Joyce Watkins King and the Unknown Primary: When Diagnosis Isn't Simple

Phyllis Johnson Health Guide
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    Joyce Watkins King has a story to tell.  It’s not the usual breast cancer story.  In fact, her story illustrates why pink October’s message of early detection is more complicated than it sounds.  

     

    In late February 2012, Joyce, an artist in Raleigh, North Carolina, noticed a sore, moveable lump under her arm.  Mindful of a family history of breast cancer, she checked with her doctor.  She had had a similar lump tested five years earlier that proved to be benign, so when her doctor told her that a sore lump is usually a good sign, she was reassured.  Her doctor recommended that they watch the lump to see if it went away, but when it just grew larger and more sore, her doctor sent her to a surgeon.

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    When the surgeon removed the lump, the pathology report revealed that she had cancer.  However, the pathologist was unable to determine the type of cancer.  The doctors felt that Joyce’s cancer could have started almost anywhere in her body and spread to her lymph nodes.  This situation is known in the cancer world as an “unknown primary.”

     

    The reason an unknown primary can be especially dangerous is that different chemotherapy drugs are used for different types of cancer.  Making an inaccurate guess about the type of cancer could cost Joyce her life.  From late April to early June, Joyce underwent tests to try to determine the type of cancer that had caused her lump.  Finally, a breast MRI found two tiny lumps in the upper right quadrant of her breast.  Just two and eight millimeters, one of these tumors was the primary that had sent out the cancer cells causing the 1.2 centimeter lump under her arm.

     

    So the good news was that treatment could begin with the correct drugs for breast cancer.  The bad news was that months had passed, and the pathology report showed that the tumors were triple negative breast cancer, an aggressive form of breast cancer that responds best to chemotherapy and for which other drugs like Tamoxifen or Herceptin are useless.  Despite the routine screening mammogram Joyce had six months before she found the lump under her arm, Joyce would not be a symbol of the benefits of early detection.

     

    The next pages of Joyce’s story will sound familiar to other breast cancer patients and their families.  Combo chemo in the form of Taxotere, Adriamycin, and Cytoxan took their toll with nausea and fatigue.  Joyce fought back with acupuncture, art, prayer, and a fantastic support team of family, church members, and friends.  She used the website CaringBridge to let people know what was happening and how they could help with rides to the doctor and meals.  She became known for the stylish way she wore hats and scarves after she lost her hair.  An article in a Raleigh magazine shows her in a fedora in front of her art materials.

     

    By the fourth treatment the tumors were gone!  Fortunately, her surgeons had used titanium markers, so that when it was time for surgery in November, she was able to have a lumpectomy instead of a mastectomy.  Even though the tumors were no longer visible, it was important to get clean margins in the area where the tumor started.  

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    The pathology report came back with some surprising news.  Joyce’s cancer was not triple negative.  It was Her2 positive.  During the original diagnostic process, when no one knew Joyce had breast cancer, somehow the Her2 status had not been checked.  The triple negative diagnosis was an error.  While Her2 positive tumors also tend to be aggressive, like triple negative ones, there are more treatment options for them, such as  targeted therapies like Herceptin.  This part of the pathology report was good news.

     

    However, eight of the fifteen lymph nodes the doctors removed during surgery showed signs of cancer, which led to the next set of difficult decisions.  The original treatment plan called for radiation following the chemo, then no more treatment.  There are no follow-up treatments for triple-negative tumors.  Now Joyce’s doctors were suggesting that maybe she should have more chemo.  Joyce wasn’t so sure she wanted to do chemo again, so she decided to go for a second opinion.

     

    To Joyce’s relief, the consulting specialist did not recommend more chemo.  The new treatment plan called for the originally scheduled radiation followed by a year of Herceptin, a targeted therapy with fewer side effects than the chemos that she had taken earlier.

     

    When I talked with Joyce, she was upbeat despite some side effects like peripheral neuropathy and lymphedema.  She was looking forward to finishing Herceptin by the end of 2013.  She has great advice for anyone with a cancer diagnosis.  She recommends asking for help from family and friends and surrounding yourself with a strong support network.

     

    She also says, “Allow yourself time to do your own research.  Get a second opinion from a doctor who is not in the same network as your main doctor.”  Joyce clearly loves her doctor and the staff at her main treatment center.  However, it took a fresh set of eyes to realize that an error had been made in her original report.  

     

    Breast cancer awareness month is more than pink feather boas.  For Joyce, early detection was impossible.  The cancer had already spread to her lymph nodes before it could be seen on a mammogram or felt on a clinical exam.   But knowing that an armpit lump could be breast cancer got her to the doctor.  There she found that diagnosis isn’t always simple.  Even knowing what treatment plan to follow can be complicated.  She persisted with courage and grace.  What a wonderful example she is this October!

     

    Nimnocks, Amber.  Artist’s Spotlight:  Joyce Watkins King.  Walter: Raleigh’s Life and Soul.  Feb. 28, 2013.  http://www.waltermagazine.com/artists-spotlight-joyce-watkins-king/  Accessed Oct. 8, 2013.

Published On: October 08, 2013