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?
Ginny
MBCN board member
It was so wonderful to meet you ladies at C4YW. I felt like I was wandering aimlessly through that expo center, desperately searching for others wearing the purple beads signifying metastatic disease. It was such a relief to see you there, talk to you, and know you understand what I am going through. Thank you for all you do to advocate for us!
I was not able to attend the conference but I understand that it was a wonderful and inspiring conference. Additionally, I was told that there was an excellent panel discussion. Who were the panelists?
Is it possible to access recordings from the conference?
The organizers of the C4YW conference said that videos would be available. However, we haven’t gotten any notification that they are ready yet. I guess you just have to keep checking at c4yw.org. As MBCN members, we were busy staffing our booth and speaking to participants, so unfortunately were unable to attend many sessions.
33 y/o mother of 13 month twin boys among other proud roles (as wife, daughter, sister, aunt, health care professional. . etc.); diagnosed w/breast cancer @ 32 when my boys were 5 months old; dx w/right bc 8/3/11, bilateral bc 8/9/11, & MBC 8/12/11. I get it. . . (Your blog post) It was wonderful meeting a few of you @ the conference. Keep up the good work! JLSM
How is the message from MBCN any different from the one from Komen, when Komen is a sponsor of MBCN? Komen also sponsors many of the MBCN conferences.