Breast Density - Why It Matters, and Why the FDA's Ruling Comes Up Short

Last week, the FDA updated its rules about mammography and breast density. It is now required that women be notified of their dense breasts, and suggests "additional screening" if indicated. 

OK, well, it's a step in the right direction. I had dense breasts. So dense, in fact, that the 3.6 cm tumor growing there was missed year after year on mammogram. Unfortunately, those mammograms were dictated as Birads-2: "benign". They commented on density, yes - but the leap from 'you have dense breasts' to 'density hides cancer on mammogram' never happened in my mind. (Pictured above: my very dense left breast, with no evidence of cancer in 2020, that in fact, had a big lobular cancer.) 

So in 2020, when I felt a lump in my left breast, even though it felt weird and wrong, I LET IT GO. I did NOT SEEK CARE FOR A BREAST LUMP - please re-read that several times. I'm a physician. I knew it didn't feel right. But - "I had a normal mammogram 5 months ago, so this CAN'T be cancer" was my thought. 

How stupid I feel in retrospect. How angry I am that I waited another six f*ing months before getting that thing checked out. That thing that was very much a cancer, a big one, sitting there invisibly on my mammogram. I let the false reassurance of that mammogram delay my diagnosis. I knew my breasts were dense. I know now that that having dense breasts

a) increases the risk of developing breast cancer (independent of family history, lifestyle, BMI, genetics)

b) decreases the sensitivity of mammogram 

So the new FDA rules requiring notification of density and suggesting additional imaging for women with dense breasts are great. But there is zero mandate that anyone actually pay for that additional screening - so it's all fine and good to suggest maybe you need an ultrasound or an MRI, but those are expensive and require either good insurance, or mandates for coverage. Most women in the US have neither. You will need to advocate for yourself, especially if you are young and "without risk factors", to get additional screening. But please do it if you have any concerns, and dense breasts. Do not be falsely reassured as I was by "normal" mammograms. They weren't normal, they were hard to interpret due to the density. Density plus the sinister pattern of lobular carcinoma were a deadly combo that fell through every possible hole in the Swiss cheese of cancer screening. I did everything I was supposed to do, and my tumor was already stage 2 by the time it was diagnosed. 

Re-read your last mammogram report, and find out if you have dense breasts. If you do, get additional testing for absolutely any concerns or changes.
It might save your life. 

Scanxiety Day

 

Another scanxiety day for me - first MRI since double mastectomy, looking for local recurrence in chest wall and internal mammary lymph nodes. 

I hate cancer. Two years in, there’s no less anxiety, or fear, or anger. It’s not always front and center, but it’s always waiting in the wings. 

Every scan raises the executioner’s sword over my head - will today be the beginning of the end? How quickly will the sword fall? 

Hoping the radiologist takes a long lunch and doesn’t get around to this one today. I don’t want to know. I want to say “Not today, cancer” for just one more day. 

#lobularbreastcancer#doublemastectomywithoutreconstruction #breastmri#scanxiety #nottodaycancer #cancerlife#spotthecancerpatient

2 Years N.E.D.

We happened to be in Grand Teton National park on March 1, 2022 - my one year NED anniversary (no evidence of disease). We decided to make a tradition out of it, and spend every March 1 in a different national park.

This year‘s NED anniversary brought to you by Zion national Park in Utah. No evidence of disease x 2 years. Take that, breast cancer. 

2 long, fear-filled, anxiety ridden years. But as far as I know, the cancer left with my breasts two years ago, and has been gone since. As far as I know, and that’s as far as I can go. So onward to adventures celebrating life in beautiful places, one year and one national park at a time. 

Grateful to be here today, with @beewood17 by my side, ready to stave off breast cancer for another year. 

#twoyearsned #fuckbreastcancer #ihavelobularbreastcancer#youngwithcancer #doublemastectomywithoutreconstruction#noboobsnoproblem #notputtingonashirt #gratitude#keeplivinglife #zionnationalpark #angelslanding #doepicshit#optoutside #nottodaycancer #fuckcancer #fuckmenopause#stillaliveandkicking #takethatcancer #cancercansuckit