists of pros and cons as an example of that devaluation.

Personally, I think there are two other reasons.  First — I think we are all too interested in covering our backsides.  We live in a litigious society, one that needs paperwork and evidence to prove every decision is right.  Robbed a bank?  You can’t be convicted without the evidence, even if everyone “knows” you did it.  Need a mortgage?  The mortgage broker won’t give you a mortgage based on instinct;  he’ll need all the paperwork to back him up.  Think your golf has improved?  You’ll have to pull all your scorecards together and make a chart to see if your handicap is lower than it used to be.

But more important than stockpiling evidence is the question of trusting our intuition.  We may have those flashes of ideas, but do we trust them?  It’s the question of trust that made me feel vindicated when I read Blink.

Like most of us, I grew up making those rational decisions that require lists of pros and cons.  In particular, I remember trying to decide what college to go to.  On paper, one of them seemed better than the other, but in my heart (or, based on intution) I wanted to to Bucknell University.  I went with my gut instinct and the decision turned out to be the right one for me.

More important to this discussion however, was the way I used — then TRUSTED — my intuition when it came to my cancer diagnosis.  I just KNEW the pathology reports were wrong.  I just KNEW I didn’t have cancer.  And I set out to prove it.  And I was right

Had I not trusted my intuition, I would have undergone chemo.  One can only imagine what the fallout would have been from unnecessary chemo.

There is no downside to trusting one’s intuition about one’s health, as long as that intuition takes you in wise directions.  For example, “knowing” that you don’t have enough information to make a decision will send you in the direction of researching further, getting a second opinion, asking relevant questions, or finding support from other patients.  “Knowing” you are experiencing side effects that are dangerous, as opposed to accepting them because you think they are just part of taking that drug, will send you back to the doctor’s office to review whether you are taking the right drug, or taking it in the right dose.

The only time trusting your intuition about your health can be bad is if you mix it up with wishful thinking.  “Knowing” you don’t need to see a doctor because that pain that’s shooting down your arm can’t possibly be a heart attack…. or “knowing” that your dizziness and drooping mouth can’t possibly be a stroke — that’s not trusting your intuition — that’s wishful thinking and it may cost you your life.

Trusting one’s intuition to get the best care possible is a real, bonafide, patient tool.  Use it.  Use it wisely.  You’ll be healthier because of it.

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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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Isabel’s Misdiagnosis May Save YOUR Life

Jason Maude wants to save your life. 

He lives in the UK where healthcare is a given, like a public education.  If you are a citizen, you get healthcare.  But remarkably, stories of misdiagnosis are identical to those in the US.  It seems that regardless of whether healthcare is an entitlement or insured, misdiagnosis still happens.

In 1999, Jason’s daughter Isabel, then age 3, was misdiagnosed and nearly died.  From a “normal” case of chicken pox, she developed toxic shock syndrome, then necrotizing fasciitis, a med-speak term for flesh eating bacteria.  But the doctors didn’t see it.  They didn’t diagnose it until it was almost too late.  Instead, because Jason and his wife trusted their intuition, and relentlessly pursued the REAL answers, Isabel eventually got the diagnosis and care she needed.  Today she is a healthy, happy 11-year-old because of her parents’ diligence.

Now suppose your child almost died – or DID die — from a misdiagnosis.  How would you feel?  What would YOU want to do?

Most of us would be beyond angry, and rightfully so.  Most of us would make sure we did everything we could to punish those providers who had killed, or almost killed our children.

But not Jason and his wife.  Instead, they decided to do something to make sure nobody else’s child, and his/her parents and loved ones, would ever have to live through such a horror.

How? Jason approached the doctor who had been in charge of Isabel’s care — the one who was ultimately responsible for Isabel’s corrected diagnosis — and suggested the two of them collaborate on putting together a system for doctors worldwide to use to make sure all diagnosis possibilities were being considered for any given medical problem.  The doctor, Joseph Britto, MD, readily agreed. 

Since then, they’ve made it happen.  A huge database of every diagnosis framed by all its possible symptoms — and vice versa — is available to medical centers and doctors’ practices worldwide.  It’s being used by the likes of Yale-Newhaven Children’s Hospital, the University of Virginia Health System, and other esteemed — and very wise — hospitals and doctors, both in the US and the UK.

Yesterday I had the honor of speaking with both gentlemen.  I think we could have talked for hours and hours because we have so much in common and we agree on so many fronts!  Jason and I have almost identical advocacy stories, of course.  We agreed that turning our anger into something positive for others is incredibly cathartic. 

And I learned, and confirmed so much!  Such as:

  • Did you know misdiagnosis is the 4th leading cause of death in the US?
  • Did you know most doctors jump to judgement about your diagnosis and frame it so tightly in their minds that they dismiss other possibilities?  (Just ask Jerome Groopman.)

So as you can imagine — I am ecstatic that this system exists now.  I wonder whether it could have saved me from my misdiagnosis odyssey?  One can only hope.

And I do have a few questions about its use — one that will remain unanswered for awhile, and one that was answered, like the answer to a prayer.

Question One:  is there any way to overcome the objections of the the way-too-many-doctors who see the use of such a system as stepping on their toes, to transcend their egos for its use?  If I try to answer this question myself, I think the solution will lie in showing them it can save them money because there will be fewer lawsuits (yes — money — the root of all healthcare in the US).  Please note I haven’t mentioned that they would be interested in using it to save lives.

Question Two:  is there any way patients can influence use of the Isabel system?  or use it themselves?

Both gentlemen were quick to tell me about the beta-testing of a system for us patients to use — the Isabel Symptom Checker — that we can use and share with our doctors.  Yes!!

Now if you read my work regularly, you know I don’t, in general, support the use of online symptom checkers.  I think the ones that currently exist are more problematic than helpful.  You’ll either decide what your problem isn’t important enough to bother the doctor (and it might be life threatening!) or you’ll decide you’re dying of a rare disease (when you aren’t very sick at all.) 

So why would I support the use of an Isabel-related system for consumers?  Because it is intended entirely to COMPLEMENT your work with your doctor — not replace the doctor’s opinion.  It is intended to help you and your doctor expand lists of possibilities — differential diagnosis options — not get in the way of your work with your doctor.

Until the patient-consumer version is available?  Patients who are lucky enough to live in areas where hospitals or doctors currently use the system can choose to see those doctors.  Find the most current list of Isabel users here.

So once again, my belief that everything happens for a reason is confirmed.  I’m so sorry Isabel and her parents suffered as they did.  But I’m thrilled that Jason took his anger in the direction he did.  As the Isabel Diagnosis System saves more lives, others, too, will realize what a blessing their odyssey was, too.

I’ll keep you, my loyal readers, posted on the launch of the Isabel Symptom Checker.  It’s most definitely an idea that’s time has come.  Patient Empowerment at its finest.

Learn more:

Link here to the Isabel Healthcare System website.

Link here to an article in Forbes Magazine.

Link here to an article in the New York Times.

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Who Benefits from YOUR Medical Care?

You see a surgeon, and she tells you you need surgery.

You see an orthopedist and he tells you you need physical therapy.

You see a chiropractor and she tells you you’ll need at least a dozen treatments.

You see an oncologist and he tells you you’ll need chemotherapy or radiation.

What’s wrong with these pictures? 

Maybe nothing. 

Or maybe everything.

What may be lacking with their recommendations?  Objectivity.  You see, the surgeon doesn’t make any money until she cuts.  And the orthopedist may not make money until you spend time in physical therapy.  And the chiropractor doesn’t make money until she treats you.  And the oncologist makes lots more money when you get treated in his or her center.

And it’s entirely possible that the only beneficiary of their treatment recommendations will be their wallets.

Don’t believe me?  Then you haven’t heard the stories I’ve heard that would make your toenails curl.   And you aren’t objective either.

When we are sick or hurt, scared and anxious, it’s very difficult to be objective in making medical care choices.  Desperation does funny things to our brains.  That’s one reason patients avoid second opinions.  A provider holds out any carrot of hope, and we’ll jump at that instead of being more rational, stepping back, and pursuing other opinions.

And desperation, fear, or even mere confusion, can cause us to believe everything we are being told when, in fact, it would make more sense to examine the objectivity of the recommendations.

I’ve interviewed a cardiologist a number of times about this very subject.  He tells of patients who, in the middle of a heart episode, get rushed to the emergency room.  A stent is inserted into an artery to clean out a blockage.  The provider, who makes his money by doing angioplasties and inserting stents says, “Mr. Smith, we can see a few more potential artery problems on the films we just took of you — why don’t we insert a few more stents while we are here?  Is that OK?”  And the patient concedes to the additional work, WHEN, in fact, the patient would be better off simply taking anti-clogging medicine to make sure ALL his arteries stay cleaned out. 

And how would that patient know he was making the wrong choice?  He probably wouldn’t.  And who benefited from those extra procedures?  Only the doctor who inserted the stents.  The patient’s better choice would be to ask for his cardiologist to review the recommendations.  After all, the cardiologist only makes money by counseling the patient, and not by performing treatments.

In my own situation, I was told I needed chemo immediately or I would be dead in six months.  How did I figure out that was the wrong choice?  By getting several other opinions and trusting my intuition.  Who would have benefited if I had undergone chemo?  Only the oncologist — it truthfully could have killed me!

How can sharp patients sort out these kinds of recommendations?  Here are a few thoughts for double checking objectivity:

1.  Assess whether the provider who is making the treatment recommendations can profit him/herself by performing the treatment.  That’s not to say that if they can profit, it is necessarily bad.  It’s only a way of determining objectivity.

2.  If that provider does benefit, then ask about any alternatives they know of to that treatment.  Is there a drug you can take instead?  Is there a therapy that can relieve your pain instead of surgery?  What about something like acupuncture?  Their response — including their demeanor in reply — will give you clues as to whether they are objectively making your treatment recommendation.

3.  Whether or not s/he tells you about alternatives — then ask if s/he is the BEST person to perform the therapy!  Now, yes, I realize that is a silly question.  No oncologist is going to tell you that you need chemo, then recommend that someone else actually provide the chemo!  BUT — the way s/he responds, whether it is through laughter, temper, ego, or a sales pitch, will tell you quite a bit about the objectivity of the answer.

3.  Trust your intuition.  You can tell whether a doctor is truly recommending something in your best interest.  You know whether s/he has listened to you to that point.  You know how often you’ve been interrupted — or not.  You know whether s/he is more interested in his/her ego or wallet than your well-being.

 4.  Research alternatives on your own before you decide whether to choose whatever recommendation was made.  If the surgeon tells you there is no alternative to surgery, and you find out that, in fact, there is a drug that can potentially heal you, then you know the surgeon wasn’t being truthful (or worse yet, isn’t up to par on all the options.)  If the orthopedist tells you physical therapy is the best alternative, and everything you read concurs, then you’ll have more confidence in the recommendation.

5. Finally — and if you can afford it, this is the very best way to do it…. Find someone who can make a truly objective recommendation to you.  This isn’t easy, but it may be the only way you can get the very best care for your situation.  You’ll need to find an advocate who understands the basics of healthcare (at the very least) and can guide you through the choices and decision-making.  Or you’ll need to hire a service that can make the assessment for you.  To date I have found only one such service — Lynxcare – and their objectivity and outcomes seem to be excellent.  They will use your history, your records, your test results, and every other piece of evidence to recommend not only the right care for you, but the right provider for you, too.  Their only stake is in YOUR well-being.  Check them out.

The bottom line is to make sure that any recommendations made to us will be to our benefit.  Good care, and the best treatment recommendations, will result in the most improvement that can be expected for the patient, at the least amount of pain and bother, at the least cost.

That’s not to say that others can’t benefit, too.  A win-win situation is always the best!  But treatment recommendations that result in benefits only to the providers, at the expense of the patient, are all too common.  Don’t let yourself be a victim.

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