LIGHTNING OR ENLIGHTENING??

I don't know precisely when I became a lightning rod but apparently, as the saying goes, Shit Happens.  As we approach the month of October, it seems a few things need to be mentioned.  Despite what the world would have us believe, October is not about breasts and only breasts.  Hold that thought a moment while I meander.

October, among other things, is Domestic Violence Awareness Month.  It seems the official color is white despite my mention of purple in a prior post.  The organization I mentioned uses purple.  If I want to venture into obnoxious territory, purple seems better suited.  Generally, that's the color of bruised skin.

Moving right along, the first full week in October which, in 2014, will be the 5th through 11th is Mental Illness Awareness Week.  Note the words.  It's not Mental Health but Mental Illness.  There is a difference between being mentally healthy and living with a mental illness.  Yes, there is a difference.  Ask anyone who strives to be mentally/emotionally healthy while living with someone who suffers from any type of mental illness.  I'll be going green for that week and I am once again going to bow in admiration of Brandon Marshall for displaying such courage and handling himself with such grace while being peppered with questions regarding the NFL mess.

As for the lightning rod thing, having just returned from ePatient Connections, the regulatory issues facing pharmaceutical companies which extends to medical devices are stringent.  They are in place for our protection and apparently, some companies choose to say whateverthehelltheywant about what their magical MRI can do.  Apparently, according to one such group, it can cure cancer.

Their thinking is that it can detect cancer when there is a just one single cell present and from that, we are to leap to the line of thinking that is about to be shoved down our throats during the upcoming month.  Early detection.  Caught early enough, breast cancer is curable.

Except, that's not true.  There is no data to support such hogwash and anyone who is pays attention to the needs of the metastatic community will have heard them shouting over and over again.  Anyone can metastasize regardless of the cancer stage at diagnosis.  And, 30% will.  There was an article published on September 19th (coincidentally, the 8th anniversary of my big surgery) in the American Journal of Managed Care in the area referred to as "evidence based oncology."  Titled Recurrence of Breast Cancer Years After the Initial Tumor,  I'm calling this one a must read.  Even if you aren't a science geek, it's eye opening.

Value added bonus?  There is commentary throughout by yet another person on my Highly Admired List.  That would be Dr. Patricia Ganz.  The article states fact and shares statistics to whatever extent they are available.  Dr. Ganz notes something that is rallying cry of the mets community.  We don't have an clear picture because "registries do not tract this information accurately."  Count on this to be part of what I hope to see front and center this year.  Accurate, evidence based information being shared in ways that do not create fear but rather, educate.

The only way we can stop the perpetration of the big pink machine is by speaking the truth.  These are a few truths I sent into the twitterverse and these truths which I hold to be self evident, positioned me as a lighting rod for a company trying to push their latest and greatest imaging MRI as a cure all.

To use their words:  "Our MRI technology can diagnose cancer in earliest stages that can lead to a cure."  To which I say:

• MRI is a diagnostic tool.  There is nothing in any imagining technology that can cure anything.
• Early diagnosis, while helpful in many cases, is also not helpful in a fairly high percentage of cases.  (See aforementioned 30% statement a few paragraphs up)
• Breast cancer is NOT curable.  EVER.  Doctors may use words like curative treatment but in reality, those terms are misleading.  As long as there is a chance that any one of us may recur and that chance exists in every one of us, CURE is not a word I'm comfortable using.  And, I take offense when I see a company pushing an imaging test, simultaneously claiming it can cure anything.
• Imaging sees things.  It doesn't treat things and it sure as hell doesn't cure them.  This was brought to the attention of the FDA.  The company is marketing direct to consumers and they are making untrue claims.  False advertising is one thing but when it involves anything medical, the wording is heavily regulated to stop companies from selling snake oil.
• And what about over diagnosis thanks to this AMAZING technology that can find a single cell.  I'll be impressed when the research can determine if that single cell is going to turn into a trouble maker or if it's just a wallflower.  

When I expressed my concern with the misleading tweets I was told they would never be able to enlighten me because I'm close minded.  Then, I was told that the NASA scientist who was twice nominated for the Nobel knows ALOT more about this than me.  And finally, I know nothing about their technology and periodic proactive screening can save my life.  When they saw the tweet to the FDA, I was told to get my facts and tweets straight and simultaneously admonished for twisting their words.

Well alrighty then.  Except their words are right there in their own tweets.  I storified a few of the tweets which I hesitate to publish because there are MANY others who chimed in after I was tired of playing with Storify.  Plus, there was a lively conversation about this stupidity on my personal Facebook page and I can't seem to figure out how to incorporate the Facebook comments into the Storify either.  But, if you so desire, a good sampling of what went on can be found here and that's with advance apologies to everyone who joined in on Facebook and to those who tweeted afterwards.

And to dispel the myth about lightning striking twice, in unrelated news, I was invited to attend Partnering for Cures 2014.  I am very excited about this meeting.  At the conclusion of the registration process, I had the option to tweet that I would be attending the meeting.

Somehow that led to yet another condescending remark about how Faster Cures is a sham and simply attempting to position themselves for a Nobel Prize.  I have a question that really has nothing to do with this but what the hell is up with everyone throwing around the Nobel thing?  I felt the need to respond.  Respectfully.  I do not attack.  Not in my blog posts and not in my tweets.  I stick to what I believe to be true and I share evidence.

I admire what they are doing at Faster Cures.  They are bringing all parties together for true collaboration and I responded to the person who feels quite differently than I do about Faster Cures and who was a more that a tad bit harsh in the choice of wording.  It came across with a hint of  sarcasm, "glad you're satisfied" and then asked what "direct medical benefit" have I derived from them.

I know.  Don't feed the trolls, however, this is not a troll situation.  It's simply a difference of opinion.  As the great saying goes, everyone is entitled to their own opinions but not their own facts.  The prior group was making up their own facts.  but after listening to Jonathan Cho who is responsible for the cancer.gov site give a presentation at the ePatient Connections conference, I took his words to heart and chose to use this as an olive branch moment.  I heard his displeasure and I hope, too he might respect my point of view.  I'm big on the concept of agreeing to disagree.  And thus, I replied:

That's the thing w/advocacy. I don't need "direct" personal benefit-community as whole is just as important @fastercures
— AnneMarie Ciccarella (@chemobrainfog) September 22, 2014

And yes, I mean that.  Those who choose to position themselves in advocacy roles are passionate about whole communities. It's not about me, it's about the greater good.  This is not to say there aren't plenty of times when I have "It's all about me" days but that's not the hat I wear as a self proclaimed advocate.

As for Faster Cures, I love this initiative of the Milken Institute.  One of the unique features of the Partnering for Cures annual meeting are the networking sessions.  You can request meetings with other attendees in nicely appointed private areas at agreed upon times.  Last year, it felt pretty damn good to be asked to meet with a handful of people.  It's a quick, mini brain storming session.

One of the people I spoke with was looking to launch some sort of study he hoped would help with chemobrain.  I don't recall the particulars and even if I did, it wouldn't be fair to share what he was trying to do.  The only thing I know is the elation I felt many months later when I received an email from this gentleman.  He wanted to thank me for throwing out the names of some of the people I knew who have been studying chemobrain.

When he told me he was in contact with Dr. Patricia Ganz and they were discussing ways to see if they could do a small pilot study, I was on top of the world.  I have no idea what's happening because I haven't had the chance to follow up with him, but I know I helped save him just a bit of legwork by sharing my knowledge with him.  I'm not deluded to the point where I think he would not have found a short list of names rather quickly without my help.  I may have saved him an hour or I might have saved him weeks.  But that's the whole thing.  Every moment counts because Time Equals Lives.

When we attack each other, we get nowhere fast.  And so, I was attacked.  Not once but twice in a very short period of time. With so many things happening in every other area of my life, yep, lightning rod is a good metaphor.  And damn, some of this stuff burns.

It's time to flip this around because, for starters, I'm tired of being in the midst of one commotion after another, and more importantly, when we work together, we can achieve great things.

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