To the editor: Take time to learn about breast cancer

Saturday, October 26, 2019

by Joyce Hayden

An estimated 270,000 people in the nation live with metastatic breast cancer, and I’m one of them. Metastatic cancer, better known as Stage 4, develops when cancer cells that started in one organ, such as the breast or prostate, spreads to other parts of the body.

Metastatic cancer is treatable, but it is not curable.

While every cancer diagnosis has its challenges, metastatic patients are different. We will never ring a bell and declare ourselves free from cancer. We always will be in one form of treatment or another. For us, a metastatic diagnosis is about time.

When I first noticed a lump in the early 1990s and my doctor dismissed it as a cyst and said, “…nothing to worry about,” I wish I had taken the time to ask more questions. In the years that followed when I didn’t have an annual mammogram, I wish I had taken the time to make it a priority. In the early 2000s, I wish my doctor had taken more time to listen to my concerns when I said that my breasts were changing and becoming sensitive, and when I described the lump I’ve had for quite some time.

When I was diagnosed with breast cancer in 2012, I knew something should have been done a long time ago. I underwent radiation and chemotherapy, and for five years stayed on aromatase inhibitors to stop my cancer from having a chance to develop. I was cancer-free for a short time, and I was doing great.

At the end of 2017, I developed a pesky cough that wouldn’t go away. I went to the doctor in April and had repeated tests until a chest X-ray in July showed a mass in my right bronchia, right underneath where my breast cancer had been. Further testing showed smaller tumors in the right lung, several very small, pin-sized spots in the left lung, and in the bones. A biopsy in August confirmed that it was metastatic breast cancer.

An appointment with my optometrist in October, 2018, for a vision issue revealed a tumor in my eye. The testing that followed eventually showed that my cancer had metastasized to my optic nerve, my sensory nerves, my brain stem, and the portion of my brain that controls my balance.

My cancer had spread with a vengeance.

Once again, my life was all about time. There were many long drives over the last year to Toledo for radiation and chemo and to Cleveland to see my retinal oncologist. The time spent waiting in doctors’ offices and waiting for test results. I’m now taking a unique medication for metastatic patients that helps keep my cancer in check.

While I’m still fatigued, I feel better every day, the tumor in my eye is now gone, my vision has improved a little, and I continue to live my life.

In short, I am gaining more time.

Recall the comedian Gilda Radner. She was one of the 40,000 people a year who are lost to metastatic cancer. Her cancer-patient community center, Gilda’s Club, created a program called It’s About Time, Itsabouttimemets.com. The program provides an opportunity for metastatic patients and their caregivers to share their stories, learn more about metastatic disease, and advocate for policies to protect access to care for metastatic cancer patients.

Treatment for metastatic cancer is lifelong — focusing on control of the disease and quality of life. Individuals living with metastatic cancer need support, affordable access to treatment, and unwavering hope that through better-funded research this disease can become chronic and not deadly.

If you or a loved one are dealing with advanced stages of cancer, I urge you to visit the It’s About Time website and read the stories, share your experiences, and find out how to contact your elected representative.

It is important that we educate lawmakers about the need for funding for metastatic research, and that public policies broaden access to the treatments people with metastatic cancer need. As policymakers consider proposals to address the cost of health care, we must ensure that patient access is protected, and innovation can grow.

I hope that by sharing my story, individuals might take the time to ask the questions, schedule the tests, tell their stories, and advocate.

Because in the long run, it really is all about time.

The writer lives in Oak Harbor, Ohio. October is breast cancer awareness month.

https://www.toledoblade.com/opinion/letters-to-the-editor/2019/10/26/take-time-to-learn-about-breast-cancer/stories/20191025007