Metastatic Breast Cancer Awareness

October 13th was Metastatic Breast Cancer Awareness day, we’d like to bring awareness to MBC not just one day a year, but all year long. Join us in welcoming Jen Anderson. She shares her story and thoughts below.

I’m lonely a lot.

I have Stage IV breast cancer.  Most people have no idea what that means, so I have to clarify and explain every single time I share this information with someone new.  It’s exhausting, and I (over)share with my friends and family by way of my DoTodayWell.com blog so that I spend as little time as possible dealing with cancer outside of the oncology office as I can.  I have metastatic cancer tumors in multiple places in my body which means I am terminal.  That’s the sentence I’ve developed when I need someone to understand, and I have found the terrible bluntness to be necessary to overcome all of the preconceived notions that exist about breast cancer.

Do you know when I often feel the most lonely?  It’s at the breast cancer events. The rallies, the walks, the survivor celebrations, the speeches, the balloons.  At the first event I went to as a Stage IV person, I had two choices for how to sign in at the event:

  • In memory of… : Um, no thanks.  I’m not dead.
  • Cancer free for ____ years! : Um, I’m not cancer-free.  Furthermore, no oncologist I know would ever tell any patient they are cancer-free.  So why is the breast cancer organization giving me (and the rest of the attendants) this bizarre false hope?

I can’t describe the crushing sadness that came over me as I stood at that table.
“I don’t belong.”
“No one cares about metastatic patients.”
“I am invisible in a space where I thought I would be the face of the disease.”

When we think of breast cancer survivors, we think of mostly older women wearing pink with perfectly restored breasts cheerleading, beaming, smiling about the number of years since their last treatment.

That picture is so far off from reality it brings tears to my eyes.  That is not what breast cancer looks like.

On one level Pinktober, pink ribbons, and the success of the breast cancer awareness campaigns that have been so prevalent in the past decades are endearing because we know there are dollars and attention given to breast cancer. There is much to be said about the inattention and lack of funding for other cancers, but that is another topic for another blog.  We’re talking about the breast cancer community today and how it egregiously underserves its most needy population.

You should know there is a throng of strong and vulnerable cancer thrivers who are living with cancer.  Their plight–our plight–is consciously or unconsciously hidden, smothered, or ignored by our peers.  It’s so, so, so lonely.  I was diagnosed with Stage III breast cancer at age 32, and Stage IV breast cancer at age 33.  At the time of diagnosis I had minimal family history and was in excellent health otherwise.  I am — in my opinion — the poster child for whom breast cancer organizations should be looking to serve.  Some organizations succeed in making me feel loved, empowered, and strong.  Others, unfortunately, make me feel angry, manipulated, used, and hurt.

Hashtags and social awareness campaigns such as #Don’tIgnoreStageIV, #MetsMonday, and #BCKills have evolved as an attempt to address the disconnect, and have varying levels of impact depending on the advocacy within diverse communities across the nation.  As part of my personal philosophy, I truly believe that the intentions of all people working for a charitable organization is to do the right thing.  I’m pretty good about giving the benefit of the doubt to anyone and everyone and overlooking oversights to focus on the positive contributions. However, when Peggy Isenogle of Komen Cincinnati approached me about creating a symposium to give Stage IV a stronger voice within the breast cancer community, I think I actually clapped and gave her a standing ovation while jumping up and down.  It’s that exciting to me.

It feels like a game-changer for me that someone who has time, energy and influence to extoll the contributions of Stage IV patients is willing to engage in that conversation.  I have so many ideas about how to serve the sick and the healthy men and women living with metastatic disease.  Stage IV patients are the ones who are the most intimately acquainted with breast cancer and all its facets and nuances.  Our needs are great.  This is an opportunity to match the heart: the desire to impact positive change in dealing with breast cancer with the patient who has experienced the very worst form of the disease.

This conversation could do much to address the loneliness experienced by every Stage IV breast cancer patient I know, myself included.

If you are interested in being a part of the conversation to change the perception and priorities for the breast cancer community with a stronger focus on those with metastatic disease, please contact Peggy Isenogle at: peggy@komencincinnati.org. We are planning for anyone interested in continuing this important discussion to join us for an evening of conversation and sharing on Tuesday November 10th at 6:00pm at the affiliate office.

Brad, Jen, Maren & Greta