Knowledge is Power

How one woman took control of her own recovery

by Diane Brooks, September 13, 2012


It was Monday, Jan. 30, 2012. I will never forget the afternoon I’d been waiting for the call. The voice on the other end said, “I received the results from your biopsy, and your tumor is malignant. You have mucinous carcinomas cancer, and you need to see a surgeon as soon as possible to discuss options for removing the tumor.” Whatever she said after that was a blur.

After appointments with the doctors, I learned what my next steps would be. The good news: Mucinous carcinoma is a slow-growing cancer and the survival rate is high. The bad news: My tumor was large (5.4 cm) and therefore, had to be surgically removed. I could either opt for a lumpectomy and reserve my breast, or I could have a mastectomy, which requires breast removal. I chose a mastectomy. Given the tumor’s size, I needed chemo treatments to shrink it before surgery. Yet after three treatments, along with symptoms including hair loss, dizziness and fatigue, an ultrasound showed that the tumor hadn’t shrunk. The oncologist recommended that I have a mastectomy immediately, but because the doctors seemed unsure of what would work for me, I wanted another opinion.

Why wasn’t the chemo working? At 3 a.m., I got out of bed, googled ‘mucinous carcinomas breast cancer discussion groups’ and hit pay dirt with My sisters on the discussion board were writing in from all over the world about their experiences with mucinous carcinomas. Because this cancer is rare, knowledge for treating it is limited; detection is also difficult because it often has a jelly-like feel to it and does not feel like a lump in its early stages. Even if a lump is detected, it may appear to be a benign breast lump on mammograms. For the women on the site, chemotherapy was found to be an ineffective form of treatment; however, the success of hormone treatment was prevalent. I posted details about my case and received an immediate response from “Voracious Reader,” a woman who has been a powerhouse of knowledge. She gave me questions to ask my doctors and suggested I confirm the readings from my biopsy report. Citing a 2012 study completed by a team of doctors in Japan, she said I was not alone: Chemo used before surgery on mucinous carcinoma patients hadn’t reduced their tumors.      

For the first time, I felt on top of my situation, and I was beginning to doubt the wisdom of my physicians. Why did my doctors suggest chemo treatment in the first place? Was it because they got paid more than $100,000 from my insurance company? Soon after I began looking for new care, I discovered the University of Chicago’s Oncology Department, a team of physicians who not only had 10-plus years of experience in breast cancer treatment, but also embraced current research. I immediately scheduled an appointment, got my records transferred and canceled my surgery the day before it was scheduled.

On May 4, my new doctor concluded that hormones could be effective in treating my cancer. The diagnosis was almost verbatim to what I’d learned on the discussion board. All I could do was cry sighs of relief. By June, testing showed that my tumor had, in fact, reacted to the hormones and shrunk about 2 cm in size; tests indicated the cancer hadn’t spread beyond the breast area. My doctors plan ongoing hormone treatment for about four months to continue shrinking the tumor at a cost of about $400 a month to my insurance company—and no cost to me.

Since beginning the hormone treatment, I have joined the gym and begun lifting weights, swimming and taking Zumba classes. I take my vitamins, and I’m eating lots of fruits and vegetables. I feel strong and energized again. My hair is also growing back: I’m sporting a natural buzz cut that suits me just fine.

My journey through mucinous carcinoma has taught me that you’ve got to talk it to walk it. And as I’ve talked—to my relatives and friends and to my sisters online—information has been shared that has put me on a path to recovery. My fear of cancer has become a determination to fight the disease. I thank God for protecting me through this experience—one that I have to walk through so that I can share my story with others who are at a similar crossroad.



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