ONWARD!!
Jo Lynn Collins
It will be 7 years next month since my diagnosis of Stage 4 Metastatic Breast Cancer. Median life expectancy is around 3 years, and it never escapes my attention how fortunate I am to have lived beyond those statistics. That being said, the numbers are a bit outdated and don’t accurately reflect the changing landscape of new drugs. Some folks with MBC are living a lot longer because of these medications and their exceptional responses to evolving treatment protocols. Research matters! Don’t ever doubt for a moment it doesn’t. Support it as if your life, or someone’s life you value, depends on it.
I’m still here only because I’ve had some above average responses to treatment – nothing overly remarkable or anywhere close to putting me in that coveted spot of being NED (No Evidence of Disease) or even considered “chronic” instead of incurable by some. I’ve not been fortunate enough to get a durable complete response, but I’m definitely more lucky than many of my friends and peers who have died within the predicted statistical timeline. I don’t take that lightly or for granted.
Tomorrow, I’ll be starting my 5th line of treatment, Xeloda. It is an oral cytotoxic chemotherapy, meaning it is similar to IV infusion drugs but in a convenient pill form instead. This med has a potential plethora of unpleasant side effects I’m already dreading.
In the bigger picture, this means I’ve had 4 different anti-cancer drug combinations fail to keep the disease from progressing. It’s active and spreading. The cancer has also become what is known as “endocrine-refractory,” meaning the very drugs that are designed to treat the disease based on its current characteristics are no longer effective. I’m also now considered “heavily-pretreated” in terms of how many drugs have already been used and how many are left to try. Neither of these are favorable scenarios, nor is the prognosis great when this occurs.
This is why I went to MD Anderson to seek an opinion with a specialist in my type of disease and consult with a review team to look for a promising clinical trial. There have been a few decent matches, but the time and financial toxicity of participation is a significant burden and barrier to patient access. (Yep, this will be an area of advocacy I address moving “onward” in 2026!)
I’m not sharing any of this for sympathy. I’m sharing for education. These are conversations we often tend to avoid, but we shouldn’t. They’re beneficial – not just for our own families and friends to better understand but for greater awareness in the general population. A breast cancer diagnosis will impact 1 in 8 women. Of those with early stage disease, 1 in 3 will progress or recur as Stage 4 metastatic. Chances are, you know someone who has died from breast cancer. It was Stage 4. I just happen to be a squeaky wheel about my diagnosis in hopes that it will help someone who comes along after me navigate this experience with a bit more information and support.
So, all of that long-windedness to say, my approach to next steps in 2026 will be focused on moving “onward.” Whether that be with new treatments or upcoming clinical trials, living life a bit differently, advocating for meaningful change, highlighting relevant issues in the MBC community, or whatever twists and turns the path ahead holds for me. The direction will be “ONWARD!”
I’m grateful for those who’ve been with me and stuck around from the beginning, those who’ve joined along the way, and those with whom I’ve yet to connect. Thank you being part of my world.
