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Patient Stories: “My Nurse Navigator Helped Me Understand”

gigi-family

The dreaded ‘C’ word—cancer.

It’s something you hear about from your friends and family or read about in the paper but never think about it being “your cancer.”

There I was,  taking care of business like annual physicals and mammograms.

There was no history of breast cancer in the family, and I had no high risk factors for breast cancer, so no worries.

Then the report came that stated, “There is an area on your mammogram for which I recommend you return for additional imaging.” So I returned for further films.

A biopsy was done to have an accurate diagnosis, it came back revealing cancer.

“Explore."

Now I had to use the “C” word for real.

My husband and I met with the surgeon the next day to make a tentative plan to take care of my cancer. When we left the office I felt very assured that I was in the best hands and had a plan for my cancer.

I was fairly confident at this point, after all I was a cancer nurse for over 40 years and dealt with many breast cancer patients. I thought I knew the ups and downs of this experience.

Then I realized I was the patient and not the nurse. There were many days it was hard to separate the two roles and, in fact, I learned I knew very little about breast cancer today. It was nothing like it was 30 years ago. We have so many more options today and better outcomes than we have ever had in the past.

My biggest fear was if the cancer would spread to other parts of my body. Was I going to die? What treatment would be done? I dreaded the chemo.

The hardest part was telling my family. I had so many fears and concerns for my husband and three children. At this point, I could not make those fears go away. We had to get more answers to move beyond those initial fears.

Fortunately, my daughter is a nurse who worked with children with cancer so she understood much of the language and was there at each appointment, as was my husband.

A lumpectomy and sentinel lymph node biopsy was scheduled with possible Mammosite radiation to follow. They spoke of sentinel nodes, injections around nipple, mammosite radiation! What did any of this mean?

I then called Betsy Booth, an oncology nurse navigator. I had the fortune of being friends with Betsy prior to being diagnosed with cancer and knew what her role was at Baylor Regional Medical Center at Plano in working with any cancer patients. I knew she would be able to answer my questions. I said “come quick, I need help in understanding this new vocabulary.”

We had a great visit, then I better understood our plan. I got my hug, and then we were off to begin the journey.

Two days later I had a lumpectomy, negative nodes and no problems. About 10 days later a catheter was inserted in my affected breast so that I could receive Mammosite radiation twice a day for five days. The catheter was removed, and a long hot shower followed.

Then I took a visit to my medical oncologist, and the treatment plan was Arimidex for five years. There were some side effects but they weren’t too bad.

On follow up mammograms, MRI’s and other tests Betsy was never far away for the pre jitters and results.

This has been a journey with lots of love, humor and support along the way.

I got a look from a patient’s perspective instead of a nurse. I had a very easy journey but the patients I have met along the way had given me much insight to the many sides of breast cancer.

I am now a Reach to Recovery volunteer, which gives me the opportunity to assist newly diagnosed breast cancer patients. The patients are very grateful for our visits. We encourage patients that we are survivors and with our new friends at our side we will indeed live to tell the tale.

Education empowers us to better understand our cancer and base our decisions on that knowledge. The fact that we are surrounded by the best medical team that will lead the way is “the best”.

This blog post was contributed by Gigi Steele, a retired Oncology Nurse, diagnosed and treated for breast cancer at Baylor Plano in June 2008.

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Patient Stories: “My Nurse Navigator Helped Me Understand”