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.