The Marginalization of the Metastatic Breast Cancer Patient

I went to a local breast cancer fundraising event. I spoke at the event and share my story. In fact, the campaign video for their yearly fundraising highlighted two women living with metastatic breast cancer, myself being one of them. I was so excited to share my truth, show the faces of MBC and highlight that breast cancer is so much more than just breasts and it is not easy. That there is no cure. I wanted to have this platform and provide education to the masses. I was proud that MBC was highlighted instead of early stage breast cancer. As we tend to be the elephant in the pink room. Seen but ignored. I felt as the video ended my goal had been met.......

But then it all fell apart.....

As it happens, after our video there was a panel of three doctors from my local community: A breast cancer surgeon, radiologist oncologist and a medical oncologist. They were asked questions of how they spoke to their breast cancer patient. The first thing that was a knife to the heart was stating that our story was "rare" that 90% of patients are curable.  It was gut wrenching that we had shared our truth and we were completely minimized.

The science part of my brain was thinking, Wow, where did you get that stat of 90%? The truth is 20-30% percent of early stages will progress to stage four. How can you say it is rare when 113 people die EVERYDAY from metastatic breast cancer????

I took a deep breath and thought, I am being too sensitive. It will get better. But then in the next breath it was stated that advance stage breast cancer can be manage like a chronic condition, like diabetes. There is NO CURE. It is terminal, there is NOTHING chronic about it.

How can you down play our stories when one women just said she is on her fourth line treatment and nothing is working???? How is that consider chronic?????

It made me realize in that moment that if our local oncology medical team can't share the truth, if after they hear two women speak the truth about MBC and they still provide misinformation and down play our lives. I can see why Metastatic Breast Cancer is not getting the recognition or funding for research that is so desperately needed.

It felt as if we were marginalized and minimized just to make other early stage breast cancer women feel better. To try to give hope by essentially telling everyone to ignore the elephant in the room is disturbing. I think you can still give hope AND give accurate statistics. AND acknowledge our plight.

I have hope. There are new medication coming down the pipes all the time. There is a shift towards more research for MBC. We are being heard more, but not enough.

BUT right now the average survival rate is 2-3 years with MBC. 113 people die daily of MBC.
20-30% early stages progress to stage four and 6-10% of breast cancer is stage four from the beginning. This is not rare and this is not chronic. We should not be swept under the rug.

When you read that breast cancer deaths are on the decline or that overall survival is at 90% that is because patients are only tracked for 5 years. If you die from BC after 5 years and 1 day you are still counted as "cured." Also, the SEER data base only records your first staging of BC so if you were initially stage 2 and then have progression to stage 4 you continue being counted as a early stage. SEER data matters. This needs to be changed.

It made me realize that I need to use my voice even more.

I am proud to be affiliate with a local organization that support women with breast cancer. I was impressed with the information on current and upcoming research that the doctors shared in their respective fields. But I was so dishearten that their message did not reflect accurate statistics and downplayed our truth, living with MBC.

If we can't get main stakeholders and providers of cancer care in our own communities to use truthful language and accurate statistics then things are never going to change.

BUT, I will not be quiet and I will continue to spread the word and say the words, that the ONLY breast cancer that kills is stage four breast cancer, also called metastatic breast cancer, also called advance stage breast cancer.

It is not chronic, this is a terminal illness AND it does not discriminate against gender or nationality.

#saytheword #dontignorestagefour #theelephantinthepinkroom #metastaticbreastcancer