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Archive for the 'Cancer' Category

O! Fun to be Found in O Magazine

In the five years I’ve been working on patient empowerment and patient advocacy, I’ve been thrilled to have been quoted in the likes of the Wall Street Journal, US News & World Report, Forbes, Fox, NPR, PBS and others…

But now I know I have arrived — because O Magazine came calling!  Sure enough — an article called Someone on Your Side – it’s about hiring a patient advocate to help you through a medical problem. Because I am the founder of AdvoConnection and work extensively with private patient advocates, I am one of the people quoted in the article.

I join three of my distinguished (and very talented!) colleagues.  Hari Khalsa is the Health Whisperer.  One of her patient-clients who was being treated for thyroid cancer just could not get her doctors to coordinate her care.  Hari stepped in to make sure the care was coordinated and Tracy, the patient, got what she needed.

Gail Gazelle is cited in the article, too.  Gail owns a private advocacy business called MDCanHelp.  Gail points out that too often doctors just don’t have the time to devote to care coordination as they should.  Private patient advocates step in to fill the gap.

And Ken Schueler, who has been coordinating care for cancer patients for many years, is quoted, too.  Ken provides some advice for finding good health information online about diseases, clinical trials and more.

The most important information for you?  When you read the article, you’ll realize how important it is you find an advocate to help you.  Although the Patient Advocate Foundation might work for you if you can’t afford an advocate (they handle insurance and  claims issues) — if you need care coordination and help with your medical decisions, then you must give serious consideration to hiring a private patient advocate.

So how do you find these people?  Simple:  a directory of advocates who have been reviewed for their expertise, and work closely with patients like you everyday:  www.AdvoConnection.com.

Private patient advocates provide you with improved health outcomes AND peace of mind.

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A Doctor’s God Complex, a Life Nearly Lost

A friend and colleague, Franny, shared her story with me and caused my jaw to drop. Then, I realized it didn’t really surprise me at all.

Having suffered months and months of treatment for his brain cancer, Asa’s life was almost lost due to the arrogance of the resident who was in charge of his care.

Read Franny’s story and see what you think. Then see if you agree with the steps she took afterward or whether you might have done something else instead.

A Doctor’s God Complex, a Life Nearly Lost

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An End Of the Year Revisit — SPTCL and Misdiagnosis

If you’ve read this blog for awhile, then you know 2008 was the year of SPTCL misdiagnoses.

SPTCL, subcutaneous panniculitis-like T-cell lymphoma, was the rare and deadly lymphoma that kick-started my work as Every Patient’s Advocate.  I was told I had it.  In fact, I was told by two labs and an oncologist that I had it, and had only a few months to live.

But I didn’t.  And I’ve written extensively about the fact that I didn’t have SPTCL and what I did to figure that out.

Earlier this year, in May and then July, I was contacted by two others who were dealing with the same diagnosis of SPTCL.  Heather contacted me, then Daniel’s mother contacted me (Daniel is a teenager).  They had found my work on the web and asked if I could help them get the information they needed.

So I did.  And we learned that both Heather and Daniel had been misdiagnosed, just like I had.

Fast forward to today — the end of the year, and holiday time. I checked in with both Heather and Daniel to make sure they are still doing well.  And yes, they most certainly are!!

I still choke up.  It’s still a bit overwhelming.  That’s three human beings, all of whom shared a misdiagnosis, none of whom underwent chemo, all of whom are healthy today.

Which is precisely why I do this work.

Here’s to even more great discoveries and saved lives in 2009.

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Two Healthy De-Cancered Patients

De-cancered — a good word, isn’t it?  Look at these two faces — they look quite healthy, don’t you think?

Well — they most certainly are — quite healthy, despite the chemo both faced prior to proving neither one had the cancer she was diagnosed with.

What this photo doesn’t show, is the emotion behind it.  In fact, I have trouble looking at our smiling faces without choking up. That’s Heather on the right — the young woman who contacted me last June to tell me she had been diagnosed with the same rare lymphoma I had been misdiagnosed with.  We proved the professionals were wrong — Heather had no cancer at all.

And that’s me on the left — I was just so happy to meet my very healthy friend Heather and see for myself, in person, that she’s doing so well!

We met for the first time last week in Las Vegas, not far from where Heather lives, and actually quite far from my home in NY.  I was there to attend an About.com conference – but we made time to see each other.  And it was the very best “event” that took place during the entire visit to Nevada.

My hope for you is that you, too, will take the time to learn everything you can about a diagnosis you’ve been handed — it may be correct, or it may not.  I promise you that if either Heather OR I (or Daniel, who was also misdiagnosed this summer) had believed the professionals, despite our intuition and proof to the contrary, we would not have been able to meet each other, we would not be healthy today — and we would not be here trying to inspire you to better and more successful medical outcomes.

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Doctors as Patients – Maybe This Should be Part of Med School?

From time to time I’ll read an article written by a doctor about his or her experience as a patient.  Several have written books about their experiences, and what they learned from them.

Often their own patient-hood causes some sort of epiphany.  That “aha!” moment that helps them GET IT.  Their work is no longer their job, or their career.  It becomes a total understanding of how their patients feel, how they are fearful, confused, frustrated and anxious. It creates empathy.

This came to mind today because I found two articles that address the subject.  The first was published in Healthy, edited by Amber Smith of the Syracuse Post Standard (the newspaper that carries my biweekly column) — called Doctors As Patients, it tells the stories of five doctors who had their own experiences as patients and all of whom feel much better prepared to do their work now.

The second was an article about Dr. Ron Davis, president of the AMA (American Medical Association) and his diagnosis of pancreatic cancer.  I’ve blogged about his article on my About.com site.

Regardless of their experiences, most doctors will still never “purely” understand the feelings of inadequacy each patient feels when it comes to understanding his or her medical problem.  No doctor can ever subtract his or her knowledge.  Further, when a doctor goes into treatment, there is still a professional courtesy that goes along with it.  Regardless of what form all that takes, the experience is still different.

But if I had my choice?  I’d most certainly choose a doctor who’s been in that very vulnerable position of having been a patient himself or herself.  That doctor will most definitely be more empathetic. It’s a perspective that will serve him or her well in practice, for sure.

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