My Cancer Journey
“My goal was not just to live long, but to live well.”

Prepare before you walk into your doctor's office.

Typically the first doctor's visit is around an hour and routine follow-up visits are noticeably shorter. That time goes by quickly. The more I prepared beforehand, the more I got out of each visit. Doing some research about your diagnosis — even a small amount — helps you understand what your doctor is about to discuss. Coming in with written questions makes the conversation more productive. If you have time before your first appointment, a short call with the doctor's nurse can answer practical questions and orient you.

The time with your medical team is limited. Try to be ready for the discussions.

A second pair of ears.

I did not navigate any of this alone. My husband attended all major medical appointments, helped review medical information, asked questions during visits, and helped me evaluate treatment options. Having a second pair of ears in the room mattered — appointments move quickly, and what one of us missed, the other caught.

Beyond the appointments themselves, he was there during the hard parts: the wait after a biopsy, the days I had to weigh a complex decision, the stressful periods when I needed to think out loud. I could bounce ideas off him, talk through what the doctors had said, and process what I was learning. That side support was quietly comforting. I did not have to carry every question alone.

If you can, bring someone you trust into the journey with you — to listen, to ask questions, and to think alongside you.

The power of email and phone calls.

I was fortunate that some of the members of my medical team were willing to communicate with me by email and phone. When a question came up between appointments, I did not have to wait weeks for an answer — I could just send a message. That was especially valuable during the waiting periods between visits, when uncertainty has the most room to grow. If you can establish a way to communicate with your doctor or their assistant whenever questions arise, do it. It changes the experience.

Try not to carry questions alone between appointments. Find a way to ask them when they come up.

There is rarely just one path, and each has trade-offs.

Making treatment decisions can be very complex, and it is a unique experience for every cancer patient. From my point of view, finding the right path is about finding a balanced approach: one that avoids both under-treatment and over-treatment. That is not an easy task given all the uncertainties.

There are often multiple paths to consider, each with its own trade-offs and possible outcomes: recovery time, side effects, impact on daily life, long-term implications. Keep in mind that the standard of care may not be the only option for every decision. Researching your choices and asking your doctors about alternatives can open up options you might otherwise miss.

In my own case, the same kind of decision came up twice — and after a long, careful process, I chose differently each time. After my first diagnosis (Stage 0, low Oncotype score), I declined hormonal treatment because the side-effect profile did not justify the risk given my family history. A decade and two more diagnoses later — after a regional recurrence with positive lymph nodes — I chose to take another type of hormonal treatment, an aromatase inhibitor. Same kind of choice, two different answers, because the situation was different and so were the trade-offs.

As much as possible, try to be an active participant in your care. Different paths may lead to different outcomes. Understand the trade-offs and explore the ones that fit your goals.

Resources beyond the doctor's office.

When you are facing cancer, the sheer volume of information can be overwhelming. My journey taught me that professional medical advice is necessary, but it only tells part of the story. To feel prepared, I realized I needed to build my own knowledge — a way to supplement what my doctors told me with reliable, external insights. These resources were not meant to replace my team; they were tools that helped me show up at appointments equipped to ask highly specific questions and participate as an active partner in my care plan.

I relied on the foundational guides, like comprehensive books or patient resource materials, to give me a basic understanding. Next came the deeper dive into scientific literature using tools like PubMed to bypass simple explanations and read directly from published research papers and clinical trials. This was where I learned about complex concepts like genomic testing or hypofractionated radiation, enabling me to understand why certain options were considered best-case scenarios. Finally, I used the expert perspectives, drawing from specialized presentations and webinars by thought leaders in oncology (like specific surgeons or medical oncologists). These resources did not just show me what was possible; they helped translate incredibly difficult topics into digestible segments, giving me the vocabulary to talk to my own team with confidence.

Try to build some understanding of your case. If you do, it can help you participate as a true partner.