BY Kathi & CJ

Welcome to the METAvivor Blog. We are excited about providing an opportunity to share and discuss issues that affect people with metastatic breast cancer in more depth. We plan to invite posts from those living with MBC, as well as from clinicians, researchers, activists, authors, and breast cancer bloggers who do not have mets themselves, but who support those who do by being ‘fearless friends,’ or who are involved in careers to extend life and/or improve quality of life for the MBC community. Far too often, individuals with MBC experience isolation, especially from the so-called breast cancer awareness culture at large. We want to change that. The only way to make real progress, to advance real awareness, is for all of us to work together.

When any of us is diagnosed with breast cancer, one of our first visceral reactions is fear. And there is a good reason for that. Close to a third of those of us who are diagnosed with invasive breast cancer will develop MBC. Even for those first diagnosed with DCIS, non-invasive breast cancer, up to 10% will develop invasive breast cancer, and that 10% will then be at a 30% risk for developing MBC. And yet, only a miniscule percentage of research funding goes toward finding effective treatment, prevention and cures for metastatic breast cancer.

Meanwhile, even though our universal gut reaction to breast cancer may acknowledge its deadliness, public perceptions about breast cancer do not reflect reality. Too many myths continue to be espoused, including the move in some medical circles to start referring to patient care for MBC as ‘chronic disease management.’ While effective treatment may manage the symptoms and spread of MBC, the chronic disease model may mislead many into thinking that it is no longer as deadly as it is. The bottom line is that there is still no cure for metastatic breast cancer. And myths continue to abound.

From our main website, METAvivor.org:

  • Myth: Research funding is well balanced for all stages of cancer.
    Reality: 90% of cancer deaths result from stage IV cancer, but only 2% of research funds are devoted to stage IV. In the case of metastatic breast cancer, 100% of deaths result from stage IV, yet still only about 2% of research funds are devoted to stage IV.
  • Myth: Metastatic breast cancer is rare.
    Reality: 30% of breast cancer patients progress to stage IV. Many more initially present with metastatic breast cancer.
  • Myth: Healthy lifestyles, timely screening and early detection prevent metastasis.
    Reality: Metastasis happens despite vigilance and precautions. Even Stage 0 and Stage I patients can and do metastasize.
  • Myth: Metastatic breast cancer is becoming a chronic disease. Fewer die every year.
    Reality: New treatments extend life for some, but survival remains elusive. The median survival after diagnosis has hovered around two-to-three years for more than two decades. And over 40,000 women and men have been dying annually since 1987.
  • Myth: Stage IV breast cancer patients are well supported by many groups.
    Reality: Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to stage IV.

Here is a link to an article by Dian M. Corneliussen-James, known as ‘CJ,’ who founded METAvivor.org, making the case for changing the breast cancer conversation — and the funding for treatment and research — to reflect these realities. 30 Percent for 30 Percent.

Whether we have mets or not, none of us can afford to feel safe or comfortable with the status quo. That 30% has included too many of our friends, and it could end up including any one of us. We hope you will join the conversation that may someday change that.

If you’d like to add your voice to this crucial conversation, please comment below, contact us at [email protected], or visit our Submissions page at Post Submissions.

~ Kathi & CJ

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