The Impact of Advocacy: Reflecting on an MBC Research Conference

It was Labor Day weekend, and I was sitting in the Salt Lake City airport after 3 nights in a beautiful hotel in Deer Valley. The green mountains and fresh air had their benefits for a short time, while walking back and forth from the hotel to the conference spaces.

Advocating for MBC research funding

Here, over 200 researchers, practitioners, scientists, and advocates met for a few days to discuss metastatic breast cancer (MBC) research. I needed this time to remind myself of my reasons for advocating for more funding for MBC research.

I consider myself a breast cancer patient advocate. I am a stage 3 estrogen receptor-positive (ER+) breast cancer survivor and ally for the MBC community.

My breast cancer diagnosis story

I know the raw statistics, the risk of recurrence in early-stage breast cancer, and the risks that I personally have after being diagnosed with a high-grade tumor that carried the most common subtype of breast cancer at 39 years old.

It has been 10 years since my diagnosis, and I now continue taking the aromatase inhibitor that I was first prescribed for 5 years. Then, 5 years became 10, and now we are adding more. I will take this drug as long as I tolerate it, which can cause loss of bone density to the point of osteoporosis.

Despite recent advancements, the pace is still slow

Advancements in research are equipping oncologists with more agile treatments for breast cancer in early-stage patients, and progress is being made in treating specific subtypes of MBC. Still, despite recent advancements, the pace of emerging data and new effective treatments remains too slow.

I sit in the conference room full of other patient advocates and cancer researchers to learn about new and novel research being done to advance understanding of how breast cancer moves from the primary site to other body parts.

I have immense empathy for the many people in this room who were told by an oncologist they have metastatic breast cancer. They didn't do anything different than any other breast cancer patient. They went through the standard treatment and maybe went back to living their life, hoping it was just a bump in the road. Or they were less fortunate and diagnosed with stage 4 breast cancer from the onset, called de novo MBC.

Either way, MBC patients found themselves in a club they never wanted to join, and they were here to express the importance of their lives to the people at the forefront of impactful research.

Listening to cancer researchers

We listened to researchers talk about cell biology, cell metabolism, and the ability of cancer cells to remain dormant for many years. The tricky and intelligent cancer cells find a way to "wake up" and begin to grow again in other organs. The scientists ponder questions such as:

• Is it due to the tumor microenvironment?
• Is it because a cancer cell can develop mutations in the DNA and a flawed messaging system?
• Is the nucleus of the cell to blame or the mitochondria?

There are so many moving parts, and I sit in this room in awe, listening to these discussions. The many factors that must function and work properly throughout every cell in our body are mind-boggling.

Reviewing scientific posters

We also reviewed scientific posters, asked questions about the science, and allowed the young investigators to speak to us in terms we could understand. This helps them develop lay abstracts for the grant proposals, which investigators spend countless hours writing to be reviewed by peer review panels that determine if their brilliant ideas and potential impact are worthy enough for grant funding.

The process can be long and arduous. Researchers learn with each failed or successful grant proposal. The most impactful research is reviewed and published in respectable scientific journals.

My hopes after the MBC conference

I leave the conference hoping that fellow patient advocates will remain stable long enough to see the next significant drug discovery or clinical trial that might help them gain more time with a decent quality of life. The reality is that some of us will not be at the next meeting. This makes me sad.

I leave Utah hoping that the voices of patient advocates impacted a researcher in the room and one of them, if not all, learned something non-scientific to take back to their labs to improve their science. I leave with a whole heart.