Finally Gaining Access to My Doctor’s Report–And What the Heck Does It All Mean?

J

June 25, 2011

So I woke up feeling quite happy this morning.  After my “morning of fear” yesterday, with the help of prayers and love from Facebook friends (who didn’t yet know the reason I was asking for prayers), the relief of getting a few things done, and a sweet visit from my lover, I ended up having a lovely afternoon and evening.  The feeling stayed with me this morn as I went to join my older parents, their caregiver, and my brother for breakfast.

When it was time to leave, the caregiver took Mom to the restroom and Dad wandered to the lobby and I took a moment to tell my brother what was going on with me.  As I mentioned the word “biopsies,” I started to choke up.  He gave me an uncharacteristically heartfelt, enfolding hug.  (I’m not saying his normal hugs are insincere, but they are usually more a pat-on-the-back kind of thing.)

After breakfast I drove to the Radiology department to pick up copies of my mammograms and ultrasounds to bring to the appointment with my new doctor.  This was the first time I had seen the reports.  I didn’t realize I could have asked for them!

Here are some highlights:

  • scattered fibroglandular densities seen throughout both breasts”  (Don’t know what that means.  Suspect it’s a common, benign kind of thing.  Will have to research.)
  • a small grouping of minimally pleomorphic calcifications in the upper-outer quadrant of the right breast”  ( I have NO idea what “pleomorphic” is.  Will definitely look that up.)
  • “Ultrasound of the retroareolar region of the left breast demonstrates a 4.5mm nodule behind the left nipple.”
  • Right breast – “Biopsy suggested.”
  • Left breast – Nodule is “also concerning based on the patient’s history.  Biopsy suggested.”  (“Also concerning” concerns me.  Patient history?  What are they talking about?  No one has said anything about being concerned based on my history.  Are they talking about the discharge?  Are they talking about the fact I’ve never had children or breastfed?  (This is apparently a risk factor.  What is it about not giving birth that makes the risk more likely?  Does it have to do with the hormones produced?  Does it have to do with breast feeding specifically? )
  • “Assessment:  BIRADS 4.  Suspicious abnormality. The patient will be sent Letter B.”  (What the heck is BIRADS?  And which thing are they calling a “suspicious abnormality”?  And what the heck is “Letter B”?  How come no one talks to me about any of this stuff?  What the heck is wrong with them?  Shouldn’t I, AS THE FREAKIN’ PATIENT, be TOLD all this stuff?  Grrrrrr.)

Uh oh.   Not good news.   Already, with the first site, I have answers to two of the questions, and it is not good.  I totally guessed wrong about the “fibroglandular density.”

Breast tissue density has been found to be a strong indicator for breast cancer risk. Women with radiologically dense breasts, indicative of a large proportion of ductal and connective tissue, are at substantially higher risk of developing breast cancer than women whose breasts are radiologically lucent with a large proportion of replaced fatty tissue.

The most commonly used method for assessing and reporting breast density in mammography is the BIRADS (American College of Radiology Breast Imaging Reporting and Data System) describing four different categories: (1) entirely fat; (2) scattered fibroglandular densities; (3) heterogeneously dense; and (4) extremely dense.  http://www.u-sys.com/Patients_and_families/index.cfm/12

Well, actually, I’m confused.  “Scattered fibroglandular densities” is supposed to be a “2.”  Am I getting a “4” therefore because they’re more worried?  And if so, I kind of would like to have heard about their concerns.

Okay, this isn’t good either.  I hadn’t been that worried about my right breast because I was told 90% of the time, microcalcifications are not cancerous.  Here is what I just found:

  • Intraductal calcifications are suspicious of malignancy and are classified as BI-RADS 4 or 5.
  • Clustered calcifications are both seen in benign and malignant disease and are of intermediate concern. (sic)
    When clusters are scattered throughout the breast, this favors a benign entity.
    A single cluster of calcification favors a malignant entity.
  • The site showed two examples of clustered calcifications and two different resulting diagnoses.
    • There is a cluster of amorphous and fine pleomorphic calcifications.
      These calcifications were classified as BI-RADS 4.
      A biopsy was performed and only fibrocystic changes were found.
    • These are fine pleomorphic calcifications in a cluster.
      These calcifications were classified as Bi-RADS 4.
      This proved to be DCIS.  (ductal carcinoma in situ – early stage breast cancer)
      The message is that with these calcifications you cannot tell whether they are malignant or not and they have to be biopsied.http://www.radiologyassistant.nl/

Here is my reaction to the above:  I am SO PISSED at the doctors for not going into more detail.   Neither the radiologist nor the “breast specialist” suggested any of the above.  BOTH of them, in fact, underplayed the possibility of malignancy.  My best guess is that they are afraid to tell the patient because they are afraid the patient will get scared and emotional and either they don’t have the skills or inclination to deal with (gasp!) emotions, or they are unwilling to spend their oh-so-valuable time to offer any kind of comfort.  Therefore they evade the whole issue and give as little information as possible.

Up until reading these reports the ONLY information I’d been given was: a) a cluster of micro-calcifications in the right breast, and b) a 5mm nodule in the left breast.  Oh, and the discharge apparently did not contain blood.  I was told nothing about the density of my breast tissue and what that meant.  I was told nothing about BIRADS.  And I still have no clue what they mean by “patient’s history.”  I’ve always been blessed with good health.  What are they talking about?

If I had seen this report, I could have been doing more research!  I could have asked intelligent questions!  I probably would have been more open to the surgeon’s decision about the types of biopsies to be performed.  (The whole reason I was hesitating doing the biopsies he’d “suggested” is that I thought the chances of cancer were slim and I didn’t want to have deformed or scarred breasts and risk infection and high doses of radiation if there wasn’t a fairly decent possibility of cancer.  I didn’t want them performing these things just as a cover-your-ass kind of thing.)

I am so angry.

The weird thing is: both doctors were really nice.  If I had met either one at a cocktail party, I’d have liked them very much.

I am soooooo glad I’m changing doctors.

Also, FYI, the above was an excellent website (www.radiologyassistant.nl).  Very informative.  I wish I’d seen it earlier.  On the other hand, I had little freakin’ idea of all that was going on in these breasts of mine or I probably would have seen it earlier!

I’m still angry.

Okay, I just uncovered the mystery of “Letter B.”  I assumed all the mail I’d received from the hospital was bills.  I was wrong.  One of them was, apparently, “Letter B.”

It said:

“Your recent mammogram at ____ Hospital showed an abnormality which requires further evaluation by your physician….  The only way to be sure the abnormality is benign (not cancer) is to speak with your physician and see if any follow-up tests are recommended by them.”

By the way, the bold emphasis was theirs, not mine.

I guess this is what they consider good communication.  Wimps.

Moral of the story, ladies? ASK TO SEE YOUR REPORTS! ASK TO READ YOUR CHART! Apparently we can’t trust most clinicians to be upfront with us. And, IF you want to all the information so that you can make more informed decisions about your care, reading these charts seems essential.

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