Metastatic Cancer Awareness Day: 114 more will die

In the United States, 40,000 adults died last year from a particularly horrible terminal illness. The same critical disease queues up approximately 155,000 into a lemming line and eventually fall inside our graves. Remarkably, exact statistics aren’t available to understand how many people died as a result of metastatic breast cancer (MBC). Many of us lemmings in line, we’re not counted in the statistical data. For instance if you’re diagnosed this year with any stage of primary breast cancer for illustration purposes say 15 years later you’re one of the 30-40% who will eventually be diagnosed with MBC, you’re not counted in that number because you’ve already been put into the pool when first diagnosed with stage 0 and I-III.

Furthermore, if you’re “lucky” and you survive MBC more than five years and we’re diagnosed de novo (from the start) then there’s no formal tracking at least not in the United States. I suppose it’s not as interesting since it would sound less sensational to the pharmaceutical companies to track 15% give or take. Not many of us live five years beyond diagnosis – the majority die in an average two and a half years.

You bet I’m glad that we had one day. Wow! For those 30% who will find themselves diagnosed with MBC – the vocal metsers or metavivors have an entire day to explain what stage four metastatic breast cancer really means. To try to define the extent of collateral damage to our lives. To leave women (and men) with a better understanding of just what it means to live with an incurable disease. To hear these phrases over and over, “but you look great!” or the ever popular “you don’t look like your have cancer.” To have people who were once close you actually not believe your diagnosis. For family believe you’re actually lying about having MBC since you simply look too good to have any disease at all.

Just a lazy, early retried, government money sucker. I wish. No, I don’t wish. I do wish I were not laden with dense breast. The tissue in my fun bags is indistinguishable from the blood sucking cancerous tumors that started whittling down my life to a stump nearly five years ago. The years when the discussion was about indeterminate mammogram and ultrasound results. The years just before 3-D mammography might have saved my life. If you so happen to have dense breasts like I do, insist on more diagnostics and a physician who’s better at reading radiological results than the abilities of an average technician or your general practitioner. I wish I’d known more then. But wishes don’t often translate to reality once the blade has come down in the guillotine. My tumors weren’t large and still have no lymph node inclusion. It wasn’t law yet to notify women of their breast density. According to

Adding more sensitive tests to mammography significantly increases detection of invasive cancers that are small and node negative.

I wish either sociopathy or borderline personality disorder were my diagnosis instead of invasive ductile carcinoma with osseous metastasis to the bones, liver metastasis, multiple periocentesis to drain asceites fluid buildup from my abdomen, and a nice size tumor that pressed on my duodenum and would not allow any food to pass from my stomach to my small intestines. My body is an amusement park for cancer, an e -ticket ride at one of the many Disney theme parks. This one is Cancer Land where the characters aren’t cute and they come home with you for the rest of your life.

I’m on my third line of therapy. Xeloda in 2015, Ibrance and Fulvestrant in 2018 and currently, and Taxol in late 2018 and the first six months of 2019. There’s still lots that I can do. I also take charge of my own health and my oncology teams. I’ve moved to a less stressful more peaceful place. But I’m lucky as I know many women do not have some of the resources of a partner as I do. But if you take one message from my day late post, insist on the right level of detection for you even if you are unlucky enough to wind up with a cancer diagnosis. It may save your life.

No poem this week. I’m a little down and I’m going to pick myself up as I have done every day by drawing. I’ve been Zentangling on every piece of paper I can find. It calms me and I keep my mind really busy when I need to – I highly recommended it. I couldn’t draw, either. But I can now. It’s amazing what we can do if we put our minds to it.

A must listen: Breast density and patient advocacy – in conversation with Siobhán Freeney 🎧 – Karin Sieger

In this episode of her podcast ‘Cancer and You’ Karin Sieger speaks with breast density advocate Siobhán Freeney about breast density and patient advocacy.
— Read on

Breast Cancer Action Think Before You Pink Toolkit

As I look at the many messages portrayed about breast cancer, one might get the wrong impression. The impression that early detection prevents secondary breast cancer. The impression that if one dies from breast cancer they must have done something wrong or or have not done something right. It’s a message that pink is the color of health – the color of support, the color of good women who survived doing all the best treatments. The color of white women. The color of disease free women. The color of great corporate citizenship. I’m certain that there’s individuals whose hearts in the right place, but the companies for which they work interests lie in only one thing: shareholder value, read profits.

Profiteering on the backs of the suffering makes me wince. I’ve been a CEO. I know the impact of impressions in the public eye and their bearing on profits. This primer provides you with the necessary information to help educate and actionable things you can do to help uncover the myths surrounding metastatic breast cancer. We don’t ever stop treatments, the treatments fail us and we don’t survive, we die. We are not counted until then, and the number of us is a mere estimate that hovered around 160-170,000 every year with 40,000 new cases and we die every day.

The disbelief in our illness because we look too good to be so sick creates another paradox. I was told this evening I could work and plenty of people with cancer work. Yet if a job were available in Silicon Valley for a woman over 50 with metastatic cancer that would make her an employee who needs more than 50 sick days a year and late arrivals and early departures in a cut throat traffic heavy ugly, stress inducing environment I’d like to imagine that it would be easy and if it were I’d be able to make enough money to both survive and to pay the massive health bills and massive loss of wages for going to an office with flickering lights, noise, electromagnetism, and so on? You might think it was this very environment that accelerated my disease in the first place.

Call me a pessimist or a cynic, but 28 years of professional experience got me nowhere once I reached 47. Many women struggle with finding work that pays what they’re worth. I feel like pink washing is sort of like that. The token woman here or there who is able to hang on that long and then a company can take its due credit from her actively working for them for less than she’s worth. In this case, it’s her life. My life.

So click the link and download the documents available to you. They’re worth reading and may just move you to act on your indignation.

And, cancer really, really sucks. I’m clearly not feeling hopeful today. But there’s always tomorrow…or not.

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?