Friday, December 12, 2014


Someone needs to clarify this for the ignorant in the room.  I'm referring to me.  That symbol in the title is not meant to be an arrow pointing to prevention of mets but rather a mathematical symbol.  In other words:

Of the two, Saving Lives is a priority, is (>) of greater importance than preventing mets.  And yes, since I'm in the latter, I feel I have the "right" to be strong in my opinion.  Although, there are likely enough researchers to address all of this simultaneously. We just need to rearrange the funding and understand how to properly distribute and prioritize.  Easier said than done. Possibly impossible to achieve.

Breast cancer is front and center at the moment as the 2014 San Antonio Breast Cancer Symposium winds down.  I've tried to follow the twitter feed (#SABCS14) but there are few advocates who are tweeting from the event this year.  I hope that changes in future years.

Last year, I followed the feed and the presentations and the press releases and tweeted what I was seeing from my home in NY.  The year before, I tag teamed with Lori, tweeting live from the sessions.  It's not easy to live tweet with a chemobrain but it's easy with a partner.  Lori is an excellent partner.  This year, I have much on my plate and I couldn't follow the stream with the regularity necessary to do justice to remote tweeting.

Instead, I'm relying on articles being written in publications, press releases from the companies who stand to make a boatload of money from the sale of a particular drug or product should the study make it through peer review to publication and/or approval by the FDA prior to peer review.  Some are skewed and some are leaving out important pieces of information.

One example is a study called IBIS which examined the long term use of tamoxifen as a preventative in high risk women. Many of the women in my own family who've not been diagnosed with cancer fall into this group.  The results were reported in the Lancet but the best write up of the results, the most thorough reporting has come from my friend Elaine Schattner in Forbes.

Bottom line, prevention of disease was observed, reduction in death was not.  Statistically insignificant but highly significant to me? The incidence of endometrial cancer (and subsequent death from same) and non-melanoma skin cancer along with a trend toward ER negative breast cancers at the 16 year mark.  I didn't read this carefully but Elaine's article is something to read slowly and carefully.  I'd say the jury should still be out on the use of tamoxifen as a preventative method.  Anyone considering this approach, in my opinion, should be carefully weighing the actual benefit (not the statistically significant benefit) against those noted (statistically insignificant findings and trends) risks.

That's not my ignorance.  I just haven't had time to digest that fully but at quick glance, I have an opinion that I would share with my loved ones, if asked.  My ignorance is in another area.  I could be hypersensitive about this.  I could be missing an entire piece of the point.  Or maybe I'm just ignorant.

These are three blurbs taken out of context from another article.

"The real question, the question that demands a real answer, is how do we stop the women and men we love from dying from this disease?"

".... the only way to save lives is to focus collaborative research on two very important areas: primary prevention of breast cancer and prevention of metastasis--or the spread of the disease to other parts of the body."

"This year, worldwide 522,000 women will die from breast cancer--isn't that a strong enough motivator to change the way we approach breast cancer research?"

I'm completely befuddled by the whole thing and I do not wish to bite the hand that feeds.  It was an invitation from the author of this article that found me in the White House.  It was the tireless push by this author that found me as a reviewer on the DoD grant panels.  It was the people I met on one of those panels that opened doors for me to meet researchers who asked me to prepare a lay abstract as the patient advocate on a research grant that I later learned was funded for one million dollars.

I'm not biting the hand but I am challenging the questions and the proposed solution.  I have spoken to many in the research community for their opinions and for clarification in the hopes that I might understand.  I'm trying to address my lack of understanding or my complete ignorance.  Bottom line, yes, I believe in prevention **if** that is indeed an achievable goal. Everything I'm hearing seems to indicate, "No."  That the best we are going to be able to do in our lifetime is continue to reduce risk but prevention is not lurking around any corner.

Am I disgusted with the incremental gains?  You bet I am.  My mom's first primary was in 1987.  Likewise, the person whose hand I'm not biting was diagnosed in 1987.  My treatment in 2006 mirrored my moms.  I've often said there's been no meaningful progress when it comes to  my own circumstances.  My mom's second primary was in 2007, shortly after I completed my active treatment.  In 2013, my mom's cancer found its way into a rib.  Although not definitive, the doctors feel this was a 20 plus year dormancy, that the metastasis was from the first cancer in 1987.  And even if they are wrong, she still passed that magical, bullshit five year mark.

I'm about to morph into Mona Lisa Vito.  (For non-fans who really need a good laugh and if you are the one person on the planet who has NOT seen My Cousin Vinny, seriously, watch it)

"So what's your PRAAHHHBLUM?"

"Would you like me to explain??"

Here's my question, my problem and an explanation of my question and my problem.

I've asked some of the preeminent researchers in the breast cancer world how prevention of metastasis equates to prevention of death.  In other words, does prevention of metastasis help those already living with metastatic disease?  I've gotten a resounding, "NO" from every single one of these people.  They are people who are studying metastasis hoping to unlock ways to prevent death and prevent metastasis.  I'm not certain if their is an overlap in the research but it was clearly stated to me, "Two completely different animals......"  Might prevention of mets equate to stopping progression of mets, thereby saving lives?  It's a stretch in their eyes, but yes, there's an outside shot that could happen.

In The Meantime, statements that challenge us to think about what we are doing to stop the deaths of our loved ones followed by suggestions that prevention of metastasis will actually help those presently sitting on death row is misleading.  To follow that by saying that worldwide, more than half a million lives will be lost this year, I wonder how any of what is proposed is going to help those half million people.  Or the half million plus who will likely die next year and the year after that, too.

I've pushed back on this before and I'll do it again.  I have skin in every part of the game.  I need to know I'm protecting my family and myself and there is a three pronged approach necessary.

  1. For my daughter, I need research on primary prevention.
  2. For myself, I need research on prevention of metastasis.
  3. FOR MY MOM (and so many of you who mean so much to me), I REALLY need dedicated research on stopping the progression of metastatic disease to SAVE LIVES while preserving a good quality of life.
Triaging those, my mom's needs are the most important of all.  Her life is the one hanging in the balance.  First we address those with the most urgent needs.  You can't fix death.  That's Game Over time and frankly, 2014 has been an awfully rough year for me.

I've watched far too many who were near and dear to me succumb to this disease over these past 12 months.  I stopped keeping a "scorecard" and I will likely remove the Gone But Not Forgotten list from the left of this blog margin and put it on a page.  The deaths came in waves this year and I couldn't keep up.  I just kept crying instead.  And then cursed and then screamed and then cried some more.

Prevent mets in me.  Please.  But first, save my mom and save my friends.

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  1. I whole-heartedly agree with you. Thank you for writing this.

    1. Thanks, Nancy and thank you for sharing this on #MetsMonday!

  2. Thank you. You very clearly made the point. I, too, have multiple wants.
    I do want prevention for my daughters. But I seriously question whether drugs that many women fail to complete their prescribed time on after breast cancer due to side effects, could really be useful as a preventative for healthy at risk women. Wouldn't they be even more unlikely to put up with side effects?
    And I am in your top triage group. I am metastatic.
    Elizabeth J.

    1. Elizabeth,
      And it IS "your" club that I know needs to quickest attention and the group that still feels like they are being used as guinea pigs. "If it helps the mets patients, let's see what use we can find for early stage disease." That's wrong on so many levels. And yes, "chemoprevention" as I saw this referred to, definitely not a fan. I don't remember the numbers (and right now, I don't have the head to find them) but the so called "number needed to treat to prevent one incidence of cancer" is what I need to see. Actually, I think that was the rant in the very next post I wrote.

      Thinking of you and everyone upon whose behalf I choose to advocate.


  3. I couldn't agree with you more. Thank you for writing such an insightful post!

    1. Thanks so much! It really doesn't require rocket science for this to make sense but it seems to be completely lost everywhere I look.....

  4. Thanks for asking the questions and helping others to understand. To me it really makes sense to first save the lives of those living with metastatic cancer and work backwards from there. Save the lives of those who have already metastasized for it is their lives that are in jeopardy , then work on a way to prevent progression and metastases and then find a way to prevent bc altogether. And stop using mbc patients as guinea pigs!

    1. Thank you, Barb. It really is common sense. It may not be the easiest to figure out but that doesn't mean we keep turning our heads in other directions. We've been turning in other directions for too long, ignoring as my friends at METAvivor say, "the elephant in the pink room" .....


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