Monica's Story

My world became a blur because of cancer. But now I have hope.

I was 19 when I initially was diagnosed with cancer. It was 1992 and I had gone to the doctor by myself for a routine examination. I had a swollen lymph node in my neck that had gone undiagnosed for several months, so my doctor took an X-ray and found a big mass in my chest. I still remember my doctor saying, "That’s concerning."

From that day on things moved so quickly, with biopsies, scans and chemotherapy. Although it was scary, the treatments worked for my type of cancer — Hodgkin’s lymphoma — and I was given the all clear. Then 12 years later, during one of my follow-up scans, my doctor found something neither of us were expecting — I had a very small lump on one of my breasts. In 2004, I was diagnosed with stage 1 breast cancer and, for the second time, my world became a blur. I went straight into surgery and treatment, which worked for me again. Unfortunately, after seven years of being cancer-free I had a recurrence in 2011. Then just four years later, in 2015, another recurrence, this time stage 4 metastatic breast cancer that has spread to my bones and lungs. The gaps between each diagnosis were shorter, but each one was no less shocking than the first time.

Thankfully, over the past 20+ years, I have seen a change in the process of diagnosis and treatment, and I have become more knowledgeable. Much of the process has made strides in becoming more patient-centered. Patients are given more options and have more of a role in their care. That change is very encouraging.

Another area where real progress has been made is around access to information and resources. For me, this became really important when I was diagnosed with stage 4 metastatic breast cancer. Up until then, my treatment for my other diagnoses had been considered “routine.” However, with this diagnosis, for the first time my doctors began to discuss with me the option of clinical trials.

For many patients, clinical trials are scary because they are thought of as a “last-ditch” effort. However, I saw them as an opportunity and a way to gain access to the most progressive and innovative drugs. As a patient, clinical trials are a way to take control of your treatment, and to play a role in ensuring that you have access to the most timely and innovative therapies. I welcomed participation in the trials then, as I do today.

Still, there are always ways we can improve. As a patient, sometimes I find things move too slowly. Delays are very hard for patients, and it’s important for everyone involved with drug development and patient care to understand this. Even after being diagnosed four times, I still want things to happen right now because it’s cancer. It’s a big deal.

This is partly why I became a patient advocate. I wanted to get involved and catalyse change. I’ve been an oncology patient for more than half my life now and feel like I have so much information and I need to do something with it. Whether it has been testifying in front of the Senate Committee on Health Care Reform or telling my story at fundraisers and events with ACS-CAN, I can speak for others who can’t speak for themselves, and I can feel like I am making an impact. My hope is that with awareness comes action. When I speak at events, I often say “You’re here today and I love you for being here today, but can you take today and do something with it?”

The main lessons I share are:

1. Working as a team is the only way to tackle cancer.
We’ve got patients. We’ve got advocates. We’ve got doctors. We’ve got pharmaceuticals. We’ve got researchers. Everyone’s working on the same kind of issues and we need to find a way to bring everyone together. Together our voices are louder.

2. Find a doctor that matches where you’re at in your learning level and understanding.
You need someone who will help you through your journey in the best way possible for you. My doctors have been wonderful. Some are stronger at the patient connection side, others at understanding the latest research. All have helped me on my journey.

3. Make sure you use the nurses.
For me, the nurses have been a huge backbone of emotional support and making sure that I’ve understood things. It is your diagnosis and your treatment, so never be afraid to ask any questions or share any concerns.

4. Play your part.
The more you are able to understand about your condition and make connections the stronger you will feel. Connections can stop you feeling confused, frightened and isolated, and knowing that there is so much going on and so many others to support you can be a real help.

5. Be at the forefront.
If you and your doctor think it is right for you, take part in a clinical trial. It is not a scary process. You have control over your care. It is different, the processes are very precise, and there are things to learn, but you have your team plus the clinical team guiding you along the way.

And lastly, have hope. I think hope is huge. Hope changes your mindset to a positive one which is needed to fight your fight.

We are always available for a conversation.

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