Friday, January 25, 2013

DON'T BE DENSE, BE #CHOOSINGWISELY

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.

8 comments:

  1. Anne,
    Very informative blog today. Not to worry about my appt. today. To let your wonderful group know, if this is a successful treatment, it is a walk in the park. I feel healthy and so far, no side effects. (except a sore butt for a day) Love you too. Mom xoxo

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  2. You raise a lot of questions with the dense breasts. Honestly I am confused about all of it. I see some states enacting laws when the issue for me was that I had dense breasts and should have been doing ultrasounds with my mammograms as nothing showed up on a mammogram. I think we all tend to look at the cases around us and it frames our thoughts of what should be done. Tumor markers are a minefield. Mine go up when things are fine and go down when they are not. I don't think I know what should be done because it's such a grey area. I have been told by my Doctor that I should have been getting ultrasounds with mammograms because I had very lumpy breasts. For me I would have felt better if I had the ultrasound the year before my diagnosis as the lump came and went. I think this thing is best discussed on an individual basis with one's Doctor and people should make sure they have the right one. That's my two cents. Mostly I am thrilled that your mom is doing well and she wrote to us. Both of you are on my mind a lot. Hugs and prayers plus XoXo- - Susan

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    1. You bet, Susan...
      Discuss with out doctors... Always... and that's why I would love to see a medical group set out some guideline for discussion and some accessible information from responsible science reporting available for patients so they may frame their conversations with their doctors.

      The stupid NYS law addresses NONE of this.... It's the equivalent of lighting the fire and running away. The woman CAN'T talk to the radiologist who understands the nuances of the images, some of the doctors ordering the mammos may not properly understand thus leaving us to Dr. Google ....

      We need to know... It's not only about having the information, it's about knowing what to DO with it that's the more important issue.... You point that out PERFECTLY in your own situation.

      And thank you for keeping my mom in your thoughts.. It means lots!!

      xoxox

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  3. AM: My Onco is NOT a believer in BC tumor marker tests. We discuss this every time I see him. He says they are not reliable. Of course I wish it were so simple, that a simple test could portend what's really going on invisibly in my body.

    It's been an ongoing battle to trust my doctors (while continuing to question their decisions). Trust has been a real challenge in my dance with cancer. It's also one of my biggest challenges in life in general. (Funny how cancer's prism can reflect that back to me.)

    Sending your Mom lots of {{{hugs}}}!!!

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  4. AM, if you wait for any govt institution (National somethin-somethin... American Board of somethin-somethin) to publically put out truth on anything medical-related that is also associated with big Washington lobbies... well... you're wasting your time. Women *must* take charge of their own health, research for themselves, seek their own answers to questions they have. The internet is vast & so is the knowledge available. Don't depend on anyone else. We women can only depend on ourselves.

    No, I've never had cancer but I can tell you there was a time when "the doctors" thought I did. I had a cyst on one ovary & a mass on the other. I had to have both removed, a dozen years post a partial hysterectomy. The "gyn cancer specialist" I went to, for my pre-surgical appointment, and I had a real good "come to Jesus" conversation. I informed him that if he saw cancer during the surgery, he'd better get it all out cos there would NO chemo & NO radiation & no nuthin' for this babe. I don't do poisons & I'm nobody's guinea pig. My "specialist" was pissed but I didn't care. I'm a registered nurse & know all about his kind... and the AMA 'n other "healing institutions" like them! *sigh* No dice! If I had ovarian cancer, then my time was going to be up but I wasn't about to spend what I had left of life without hair, puking my guts out, barely able to walk.... all due to chemo & radiation trying to "help" me. Nuh-uh! Nope!

    I feel your pain (both my parents are gone... one to cancer & one to who-knows-what... she's like me & didn't want to know... a real badass woman, my mom!!) but if you are concentrating all your earthly efforts on working with big, resource-wasting, govt-subsidized, govt-controlled, in-bed-with-drug-companies, organizations... well... I personally think you're wasting your time & energy. There a LOT more your doctors & the American Board of Somethin & the National Somethin aren't telling you... and it's not only about dense breast tissue & how it relates to breast cancer.

    Put your energies into finding out what they're not telling you, about how people get cancer. Look to the money stashes... in the big vats of poisons poured on all our fruits & vegetables... in the huge syringes of hormones & stimulants & lord knows what else that's injected into the animals whose meat Americans are eating... in the fast food industry.. in the FDA that approves all this crap, with warning labels on the side, to be produced & distributed to humans for consumption. Research that!! Then get really REALLY angry... and steer the energy from that anger into stopping cancer in future generations. Cos I think stopping cancer in ours is pretty much a mute point anymore. Unfortunately.

    Start here in your research, if you wish, & then write the FDA a sweet letter, thanking them for you & your mom's cancer... and the hell you've been going through because of it.

    http://www.naturalnews.com/032659_arsenic_chicken.html

    --Andrea


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  5. dear anne marie,

    well, i clicked away! i am so glad you have presented your case about the NY law/letter re: DENSE to ABIM. it will be very interesting to find out what their response is. i was impressed by their site - especially at the end of the lists of tests, under the heading of when you need them, when you don't - it advises when to say "WHOA!" to your doctor. i worry about unempowered patients who get shuffled into tests and procedures they would be better off avoiding or simply do not need, as well as those who demand them from a doctor who isn't patnered up with his patients, and instead of having a conversation to help explore concerns, fears, et. al. gives in and write the script or the order. i hope the ABIM and it's paticipating specialties truly is a fair and balanced orginization, looking at both sides of the coin (pun intended)in health care. thanks anne marie for sharing this site.i have several friends and relatives who i think would benefir from having a look/see.

    and to your mom - how sweet is SHE?! give her a big (gentle) hug from me and tell her i am thinking of her every day, sending waves and waves of healing and comfort, so glad she's feeling so well.

    much love, dear friend, XOXOXOXO,

    karen, TC

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  6. asking, what may be a totally ridiculous question. can Timor marker be explained please? I feel out of the loop on this one. Thanks for the info.
    Nataline

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    1. Nataline,

      Tumor markers are determined using blood tests. They are very reliable in some and not reliable in others. They are not used routinely in the course of a "well check up" and I don't want to speak for others. In my case, they were checked from the first time I had blood work done after being diagnosed. They have been doing them up to and including my most recent oncology check up. They use a number range (much like a red blood count).

      There are two sides to this coin. In my mom's case, her numbers did NOT change at all. So, we were both lulled into a false sense of security when this bone thing started. No change in tumor markers so it's probably nothing. There are other people whose markers are reflective of an issue but I know of one very dear friend who watched those markers rise for almost two years before something finally appeared on a scan. THEN, there are others whose numbers rise and they just live with this, not knowing what is happening or IF something is happening and that can go on forever.

      Worthy of a longer conversation. The point? As always, not everything is for everyone. Clearly, for my mom, it wasn't for her. My friend? Definitely. Me? I have no idea and I know that the test is likely no longer being used. You can email me and I'll be happy to share what I know.

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