June 19, 2015


Maybe you remember Komen invited me to a breast cancer blogger summit in February. I went to DC in March while experiencing the throes of Taxtotere side effects. Since then I've had one round of Abraxane, which should have been fine but wasn't. I've also had pneumonia for several weeks. So I'm finally getting around to blogging about my Komen experience.

I am changing my mind about Komen.

The summit began with introductions. There were eight or nine bloggers, not all of whom have actually had breast cancer but all have had some contact with it. Two of us with mets, one with triple negative disease, at least one in early stage treatment and one whose mother and father had both had breast cancer. Half white women, half African-American women. Komen marketing staff and several presenters.

Komen would like to "increase support" for

1) those living with metastatic disease

2) those in underserved populations such as poor, people of color, triple neg, etc.

3) involving more young researchers in working on breast cancer

Those are three powerful statements for Komen, especially numbers 1 and 3.

Sadly, no one really knows what number one means. A researcher who presented said that he didn't believe people with mets would benefit from more research into stage IV disease than from research into all kinds of breast cancer. This from a man who treats patients with mets! When pressed, he said that wasn't what he meant. But I heard him say it and I wish I'd recorded him. Komen has work to do in this area. We with mets just want to live our lives, and that means research into our disease. We must press this point. Loudly.

The example of a project in Chicago serving poor women showed a photo of an open sewer in a clinic where mammograms take place. Youd have thought it was a third world country, not the USA. So goal 2 is well in hand.

Goals 1 and 3 match well, if younger docs want to study mets and keep women alive longer. Either way, breast cancer needs more and newer researchers.

Yes, we met Nancy Brinker, now head of Komen global. Had dinner with the new CEO Dr. Judith Salerno. And we participated in the DC Race for the Cure.

Now to the last and least expected point. After the Race we were debriefing. Someone said she wasn't a blogger, hadn't been invited to the whole summit (but was sitting with us now, so someone invited her to join us in this most private part of our talks). She said something like, why are you so concerned about mets? What about poor women, women of color and their needs? To which I answered in some astonishment, I didn't set the agenda, Komen did. And I think it's great for Komen to give women with mets a place at the table. And I don't play mine is bigger than yours.

That was my Komen experience. I don't know who this woman was, and I don't want to name the researcher who seemed to think it was okay to develop new drugs to treat his patients but not me and thousands like me.

But the head of marketing took me out to dinner when in Seattle, and invited Dr G to join us, and included her new staff, the ED of Puget Sound Komen and another mets blogger flown here to appear in a PSA. R listened carefully, took notes, and I think we metsters do now have a place at the very large Komen table if we can sit there with open minds and without grudges. That's the biggest change I've seen in breast cancer in my 16 years from early stage to today.


  1. I think this is a concern. Your thoughts? http://www.curetoday.com/community/barbara-tako/2015/06/different-cancers-different-journeys-one-problem-with-lack-of-publics-education

  2. Barbara you raise good points. Personally books didn't help me at all, but I know they helped others. In the meanwhile, living with mets is so unlike living with early stage breast cancer that for me it's easier to relate to other late-stage cancer patients.