Joanne Simmers: Self Advocacy In Motion

Joanne Simmers

In January 2020, I was diagnosed with stage 4 colon cancer at the age of 37.  To say it was a shock is a complete understatement – I had been visiting doctors since the birth of my first daughter 4 years earlier with symptoms that were brushed off as being a new mom.  In retrospect, these symptoms all pointed towards colon cancer. 

I was told I was inoperable and incurable and proceeded to start aggressive chemotherapy.  After 10 rounds, I had a remarkable response and was approved for surgery.  In October of 2020, I had a total proctocolectomy. Unfortunately, during that surgery, additional metastases were found, and what I thought would be my treatment plan fell apart – I was doomed to have just more chemotherapy. I felt completely lost and alone.  

I was sharing these feelings with another CRC patient, and she told me about the Colorectal Cancer Resource & Action Network or CCRAN and Filomena.  She urged me to contact her right away.  I was hesitant but sent off an email anyway.  Filomena responded immediately and set up a call for the next day.  That first call with CCRAN, hearing Filomena’s positive, reassuring voice on the other end, gave me information I desperately needed that was not provided to me by my cancer centre. In the 10 months that have followed since that first phone call, I’ve been able to connect with Filomena when my treatment plan has had to change again and was able to push for surgical options when my doctors told me there were none.  CCRAN’s newsletters, research updates, online support group meetings and patient education sessions have filled a void for me and have given me knowledge I didn’t have before to advocate for myself.  I can’t tell you how important a tool that has become to me – to be able to advocate for myself. Self advocacy in cancer is critically important. It means being able to move forward in an informed, confident and competent manner so that you can access treatments to keep you thriving. Especially when you have little ones depending on you.

When I am connected to other CRC patients, I strongly recommend they reach out to CCRAN as soon as possible, especially when they’ve been given few options by their medical team. 

Joanne Simmers

Thriving Stage IV Patient