Dense: Very Stupid Breasts Outsmart Early Detection

Have you also noticed a sharp increase in the number of tweets and other social media posts regarding the importance of early detection in early stage cancers? I noticed a huge rise in mentions of mammography and self exam as tools in the messaging as well. Perhaps it’s my overactive brain looking for data points. Somewhat like playing “punch bug” as a kid: looking for different colors of VW Beetles in snail pace creeping traffic to satisfy my need to punch my little brother in the arm. In this matter, pretend I’m my brothers arm and the fist punching me is early detection. If it is the best prevention of breast cancer then I have a very bruised arm.
“Oh look! Punch bug pink!”
Slam! (out of nowhere a knuckle fisted puch lands sqarely on my brother’s shoulder.)
“Ouch! That hurt!” He starts crying alligator tears.
“Shut up! You’re so dense. We are playing punch bug!”
“Mom she’s hitting me again!”

Presenting De Novo
In cancer language de novo, roughly translated from Latin, ironically a dead language, means from the start. With dense breasts, cancer can go years undetected by standard (and very painful if you’ve got dense tissue) mammograms and the occasional ultrasound. And my stage four metastatic breast cancer wasn’t showing up for years on radiologists’ radars because of dense tissue. I always got an inconclusive decision with regards to the results. But the fact is, not one oncologist looked at the ultrasounds. Furthermore, the radiology teams always used the excuse that they’re dealing with an inexact science and the outdated technology with which their profession works. Amortization of medical equipment takes many hundreds if not thousands of tests and at least 10 years. Technological rates of change by Moore’s Law standards means we are at a minimum five years behind and this is a generous estimate.

So when I “presented” at the hospital in 2015, the diagnosis left me nonplussed. At 4:30 am a doomsday call went out from a nurse in the ER to my overtired, shower-deprived husband. He was asked to return to the hospital immediately and to come to the oncology floor. When he arrived we both sat wide eyed and exhausted from the day’s events waiting for the punch in the arm.

Slam! Ouch.

I received the tectonic plate shifting news with a prognosis of months to live based on that night’s CT scan. The results showed cancer cells taking up residence in each and every organ within my fluid-bloated belly. I reacted with the steadiness of a third grade teacher at 2:59 on the last day of the school year. My response: nope, not going to happen. I’d wait for further tests to come back as my intuition rang like the three o’clock school bell in that same classroom yet from a 10 year olds perspective, telling me I could run from the room and down the hallway to a reprieve from doom. From the hard punches that awaited me in a world of colorfully painted punch bugs.

Slam! Ouch! Stop it!

I hate the pink ones most of all.

I was partially correct, in that cancerous abdominal ascites fluid can appear to leave traces of the cancer cells like a swimmer floating around a pool on a sunny day. The cells cast cancer shadows everywhere and leaving radiologists not trained in oncology mystified I suppose. There goes the technology failing me again. The correct diagnosis, the wrong prognosis.

I’m now at the cusp of the end of my fourth year since the 25th day of March, 2015. So how did early detection help in my case? The technology failed me, my General Practionier failed me, and my killer boobs failed to warn me that I’d get punched over and over. They’re dense though. Exceedingly stupid. An IQ of two – one point each and a very generous point in my opinion.

So if you like me have stupid dense breast, and you cannot even feel a single lump because it’s all lumps, ask for a 3-D mammogram and if that’s not available yet for you, get an ultrasound. Have it read by someone qualified to read it. Please don’t wind up de novo if you can let early detection try to work for you.

Slam! No one told me.

Ironically, the color of the ribbon for metastatic disease is pink, green, blue and white – the same colors of my bruises as they just blossom before they heal. I’m weird, yes, but then perhaps my metaphor isn’t so silly at all.

“Mom! It’s hitting me again! Make it stop.”

Dense boobs, will they ever learn?

8 thoughts on “Dense: Very Stupid Breasts Outsmart Early Detection

  1. Hi Ilene

    I have just read your blog, it has made such a lasting impression on me.
    I blog about Dense Breasts on http://www.beingdense.com and I am active on Twitter.

    Not sure where you are based,
    I am in Ireland. The screening program system is dated, women with Dense Breasts are at risk because there are no inform protocols in place.

    The screening program screen women >50 and do not report on breast density.

    I would love to share your blog on Beingdense.com if you are ok with that.

    Thank you so much for writing this, I think you nailed it.

    1. Of course you may share anything on my blog any time. I’m based in California where the protocols are not so different than in Ireland, and dense breasts are not reported here either. I think there’s a stigma of presenting de novo even at 49 years old. I had mammograms and some ultrasounds but none were given a once over by an oncologist – my general Practionier hadn’t had anything more to say than it was nothing to worry about. And the hospital staff where I was diagnosed looked at me like I was irresponsible and wanted to know why I waited so long. It wasn’t kind, it wasn’t effective and to add insult to injury, there was a fight for my insurance money between the hospital I was in and the hospital that thought I was “theirs.” I spent an entire day in the hall on a gurney until my husband convinced the head of hospital administration to keep me put. My surgeon, who installed my port, gave me services for free saying he had everything he needed in life and his service to me was a gift since I had to deal with such a comedy of errors. One of the kindest gestures when juxtaposed against the oncology floor’s generally crappy demeanor.

      Four years later…I’m here. I’ve switched oncology teams and currently love my oncologist at Stanford. He’s a truly caring person who takes that extra time to communicate with me and even respects my input and intelligence to the point of giving me pre-publication white papers for my input. I’m blessed. Each day in the world is a gift, and I’m so glad to hear from you, and I love your blog.

      1. Ah Ilene you have really had to deal with so much. There are many similarities between yours and mine. I was diagnosed stage 3c though so I know I am l lucky to have found it before I hit stage 4. I have a long history of mammograms and a few ultrasounds. A mammogram 5 months before I was Dx was reported clear. Dec 15 I spotted a tiny nipple change and that was it – several biopsies revealed 7cm tumour. I started my blog in 2016 after I read Nancy Cappello’s Are you Dense blog. I miss Nancy’s presence on social media – she was an amazing advocate for Breastdensity. I believe the FDA will introduce guidelines now on Breastdensity reporting – too late for you and thousands of others but it’s a big step forward. Meanwhile Ireland ignores Breast Density and women remain in the dark about it. Even when I ask I cannot get my breast density report with my Mammogram report. I will keep up my blog and advocacy until we get change.
        So lovely to connect with you. Love your ability to say it for what it is and remain positive too.
        Thanks for sharing. Be good to yourself. Siobhán x

  2. If only the vocal ones, the ones with blogs and voices and podcasts and with fundraising nonprofits, and advocates, and I could go on, would all agree to a platform or a bill of rights or even a white paper on using the same names for the same thing, the same hashtags, the etc. we can have differing opinions, emotional responses, etc, but if we can all sing in harmony maybe our voices could be louder together – and in harmony. I couldn’t care less if someone wants to refer to a war or battle with their cancer if I don’t want to think about mine that way it’s okay. But what’s not okay to me, is that our community of brothers and sisters are dying because we aren’t being heard loud enough and with the same messages being screamed at to the right groups that control the funding, the studies, the medications, and so on… sometimes it takes a long time and a lot of searching to find out about things going on that could help me and people like yourself. It’s our community of women and men who I want to be in contact with – either as friends or just to know one another are out there, so I feel less isolated and more understood by those who get where I am coming from without having to explain myself to no avail.

    I’m sorry to get on my soapbox but I do feel so strongly about these issues and challenged but not one organization has picked up the baton to get us singing in harmony. What a ridiculous way to garner ego strokes – it doesn’t matter who starts the campaign but that it is started. We all can’t attend the conferences. We all can’t be the biggest fundraisers. All of us don’t have the energy it takes to start a foundation. But we all should have a voice and a better chance at surviving this ugly shitty disease that’s killing us off at a rapid clip.

    Did you know that if you’re diagnosed with secondary cancer you’re not counted in the metastatic group until you die? The numbers don’t even make sense to me and I’m pretty good with statistical data. I guess to some degree I get it. But honestly it’s all so fragmented and pink washed for a pretty presentation. Yet I’m dying because my body is out to kill me. And every time I turn around I am in pain, financially broke, absolutely exhausted, unable to sleep, forgetful, and losing my patience by being a patient in the most frustrating part of the universe where I can’t even get a group of people who have cancer to take a walk once a month together and I got tossed out of a breast cancer support group because metastatic is too depressing for the women in the breast group and I was downgraded to the “surviving with grace” group.

    My words fail to tell you that I thank you for letting me vent. Maybe I have a little anger issue? Ya think!?! 😜LOL

  3. Thank you for that post – my tumor did not show on the mammogram either and women under 50 do not even get mammograms and therefore it is vital to underline the importance of ultrasound! All the best to you <3

    1. You’re so welcome – it’s not enough to get a painful mammogram with dense tissue. Self exams are not useful when everything in the breast feels lumpy anyway. So how does early prevention work when we are many times likely to get breast cancer with dense tissue in the first place?

      You’d think that OBGYNs and GPs should know basic blocking and tackling, though mammography is not the best protocol for dense breasts. If ultrasounds were the first line of defense and testing at 40 not 50 was the age with yearly or every two year tests began for women with dense breasts perhaps we’d see more women with an early stage tumor detected before it went beyond the breast, as we say. Ultrasounds don’t use radiation either, so the argument that it’s bad for us is a moot argument.

      Thanks for reading and please pass this on to anyone who has dense breasts. We have to educate people to reduce the number of women, in this case, presenting with de novo stage four breast cancer. It could save a few lives and enough to warrant a better approach. Even if the testing policies don’t change, we have to fight to get ultrasounds done regardless.

      1. I couldn’t agree more and this is the message I am shouting out! It is not only the dense tissue, it is also young women in general, who are being sent away „being too young for breast cancer“ – there is an increasing amount of very young breast cancer patients and it is time that doctors wake up and examine them properly, even if they are under 50 ❤️

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