February 28, 2012

We travelled to New Orleans this past weekend to exhibit at the C4YW (Conference for Young Women Affected by Breast Cancer).  MBCN has always attended this conference as part of our mission to reach out to all those with metastatic breast cancer, but I was a newbie, a little wary of being drowned in Pinkness, since the conference is meant for young women at all stages of breast cancer. I was pleasantly surprised.

Yes, there was more than enough pink. The guy with the pink cowboy hat, sporting a pink bra, was parading around, but mercifully we avoided him. And there were more than a few people advocating to save the boobies, move beyond boobs, keep a breast, etc, etc. And I’m sure many of the attendees don’t realize that 20-30% of them will be joining our not-so-popular club.

But, to get to the good part:  a few workshops were offered for metastatic patients and at our booth we met the most wonderful young women! We had time to hear their stories and struggles, to offer advice, to share resources and information. I feel bad enough to have been diagnosed stage IV at age 58 (the median age), but it’s sobering to meet young women with metastatic disease who say:

“I was 29 when diagnosed.”

“I was pregnant when diagnosed.”

“I have two kids, ages 3 and 1.”

They are concerned, worried, overwhelmed, but also vibrant, determined and strong.

It renewed my spirit to meet them and increased my commitment to MBCN and to advocating for more research and more answers to what causes metastases and how we stop it; to raising awareness that breast cancer is not a pretty pink cheerleading event and early detection is not the cure; and to helping all those newly diagnosed with mbc to have the information they need to make the best treatment and lifestyle choices and be their own best advocate.

To my shock, even the pink cowboy, who is a strong Komen supporter and disciple of the positive pink, early detection-mammogram message,  tweeted this on Saturday: “Because my cancer is metastatic, don’t treat me like I’m a dead man walking.”  Hey, sounds like he understands our side of the breast cancer story. Is the pink haze clearing a bit? Is the message about metastatic disease slowly getting out there?


MBCN board member

Shirley’s Update on the Komen Roundtable on Metastatic Breast Cancer

February 17, 2012

It seems like a very long time ago (prior to the Komen-Planned Parenthood controversy), but late in January, I had the pleasure of meeting nine other metastatic breast cancer patients from across the United States during a meeting at the Komen headquarters in Dallas, Texas.  Our common goal was to share with the staff of Komen the concerns and needs of metastatic breast cancer patients whom we had met along our journey.  Among us were newly diagnosed metastatic patients and others who have been living with the disease for some time.

Over a day and a half, we shared with the attentive Komen staff present in the room what it was like to live with metastatic breast cancer and what, we perceived, were the unmet needs of patients. The conversation was very frank and revealing.  We discussed how metastatic patients relate to the word “survivor;” the pink ribbon; and the awareness activities that go on each year in October.  Our full experiences were shared—including the great need for more research to find new treatments to extend life, the disparities in access to quality health care, the costs of ongoing treatments, the need for good information to make treatment decisions, and the need for appropriate support groups to help us deal with psychosocial issues.

Though there was no specific action plan formalized at the end of the meeting, I feel confident that the Komen leadership will review and discuss what was shared.  I am hopeful a plan to address the unmet needs of metastatic breast cancer patients will be developed in the future. More updates to come…

In the meantime, I made nine new friends who are amazing!

All best wishes,