I have an idea.
I know EXACTLY who should be addressing the dense breast screening guidelines and I challenge them right here and right now to be the voice of reason. To take immediate action and come out with some sort of breaking news, in advance of publication initiative.
Remove the government from the equation and determine how to assure that every woman, every where has not only the information, but the specifics of how that information should be ACTED UPON by the medical professionals who understand the big picture. The whole picture.
I am dense, now what? Give us answers. Information without guidance specific to our individual circumstances is either useless information or dangerous information. Meaningful information so that we are empowered patients... that's what is needed. NOT a form letter. And this is the right organization for this job.
ABIM FOUNDATION : The American Board of Internal Medicine
Their website is jam packed with initiatives and collaboration. Things like Team-Based Care, Care Coordination, Patient-Centered Care .... and their newest initiative, Choosing Wisely.
From what I understand, some blog readers may tend to not want to click away. Read the post and then please DO click away. Start with the Choosing Wisely Link if only to read the intent of the campaign. Then, I would suggest Consumer Reports who is partnering on this to make sure the information is available to each of us, in understandable language, so that we can be empowered patients and ask good questions. And then, for the real science minded, take a look around the ABIM site.
Bottom line: Every recommendation in each specialty is made using evidence based science. Repeating for effect: Evidence Based Science.
So far, nine different specialty groups have identified their top five tests, the tests that doctors and patients should look at just a bit more closely before just jumping blindly. The science isn't there. For most people, the science isn't there. These lists are subjective, they are meant to open up conversations.
We must always be mindful that there is never a case where a recommendation will apply to every single person. Yes, we are all unique and no two circumstances are exactly the same. The best we can do is understand what is being recommended so we can have meaningful conversations with our clinicians to determine OUR best course of action. That's being empowered.
Next month, seventeen additional groups will be announcing their top five. It's like the Oscars. The groups have been identified. Their selections will be kept under wraps until the big day. I need Choosing Wisely with a twist for the Dense Breast Issue. ABIM.... this is important. What can you do to help radiologists, clinicians and 40% of the patients who will be told they have dense tissue? Can you develop a better guideline than what is being done in NYS? I think you can.
And, I owe you and those who selected the ASCO five a huge apology. Although I wasn't very public in my blogging, I was fully prepared to head into my oncology appointment in April demanding a tumor marker test. I was Pissed OFF when I saw that on your list. I have no other way of screening for breast cancer. Those markers were giving me a measure of comfort. And now? Not so much.
My mom's markers are consistent and have been for the past five years. They are more stable than mine. Her's bounce within three points. Mine can bounce as many as 7 or 8 points. Hers are also almost ten points LOWER than mine. My mom was diagnosed with a bone metastasis with extremely low tumor markers. I see both sides now. I see why they aren't as reliable as I had hoped. I see that one size most definitely does not fit all.
I'm sticking with evidence based science and I'm going to do my best to keep my emotions in check. Might you stem the hysteria that will soon be mounting as those canned letters have likely already hit several mailboxes this week alone. I sense this "solution" by instituting a law instead of a good medical practice is going to create a problem. Or many problems. Because, you see, sometimes, as I was once told by a very wise doctor:
Solutions Create Problems.
Before this solution creates a massive uproar, maybe you can re-solve the problem?
For Mom..... I'm home waiting for someone to come and thaw out the frozen pipe. I know you are getting your second shot today and I do not for one second like that I am not there. I love you.