Thursday, September 5, 2013


I'm really not trying to be contrary.  I'm simply trying to seek honesty and transparency from everyone in the Big Business of Breast Cancer.  I'm AC90.  I want to see us move in a different direction.  Take a 90 degree turn.  Anderson can look at the whole picture.  My role is to be disruptive.  To seek meaningful change.

THIS is an example of perfectly crafted wording, wording that some may see as support for the Metastatic Breast Cancer Community.  It.Is.Not.  This arrived in my mailbox just before the holiday weekend.  I'm sure this will have been tweeted and shared all over the place while I was off the grid over the past several days.

I'm not going to throw the baby out with the bath water.  However, I'm also not going to sit on my hands.

I support Project Lead.  I believe in the Department of Defense Congressionally Directed Breast Cancer Research Program.

I don't think this bill is one that can be passed and on its face, I don't feel the bill is worthy of my support.  I didn't always feel that way but after reading the goals of the bill, I simply feel government funding would be more effective in other areas.

The fact that any organization that purports to have the best interests of those whose disease has already metastasized in its mission can support NBCC boggles my mind.  They are out there.  You just have to look.  You might be surprised.

Read Carefully:

"Redirect federal research toward finding the answers we need to prevent women from developing breast cancer and keep the disease from metastasizing to other parts of the body....."

The only thing that statement acknowledges is that metastasis "is the primary cause of breast cancer deaths."

Where does it say, "Stop metastasis in its tracks once the process has begun."

Where does it say, "Stop DEATH from the disease."

The answer is easy.  It Doesn't.

I have no issues with the mission of any organization as long as their goals are reasonable, their resources are spent wisely and their words can be trusted.

I have a big issue with an organization that is persistent in using double speak.

Look.  I've already explained many times that I have interests in every point along the breast cancer continuum. Prevention of disease, the work of Dr Susan Love, is of utmost importance to me.  My daughter, my nieces, an entire generation is banking on her success.

I would like some guarantee that my own disease will NEVER metastasize.  That research matters to me.  Frankly, I want to be rid of the cloud of doubt that hangs over millions of us.

However, the biggest problem in the breast cancer business, and make no mistake, it is big business, is the fact that we've done nothing to change the death rate.  NOTHING.  I have a vested interest in that research more than any other.  Many of you are living with metastatic disease and my mom is among you, a metastatic patient, a 25 year dormancy, reawakened while she was still being treated for a second cancer.

I stated in a recent post, incremental gains that are hailed as breakthroughs have done nothing to stop the deaths, to maintain quality of life, to allow long productive lives, to have a death certificate NOT say "breast cancer."

If that is among your priorities, please continue to support the efforts of METAvivor.  Please help me raise awareness of the need for proportionate funding.  It's not more money, it's a redistribution of the available funding to dedicated metastatic research.  It doesn't need to be specific to breast cancer.  I do believe the keys to stopping the progression of metastasis lie in the examination of many cancers.  Success with one will lead to success in others.

Support metastatic research.  Dedicated metastatic research.  We can solve any problem we put our minds to.

Except Death.

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  1. You know full well how important these issues are to me! Irony of ironies - while I have been removed from all NBCC email lists (read blacklisted...), THIS request for a contribution I got. And you know full well where my money goes. METASTATIC research! I'd like to see grandchildren...

    Thanks for always, always, always carrying the torch!!

    1. You know it. The torch has been in my hand since WE first met, initially in cyberspace and then, how IRONICALLY in real life at NBCC where the METAvivor trio began.

      Full circle.. or something like that...

      Love you, Lori..



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