Thursday, October 15, 2015


ASK QUESTIONS. Ask lots and lots of questions.

Gather your information and then, make your very best attempt to remove some of the emotions associated with personal medical issues (or those of loved ones upon whose behalf you may be acting).

Try your hardest to incorporate logic and interject some critical thinking into the process. Ponder.

And then, make your decision.

Choosing Wisely is a campaign I was about which I was somewhat skeptical when it was first announced. It was less than a year after I began writing, I was primarily interested in chemobrain research, knew little, or quite possibly nothing, about evidence based practices and my emotions where pretty much out of control in CancerLand, Homeland (great show, by the way) and if I recall, pretty much any other land where I found myself.

Today, I'm interested in all research. Primarily, my focus has shifted to research which may hold the promise to stop the breast cancer deaths which are at the same rate for 40 years (cite my source? Clifton Leaf, Truth In Small Doses -shameless plug: do scroll down to the 8th-ish comment - wherein every single statement in the book is cited from its source). Today, I understand how to decipher evidence based from anecdotal or observational findings despite what may appear to be overwhelmingly compelling "proof." There's no proof until it's been properly studied.

Science. We hypothesize and then we develop the proper questions to attempt to prove the hypothesis. After that, we design research to help answer the questions so we can determine if we are on the right track. Sometimes we are on the train. Others we aren't even near the station. And yet, when the thought popped into someone's head, something was compelling enough to determine, "Hey, this is definitely worth a closer look."

There are plenty of failures. There are plenty of things that fail to meet so called end-points. Statistical significance, which is an accepted standard to advance the hypothesis to the next level of research, is quite a different animal than real significance. OK, so what in the hell did that just mean? A drug may be deemed to be statistically significant because it extended survival by weeks over the existing treatment. There's a foundation for an evidence based finding.

Yes, this is important to the science community but does weeks, very few weeks in some cases and at what cost to quality of life, hold significance for the rest of us. That's a rhetorical question and is on a path where I will not take this conversation. Too many gray areas and today, I'm choosing to be black and white.

One of the tests that is discussed over and over again? Serum tumor markers. This was going to be the sole way of putting my mind at ease during my annual oncology appointments. It was one of the first tests Choosing Wisely targeted as a potentially unnecessary test. I recall the announcement was made just before my annual appointment. I recall there was very little discussion between the oncologist and me. The hospital would be examining the reasoning behind the findings and would make a recommendation. Since that had not yet been done, there was no reason for debate or discussion. He hadn't had the chance to read everything that was published and one thing I will say about my oncologist. He's an outside the box thinker. He will make up his own mind after a careful and thorough review of the findings.

On that day, the blood was drawn. Tumor markers normal. Angst over. And the parting statement, "It's likely these tests won't be done next year." I recall walking out thinking, "Yeah, we'll just SEE about that."

In the year between April of 2012 and April of 2013, I participated on my first CDMRP panel as a consumer reviewer, I was invited to the annual San Antonio Breast Cancer symposium by Alamo Breast Cancer Foundation where I had lots of work to do. I wrote a lay abstract for a grant which was funded (Let's not go THERE for now). My mom was diagnosed with metastatic disease, right up there in the top five worst days ever. I participated in the AACR Scientist Survivor program.

I was beginning to understand evidence based practices, intellectually. Despite this chemobrain thing.

My "We'll just see about that," during my annual appointment turned into, "No thanks," when I was told the hospital's position on tumor marker testing. "We're advising against it but if you want us to do the test, we will." Score one for shared decision making.

I have come to realize that my issue was this whole early diagnosis narrative that permeates everything that has anything to do with breast cancer (indeed, most cancers) but in October, early detection is the message every single place I turn. And every single time, it elicits the same response. I think I've said "Bullshit" to my television so many times these past 15 days, anyone who happens to be in the room looks at me as if I've truly lost it.

Here's the thing. Early diagnosis of PRIMARY disease may help (some, most, many). Again, I'm not going down that path at this time. The issue at hand for me was the realization that, at this point in time, early diagnosis of a distant recurrence does NOT appear to improve overall survival statistics. Once metastasized, there are so many other things that come into play.

Based upon a robust body of evidence (cite my source? Not here.... just look at the mets statistics) being symptomatic and going to the doctor to have that headache checked, or the bone pain in your back looked at, or dealing with that cough because every respiratory infection we will ever have, pretty much for the rest of our lives, WILL BE indicative of lung mets when compared against elevated tumor markers, ongoing scans and finding the metastasis early does not seem to change outcome.

What is the sense in watching tumor markers rise and continuing to subject one's body to scans until something may (or may never) become large enough to show up on an imaging test. I'm working on this mindfulness thing so I began to examine this whole thing in a zen-like mindful place and I've determined the following.

I see where this became a problem for ME.

The early detection message that has been pounded into my head for decades.

Early detection of PRIMARY disease is not the same as early detection of a distant recurrence.

Early detection of a distant recurrence is a different animal and doesn't appear, with the current research findings, to make a difference. Mets discovered by tumor markers and scans vs. mets discovered because a symptom brought you to the doctor are, for the most part, created equally in terms of overall survival.

Again, I'll use my mom as an example. When she was scheduled for the biopsy on her bone, an accidental finding as they were watching a nodule on her lung, SHE comforted me. "Hey, what about those tumor marker tests. If they are normal, this bone thing must be nothing. Right?" And yes, in my mind, I remember this. "GREAT point, mom."

And during the course of that time, she mentioned several times, "Every so often, I get a pain right here." The words were emphasized as she pushed into the center of her rib cage favoring the push in one direction.

That is where the bone metastasis was found and her tumor markers, still today, are unreliable. Any time that test is performed, they are lower than mine ever were.

It was my personal experience that finally allowed me to remove my emotions from the decision making equation. Note: My emotions may still be all over the place. Check. They ARE still all over the place but not with regard to unnecessary testing.

I wonder if I didn't have such first hand proof if I would feel the same or would have been able to grasp the whole concept.

This was a very long way of saying, no matter what your choice, I get it. I really do. The intangibles matter. Anxiety matters and if testing is something that is going to help with anxiety, it's likely less expensive than weekly therapy and a lifetime of anti-anxiety medications. Unless, of course, there is an elevation in those markers. Then, let the testing begin, along with the anxiety and the best person I know to discuss this is Lori Marx-Rubiner whose metastatic diagnosis was a relief (her words, not mine). Rising tumor markers for a year..... and then, the scan finally showed something.

All I'm saying is what I always say: Empower yourself.

Ask the questions. Synthesize the answers. Sprinkle in the intangibles and then make your decision. What works for one doesn't necessarily work for another nor does it make one choice right and by default, the other, wrong.

An informed decision, regardless of how you got there, beats the knee jerk reaction every single time. A sheep just follows without thought, a shepherd, even if their belief doesn't align with main stream thinking, is leading their own path.

As for those personal aforementioned out of control emotions, not too much has changed... Circumstances, yes but one resolved issue and ten more seem to pile on. So, on all of those fronts, I'm still working out the kinks in my practice of mindfulness.

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  1. Thank you Annemarie for serving up so much food for thought, such good advice, and in-depth examples of how to empower one's self. THIS is how we make October meaningful!!! Please say hello to your Mom for me.

    Much love and gratitude,

    Karen XOXO

    1. TEN days to respond to you.... That's how distracted I am and have been. Sending so much love your way, my dearest Karen.


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