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A mother's wisdom: Be your best advocate

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120928sarah brown.jpgBy Ina Bond

My daughter, Sara Brown Musselman, was diagnosed with ovarian cancer in December 1992 at the age of 23. I want to share how vitally important it is to be an advocate for your loved one's health. MD Anderson enabled me to do that and, in my opinion, they added 15 years to her life.  

When Sara was diagnosed, surgery was done in Louisville, Ky., to remove the tumor and we were told that her cancer was stage III.  

Her local doctor gave me little hope for her survival beyond two to three years.  

I asked if we should get a second opinion. Her doctor agreed and recommended Dr. J. Taylor Wharton at MD Anderson, who was head of the Department of Gynecologic Oncology then.  

At that time, when a patient got a second opinion, the results were sent to the referring doctor -- not the patient. Therefore, we weren't aware there was a disagreement between the two pathologists, and the oncologists, as to the diagnosis.  

Because we were unaware of the difference of opinion, Sara had a second-look surgery and 10 rounds of chemotherapy when she should've had six. She had surgeries she did not need, which affected other areas of her body.

Getting answers
As her mother, I didn't want to make Sara anxious but I needed a better understanding of her cancer. In an attempt to get answers, I decided to have a conference call with Dr. Wharton, the nice doctor from MD Anderson.  

During the call, I found he had a very different prognosis for Sara. He thought she had at least 10 years to live because of the slow-growing nature of her type of ovarian tumor. This was startling news to me.  

Our local doctor and Dr. Wharton were of completely opposite opinions concerning Sara's cancer.  

To determine who was correct, I had the Louisville pathologist send Sara's slides to Massachusetts General, who I was told had the best pathologist in the country.  

Massachusetts General agreed with the doctors at MD Anderson. It turned out that Sara's tumor was a rare type called borderline ovarian tumor, or also called ovarian tumor of low malignant potential. This type of cancer, because of its slow growth rate, needs to be treated very differently than other types of cancer.  

Because of its size and rank, MD Anderson knows and understands the different nature of these rare tumors. They have the top experts in this field, such as Dr. David Gershenson, who became Sara's primary oncologist after Dr. Wharton retired.  

Treated well and respectfully
Sara went eight years with no chemo or other treatment. In the beginning, she would travel several times a year to MD Anderson for evaluation and later just visited annually. This is very different than what our local doctor had envisioned.  

Sadly, even today, most doctors don't understand many of the rare tumors. I am so thankful we were able to find the right answers at MD Anderson.

Equally important to me, the doctors at MD Anderson were always wonderfully accessible to Sara or me. They would quickly return calls, answer the simplest of questions or even just calm Sara down when she was anxious.

As Sara's mother, it was so important to me that she be treated well and with respect. We received superior medical knowledge and patient care at MD Anderson.

Thanks to the staff, Sara had nine years of stress-free living. My wonderful daughter had 17 years with us after her initial diagnosis and I credit MD Anderson, in large part, with making that happen.  

I encourage anyone with a loved one diagnosed with ovarian cancer to get several opinions and be an advocate for her. 

Resources

Making a difference in the lives of women with rare ovarian cancers (blog post by David Gershenson, M.D.)

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