For those of you following my Lump #2 journey, I've posted the next chapter called, Being Assertive Improves CT Scan Accuracy.

Yes - the CT scan provided more information and an encouraging report.  You can even see a photo (the scan image) of the lump itself!

But the real "empowerment" piece was how I handled the request for objectivity when it came time for the radiologist to read the scan....

Perhaps one of the most empowered steps I have ever taken - ever.

Take a read and let me know what you think.

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I would never have proclaimed myself a big fan of Angelina Jolie's - until today.

The announcement that she has undergone a double mastectomy in the face of evidence that she could prevent breast and ovarian cancer changes that. Her decision was well-researched, warranted, and she followed through. I'm impressed, in particular because she has gone public in hopes that other women will learn from her experience.  That makes me more than just a fan.

Jolie didn't / doesn't have cancer.  She had a high risk of it.  She didn't make the choice to have a mastectomy to treat an existing disease.  She had both breasts removed so she won't develop a cancer at a later date. She took drastic, preventive action. I give her big props - just as I give any woman who has or would make the same choice based on the "what if" scenario Jolie faced.  Not easy, but likely necessary and - very brave.

So what can the rest of us learn from her choice?

There are two keys here we can all learn from, no matter what disease we fear, whether we are male or female, young or old.

The first key is EVIDENCE.

Knowing her mother died at age 56 after a long battle with ovarian cancer, Jolie asked to be tested for the faulty gene called BRCA-1 that indicates a predisposition toward developing breast and ovarian cancers.  She discovered that indeed, she did have that gene, and therefore, she had an 87% risk of breast cancer and a 50% risk of ovarian cancer.

Fortunately for Angelina Jolie, such a test - a form of personalized medicine - was available for exactly what her potential problem might be - the genetic test for the BRCA gene. So she moved forward based on the evidence that a double mastectomy would reduce her chances of developing those cancers to only 5%.

In the face of clear evidence with those percentages, she could move forward.  To put it in your own perspective, if you could buy a lottery ticket knowing that you had an 87% change of winning - would you? Still in all, it could not have been an easy choice.

The second key is DECISION-MAKING about getting both or either TESTED or TREATED.

Fortunately for Jolie, every piece of the puzzle that might develop was available and affordable to her.

• The test for that genetic problem has existed for a number of years.
• She could afford the test (around $3000 but only sometimes covered by insurance).
• She knew ahead of time that if it was discovered that she had that gene, and therefore those high odds, that she could afford the cost of of treatment.
• She further knew that if she underwent the treatment, it would likely be highly successful (95% chance now that she won't develop breast or ovarian cancer.)

So the question for the rest of us is - what are WE afraid we might develop? Is there evidence to suggest we might be able to determine whether we are truly at risk?  And if we learn we ARE at risk, is there a way to be treated pre-emtively (also called "prophylactically") that is successful and affordable?

You'll have to answer those questions on your own because there are way too many scenarios to cover them all here. But I can show you how I've asked myself these same questions:

My mother, and her mother (my grandmother, of course) both developed and died from Alzheimers.  (In Gramma's case, it was called 'hardening of the arteries.")  So, of course, I have worried about the possibility I will develop it, too.

So the first question:  EVIDENCE -- there is definitely evidence that Alzheimer's has a genetic component. And there are genetic tests in the pipeline, but nothing widely available for someone like me to be tested.

But suppose there was a genetic test that could tell me with any certainty that I would develop Alzheimer's - would I?

DECISION-MAKING would lead me to the question:  is there a treatment available?

The answer is NO, so even if the genetic test was available, I would not get myself tested.  I have no interest in knowing I might develop something if there's nothing I can do about it anyway.  I can't imagine living with that knowledge without the ability to proactively prevent it.

As time goes on, researchers and manufacturers will develop more and more genetic tests and evidence, and more and more treatments for more and more conditions and diseases.  You can learn more about the state of personalized medicine here, and more about how to make a medical decision here.

Personalized medicine, while it sounds utopian, brings with it its own set of ethical, legal and moral questions, too. So you'll want to understand them before you make decisions how whether you want to move forward.

So until then, talk to your doctor, ask about the evidence, the tests, the possible treatments and affordability - then make your decisions from there.

Like Angelina Jolie, the life and family heartache you save, may be your own.

(You may also be interested in learning more about Angelina Jolie's "previvorship" from the About.com Guide to Breast Cancer and about the surgery itself from the About.com Guide to Surgery.)

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Photo © Getty Images

Last week I had a very informative, and overall delightful conversation with two gentlemen from Crouse Hospital in Syracuse, NY.  Our conversation focused on the experiences of patients who are treated at Crouse, some of the programs Crouse has put into place to help their providers communicate effectively, plus some of the ways Crouse includes patients in their decision-making about those programs and new initiatives.

Derrick Suehs, one of the gentlemen on the call, is Crouse's Chief Quality Officer. As his title would indicate, Derrick's job is to focus on the quality of the care patients receive while they are being treated at Crouse.

At one point, our conversation moved to those times when not everything goes the way it should in the hospital. As you well know, these are things that happen in every single hospital - every one - and hospitals need to develop ways to deal with them so they have as little negative impact as possible. Whether it's an argument between providers, or patients and providers, a medical error, or too much noise in a hallway, or the perceived rude treatment of a patient by someone on the staff - my question was, "What do you do to call attention or correct that kind of problem, or what do you do to try to prevent it the next time?"

Derrick - with his focus on quality of care -  had a simple reply.  "We ask them if their behavior passed the Momma Test."

"The Momma Test?" I asked.

"We ask them - Would it be OK if someone treated your Momma that way?"  was Derrick's reply.

OMG - to me, that is brilliant.  The Momma Test should be used by every hospital, every doctor / provider, every testing facility and every payer.  Because we all want to think our mothers would be treated with the utmost in dignity, respect, and patience.  We all get it.  It's simple in concept, and it's behavior we are taught as young children, so we all know how to procede.

We know it's the right way to treat someone - everyone - and not just our mommas.

Your doctor or other provider, or your insurer, or the hospital staff you have interfaced with -- do they pass The Momma Test?

If they do - tell them they do!  Thank them for their attention to those details that indicate respect, patience and attention to dignity.

And if they don't?  Tell them they don't!  Tell them about the Momma Test and that you hope they'll begin working on it...  They will understand immediately if you ask them, "Would you want your momma to be treated the way you are treating me?

Thanks to Derrick for sharing his Momma Test (and for implementing it at Crouse, of course.)

Do you know of other hospitals that subscribe to the Momma Test?

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Photo © Microsoft Image Gallery

Did you ever think you'd find a soap opera on the About.com Patient Empowerment site?

I realized that chronicling this journey requires more than just a few blog posts - and so I've begun what is, in effect, a grouping of episodes.  Last week I shared Episode #1 with you, describing Lump #2 and how I found it - plus some insight into my emotional make-up going into this need for a new diagnosis and yes, treatment at some point, too....

Now I've added Episode #2:  My First Doctor Appointment for Lump #2

I did meet with my primary care doctor last week - and as you can guess, she sent me for a CT scan.  She made a few suggestions (which I rejected!) and  wrote a prescription I hadn't anticipated, too. No diagnosis yet - but I have a follow up appointment with her in two more days.

Check out Episode #2 and see if you think I can improve upon my empowered approach.

All suggestions welcome!

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Photo © Fotolia.com