Cancer: The Ugly Breakdown
July 18, 2019 – Jermaine Fenwick
A Decade of Cancer Survivorship: What Helped Me Through It
July 17, 2019 – Judy Kirchmeier
Finding My Way
July 16, 2019 – Carol Derewitz
My Decision to Have a Double Mastectomy Without Reconstruction
July 12, 2019 – Myrna Chandler Goldstein
God Carried Us Through My Son's Battle with Testicular Cancer
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Say Something: What to Do and Say When a Loved One Has Cancer
July 10, 2019 – Lori Luedtke
'Ole Blue Eyes' and MRIs: Music Soothes Pain During Cancer Treatments
July 09, 2019 – Trisha Ready
Making 'Me-Time' A Reality
July 03, 2019 – Lori Luedtke
Cancer: It's Never An Easy Journey
July 02, 2019 – Carly Flumer
Life Is for Living
June 28, 2019 – Lori Luedtke

When Beating Cancer Means Battling the System

When my oncologist wanted to start me on a standard treatment, I asked her why. She said some of her other patients had gotten it. She was basing my life on someone else’s results? This survivor decided to seek other opinions and became her own advocate.
BY Karen Peterson
PUBLISHED June 17, 2019
In April of 2017, I received a diagnosis of stage 4 metastatic triple-negative breast cancer.  I had tumors in my lungs, spine, ribs and pelvis. I was 52 years old, and just like that, I could be living my last spring.

It felt like déjà vu. I’m a childhood cancer survivor. And two years earlier I had been diagnosed with stage I breast cancer. At that time, my doctors put me on an aggressive chemotherapy regimen. I had a double mastectomy. After months of treatment, I went back to regular life.

But this time the cancer had spread significantly. My oncologist wanted to start me on a standard treatment. I asked her why and she said some of her other patients had gotten it. She was basing my life on someone else’s results?

I had been making decisions based on emotion and fear, but I wanted to become more educated. So, I read. A lot. I met with a new oncologist for a second opinion. I learned about new classes of treatment – some which target the genomic changes within a tumor and others which help the body’s immune system to fight the cancer. I learned that identifying the actual DNA changes within a tumor using genomic testing, also known as biomarker testing, can be the key to unlocking which targeted therapy or immunotherapy option might be most effective for me.

I brought this idea to my original oncologist. But she wasn’t willing to try genomic testing. She was skeptical that it would lead to a valuable treatment option for my form of cancer. She preferred trying what had been done before on her other patients. If the standard approach failed, she said, we could try genomic testing as a “Hail Mary.” But I thought if the standard failed, I might not have more time. So, I made the difficult decision to walk away from her.

I went back to my second-opinion oncologist. We decided to move forward with genomic testing. The first step, she explained, was to have a comprehensive genomic test to surface as many options as possible. Then, if the results showed I might be a candidate, I could be matched to a therapy or a clinical trial that was more specific for my disease.

My new oncologist ordered a comprehensive genomic test to sequence my tumor. The type and frequency of mutations in my results indicated that immunotherapy might work for me. Armed with that information, I was able to secure a spot in a new clinical trial.

During the days, I turned to my treatments with a renewed focus. Some nights I planned my future; others, I planned my funeral.
 
Eight weeks later, I had my first check-in. I was nervous, but I felt like science – and an informed treatment choice – were on my side.

My doctor read my results: 72% of my tumors had disappeared.

Since then, my tumors have continued to shrink. Now, over a year later, I’m almost cancer-free.

To some, the role of genomic testing in cancer treatment may still seem new. In the history of medicine, a lot of historic breakthroughs – from newborn incubators to balloon angioplasty – were rejected and even ridiculed for years before becoming accepted as standard procedure. Let’s not allow genomic testing to become one of them. I’ve heard from physicians to insurance companies that we need more evidence before all doctors recommend genomic testing as standard procedure.

Well, here I am: the evidence. Genomic testing doesn’t match patients to a therapy or clinical trial all the time, but it does sometimes. As someone who has stared down a high likelihood of dying, let me tell you: “sometimes” is plenty. “Sometimes” is another mother who gets to watch her children grow up.

Every patient with advanced stage cancer should have the option of comprehensive genomic testing. Based on my experience, I believe physicians should offer genomic testing, not as a last resort, but immediately after diagnosis of advanced cancer. Insurers should follow the lead of Medicare and cover validated comprehensive genomic testing for patients diagnosed with all types of metastatic cancer. And patients and caregivers can often be their own best advocates, knowing that when life could be measured in days, not years, every second counts.

Two years ago, I lived my “last spring.” Now, I’m going to live every day like it’s my last. Someday that will be true. But thanks to modern medicine – just not now.
Continue the conversation on CURE’s forum. >>
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