By Travis Brady
When I was diagnosed with Stage 3 breast cancer, my thoughts about life after treatment didn’t exist. Staying cancer free was not the object at that point. Becoming cancer free was.
I settled into treatment that lasted almost a year. One surgery. Five months of chemo and six weeks of radiation. They hit me with two extra doses at the end because I was young and I “could take it.”
In between each phase I took a negotiated break. I negotiated this with my care team. I learned the true value of being my own advocate. The care team had a protocol to follow. No deviations unless I asked for it. Ask I did.
Between surgery and chemotherapy, I got a second opinion on the prescribed treatment plan. It turned out the second doctor I saw recommended a stronger generation chemo. I went with her recommendation because as people kept telling me at age 45 I was young to face this type of treatment. “Chemo was made for people like you,” they said – meaning people who are relatively young and healthy except for the cancer. I buckled down and got through.
Advocating for Care
When it came time for radiation, I asked for a month’s break.
“What?” was my care team’s unabashed response. They were flabbergasted. But I could see that taking breaks allowed my body to recover before being bombarded again. It was a risk, but a calculated one. Turns out, the break in treatment along with some major shifts in my diet got me through radiation with minimal burning and no scarring. A rarity.
On my last visit with my radiation oncologist, I made a smart remark about how I wouldn’t be missing him. How the daily visit to the hospital would be a distant memory.
He looked me straight in the eye and said something like, “You may be surprised. Studies show that patients ending their cancer treatment miss their doctors.”
WHAT? I thought he was crazy, and I said as much.
“No, it’s true,” he said. I’ve tried to find the study to no avail. But, what he explained was that while someone is in active treatment, they feel like they’re “fighting” their cancer. They’re doing something about it. They have appointments to keep, people to talk to and medications to take. Life doesn’t stop because of treatment, but in my case, it drastically changed.
Then, one day I woke up and there were no appointments. No one to talk to about my progress. No more doctors and clinicians to see. I was alone in my “staying cancer free.” I wouldn’t call it a depression. However, my radiologist oncologist was right. I missed him! Most of all I missed doing something active to keep my cancer at bay.
This is where technology could help.
Technology Could Help
Today, two and half years after diagnosis, I’m cancer free. But staying cancer free and changing my life style has not been easy.
I had hormone-receptor-positive breast cancer. It’s the most common kind. According to the American Cancer Society, about 2 out of every 3 cases of breast cancer are hormone receptor-positive. Pretty much all these women go through a treatment protocol like mine:
- Active treatment which could include Surgery, Chemotherapy and Radiation
- Ongoing Care
That third step is not clearly defined. My care team doesn’t have an overall name for this category, but instead tracks check-in points like my yearly mammogram, my drug therapy and my monthly Lupron shots. The comprehensive cancer center where I was treated calls their care, “compassionate” and they are. But I think they’re missing an opportunity in Ongoing Care.
The opportunity is to use technology to help us track my health indicators after active treatment is complete. By doing so, they could look at my progress while I could feel like I’m actively pursuing health.
There are many health indicators that could influence if I stay cancer free or not:
- Daily medications – Studies show sticking to my drug regime gives me longevity and less likelihood of recurrence.
- Monthly medication – This is an in-hospital injection I receive. Managing the 28-day cycle is tough while balancing schedules of work and family.
- Lymphedema – Due to the 22 lymph nodes that came out during surgery, this is something I must manage daily through exercises and compression garments. I’m supposed to get a new compression sleeve every six months. Is it time to order a new one?
- Weight – the type of cancer I had feeds off estrogen and estrogen proliferate in fat. That’s probably a very simplified version of the real analysis. My takeaway: keep my weight in-check.
- Sleep – Time and time again we see that having enough of the right kind of sleep allows our bodies to rest and repair. Everyone’s body has cancer cells. It’s just my body couldn’t fight them. Maybe getting better sleep could help.
- Cortisol – Managing stress levels figures into the equation.
- Drinking – New studies show that especially for my type of cancer less alcohol is better.
All these health indicators on my part need to be tracked. I do it mentally in every-day decisions like not having dessert, going for a walk or stopping after one glass of wine. It would be nice to have help in managing all these things. Before cancer, I had a full life. I still do. Now, my life includes this Ongoing Care piece where I essentially have no help. Sometimes after a long day, I look at my pill bottles and think, “Did I take those?”
When I see my care team for the recommended appointments, we never talk about these things. If I want to talk about them, I must bring them up. Wouldn’t it be nice if my care team had a protocol for Ongoing Care just like Diagnosis and Active Treatment that included tracking my health indicators?
Technology could help us. Now, there are pill bottle tops with embedded chips. Wouldn’t it be great if it could track when I took my medication?
Wouldn’t it be great if weekly I received a report telling me how I did with my health indicators? It might say, “Travis, you took your medication 100% of the time. Remember your Lupron injection next week. Your weight is in range. Nice job. Keep it up.”
Then, my data would be collected and sent to my care team. It would mean if I was off track, they could see. It could also mean my in-person appointments could be more worthwhile in looking at my overall health. This could be Technology-Based Ongoing Care Protocol. This to me would be true compassionate care where we could track my health and wellness to stay cancer free.
Health systems now seem to be in a conversation about “well care” vs. “sick care.” I’ve had my sick care. I now want my care team and its health system to step up. Help me stay cancer free. Technology could help. Especially if we work together to unpack the ways in which we can both get better.
My health is so much more than an annual mammogram.
About the Author
Travis Brady is a branding, marketing and communications specialist. To “pay it forward” after her breast cancer treatment, she created a blog called Grace + Ease where she shares the products, people and practices that helped her through treatment. Coming soon she’s launching a line of gifts to send to those facing cancer. A portion of proceeds benefit UNC Lineberger Cancer Support Program.