Wednesday, January 23, 2013

DON'T BE DENSE: TALK TO YOUR DOCTOR

The new law went into effect on Saturday, January 19th.  Dense breasts.  Mine were.  Now they are in the a medical landfill somewhere.

This may prove to be an unpopular point of view but here goes.

My initial reaction when I saw the legislation and the push to have this enacted in other states?  Great Idea.  We need to know.  My feeling remains the same.  We DO need to know.  The question?  Should the information be dispensed because a law was enacted telling the medical profession how to do its job?  I think not.

I have no doubt there were medical advisors seated at the table as the words were carefully chosen, but the wording is mandated by legislation.  Our state representatives are dictating policy to our doctors regarding our medical care. Something isn't right about the whole process.

We had a conversation about this topic in a mentor session when I was in San Antonio.  I will always listen with an open mind.  My opinionated blogging which began as a source of humor and entertainment, primarily for myself, has now become a forum for real advocacy.  With advocacy comes a responsibility..... to understand things from many sides and then, to choose what I feel is best not only for me, but that which makes logical sense for the larger breast cancer community.

The law makes no sense.  I knew it as I was listening to the doctors on that mentor panel.  I wish my brain could recall what Karuna Jaggar, executive director of Breast Cancer Action stated so eloquently as she voiced her concerns on this very topic.  The LAW is the problem.  The information, on the other hand, makes PERFECT sense.  How should this information be dispensed and by whom...... THAT is what is at issue.  I am certain the answer is not in a form letter, written by politicos, and mailed by a radiologist.

Many of us get our mammographies in a large facility.  In most cases we never get to see or speak to the doctor who actually reviews the images.  A report is then prepared and sent to the doctor who requested the test.  It's been nearly 7 years since I had a routine mammography but as I recall, my gynecologist always wrote me a prescription.  My gynecologist got the report from the radiologist who read the mammography.  I got a letter.  The letter usually said everything was fine and it advised me a report was sent to my doctor.

Until that time it said something else.  Density and calcifications.  Not Dense Breasts but a Density.  I called the radiologist office.  I did not get to speak to him.  I did not get the chance to make a follow up appointment with him.  HE is not my doctor.  HE is the one who knows about this imaging stuff but HE is acting upon instruction from MY doctor.  And therein lies the problem.

Think of the radiologist in the same way you think of the pathologist who looks at biopsies.  You never speak to the pathologist.  You get your pathology information from your doctor (and for what it's worth, there is a blogpost in the making on the importance of great pathologists).  You get your radiology information from your doctor, too.

BUT, we are now getting a letter from the radiologist to notify us if we have "dense breasts"  .... and exactly what does that mean?  Well... you can't actually talk the to doctor who sent that letter.  It must be discussed with the doctor who ordered the test.  And some may not be fully prepared to explain all the nuances of what the imagining means and what further tests may be necessary.

Like everything in medicine, some of us will not need further testing and others might be screened with a code red vigilance.  ALL of us who receive those letters, however, will react and insist upon explanations.  Rightfully so.  What would YOU do if this fell out of an envelope addressed to you:

“Your mammogram shows that your breast tissue is dense. Dense breast tissue is very common and is not abnormal. However, dense breast tissue can make it harder to find cancer on a mammogram and may also be associated with an increased risk of breast cancer. This information about the result of your mammogram is given to you to raise your awareness. Use this information to talk to your doctor about your own risks of breast cancer. At that time, ask your doctor if more screening tests may be useful, based on your risk. A report of your results was sent to your physician.”


We are all pretty savvy in this land of social media, but let's presume for a second, this is what a neighbor sees.  Someone not quite so savvy.  It's more than a bit frightening.  Words jump.  "increased risk of breast cancer"  "raise your awareness"  "more screening tests may be useful"   and suddenly, off to the races......  And therein lies the problem. Should this notification be coming via a government form letter?  I still think not.

From where the doctors sit, this is how some have reacted:

According to a doctor who is the director of breast imaging at a hospital in upstate NY, the problem is many doctors don’t know what to tell their patients about the issue.  

"Most physicians ordering tests are not breast imaging specialists.  They don’t know what to recommend. They have given us a law and a mandate without any guidelines on what to do about the issue.”

And once again, we are faced with a dilemma.  Demands for tests that may or may not be necessary.  Fights with insurance companies who may or may not pay for the tests because there is no science based evidence to warrant those tests.  Sensitive tests throwing off images that may require MORE tests, invasive tests.  And what precipitated all of this? A form letter.  A FORM letter crafted in a government building in Albany.

Wouldn't it make much more sense for the AMA to establish guidelines so that when a mammography is ordered, the doctor provides information (literature or a conversation) about dense breasts.  The doctor, with the patient as a partner, might then mention what an appropriate course of action will be should her mammography find dense breasts.  Not everyone needs to be getting sonograms or MRI's at 30 years of age.  Some do.  Patient centered care.  Patients and doctors in collaboration about what is best for our own unique medical circumstances.  

I want proper care for all.  I expect proper care for all but above all, I expect that care be administered using evidence based science,  from a doctor.

I'm not really fond of receiving a frightful document from a politician who is laying the foundation for his next political campaign.  There are better ways to make this happen.  The government is not the answer for this one, folks.  We are barking up the wrong tree.  We all belong on the bandwagon, but we need to address the correct PATH for the bandwagon. This path?  Government overstepping to practice medicine.....  Hell... I think it's against the law to practice medicine without a license.

In twitter language... #FAIL.



7 comments:

  1. dear anne marie,

    i completely understand and concur with what's at issue - the LAW, not the information. i can imagine a radiologist having great difficultly swallowing this bitter pill - what if there is qualifying and/or quantifying information that gets lost in the shuffle of opening an envelope with a FORM LETTER with those alarming words/phrases you mentioned? and further, what if the radiologist decides the goverment FORM letter is enough information, and DOESN'T provide the more nuanced information to one's doctor? and even if that information is provided, what about people who are scared witless - how long a wait will they have for an opportunity to speak with their doctor?

    is there something i am not understanding here? really? seriously??? THE GOVERMENT? A FREAKIN' FORM LETTER???

    talk about slippery slopes, people falling through cracks, and just plain cruel and irresOpnsible alarmist crap - this really pisses me off. whose idea was this anyway???? BLECK.

    thank you, anne marie, for bring this to light. i cannot imagine how outraged and frustrated you must feel about this issue - gave me an instant headache!

    love you, love your persistence in advocating for us, XOXOXOXO,

    karen, TC

    love, XOXO


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    1. Karen,

      I so appreciate your support at my annoyance and getting WHY I'm annoyed... ok.... kinda a few notches above annoyed. The guidelines I talk about here are for NYS only. Apparently, there are bills pending in a number of other states but this one is the most restrictive. I came up with a plan. I want the ABIM Foundation to figure out how to include this in their "Choosing Wisely" campaign. Those are the right people for the job. Friday blogpost...

      Stay warm and stay WELL....

      Much love ALWAYS,

      AnneMarie
      xoxo

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  2. This, to me, is scary on a couple of levels. Many of us are not savvy enough to be as deep a self- advocate we should be. We RELY on MEDICALLY trained people to guide us. We are frightened waiting for results. And then to get a cold letter from the government? As far as I am concerned the government is way too far into our lives, leaving no room for human compassion. Let the experts in the field do what they as trained to do. On a personal note...when I found my breast lump (which wasn't' t hard to do cause it was huge) the radiologist I saw we t far above what was necessary for him to do. I am forever grateful to him for speeding the process along.

    Nataline

    p.s. and forever grateful that I happened on your blog, Anne Marie. You are a never ending wealth of information. Thank you. Grazie

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    1. Nataline,

      Thank you for that very touching P.S. .... I am grateful that we connected because of this blog. It's brought me such joy to have you in my life. I have to tell you that I had a similar experience with the radiologist who found the "density" that turned out to be lobular cancer. He was the one who held my hand and first uttered the word cancer to me. "I am sure a breast surgeon is going to want to remove those things to make sure it's not cancer." He was referring to another suspicious area which of course, was nothing... but that "density" would probably have been ignored if the docs weren't checking those calcifications. It would have been acceptable to watch the density and repeat scans in 3-6 months.

      I wrote him a letter to let him know I was so thankful for his astute eyes. It was many months before I realized how difficult it is to see lobular and pick it up at such an early stage. I was lucky for a doctor who was willing to do what was right for ME in that moment. He didn't have to say anything to me. He really shouldn't have said anything to me. I wasn't referred to him as a patient, I was referred for a test. That man holds a special place in my heart...

      xoxox

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  3. Oh my. This is some serious stuff in which you write. I have dense breasts. I have a genetic condition which puts me high-risk for breast cancer. I am getting MRI's at 40 years of age...I'm petrified with the way this country is going...which is why I am already debating - the prophylactic bilateral mastectomy now?

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    1. Oh Heather...

      Prophylactic mastectomy has taken quite a hit in the news because of the Miss America contestant..... Actually... I am planning my own little rant about THAT but.....

      The best advice I can give you is to read the note on Deanna Attai's Facebook page. There was an article in the NY Times about the overuse of prophylactic mastectomy. Dr. Attai is the voice of reason and here is the link to her Facebook page:

      http://www.facebook.com/DrDeannaAttai

      It's NOT an easy choice, it's highly personal and whatever choice you (or anyone else makes), as long as you've discussed it with your doctor and fully understand all sides, there is NO WRONG CHOICE and it pisses me off that plenty of people quite easily sit in judgement...

      Hugs..

      xoxox

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  4. Laws about informing patients would not need to exist if there were better standards in the medical field about this. Sorry, I'm a bit touchy on this issue, here's why: Sept 2010-first ever mammogram gets me an "all clear". ONE MONTH LATER; Oct 2010, Stage 3, HER2+ diagnoses. When I ask how this could possibly happen, I get an offhand "well, you just have dense breasts." Excuse me,"just"? Granted, that one month would not have changed my diagnoses if anyone had had the gumption to notice, "hey she has dense breasts, maybe we cannot rely on just a mammogram especially with her strong family history." I'm no fan of government intervention, but clearly these medical professionals needed some kind of kick in the butt in my case. And it was not there.

    As to the form letter issue, I disagree. This dense breast issue is not a law in my state, yet I got a form letter from the Interpreting Radiologist informing me of "an area" in my last mammogram, which is really just scar tissue from my surgery. The form letter suggested I follow up with another test in 6 months--not even bothering to acknowledge my status as a cancer patient who has to have a follow up test in 6 months anyway, regardless of findings of this most recent test. When I complained about this to my oncologist, he informed me all the radiologists (not sure if he meant in my state or what)send a form letter now to basically cover their butts (my words, but that is essentially his meaning), so they can prove that the patient was informed and the ball was in the patients' court, to prevent lawsuits later. So, while the government did not inspire that letter, some other non-medical power did (in this case the doctor's insurance against malpractice). What difference does it make if it is the government or insurance companies, I am starting to think the medical professionals are sort of untrustworthy, since outside forces have to motivate them to be upfront with me!
    Sorry for the long rant, these issues make me nuts, and I can't even really pick a side!

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