By Glenna Murdock, RN, contributor
October 15, 2010 - In the arena of breast cancer advocacy, Lillie Shockney, RN, BS, MAS, CBCN, CBPN-C, administrative director, Johns Hopkins Avon Foundation Breast Center, Baltimore, is a true crusader, fighting for compassionate care for breast cancer patients and education about the disease for all women. No single descriptor, however, can do justice to Shockney’s work and achievements.
Lillie Shockney, RN, BS, MAS, CBCN, CBPN-C, administrative director, Johns Hopkins Avon Foundation Breast Center, is a frequent author, speaker and crusader for breast health and breast cancer patients.
Shockney joined Johns Hopkins in 1983. In the ensuing years her job titles have become more prestigious and her responsibilities have grown, as has her passion for breast health and breast cancer care. She has authored 13 books, received nearly three dozen national awards and traveled the world for speaking engagements.
But she is still in the trenches, face to face with newly diagnosed patients: explaining, educating, encouraging, allaying fears and delivering hope.
A two-time breast cancer survivor, Shockney knows firsthand the fear that comes with a breast cancer diagnosis. She wants those who are newly diagnosed to leave the hospital with a sense of peace and empowerment -- even on the day they first hear the devastating news.
It has been 18 years since Shockney's first mastectomy, an experience that opened her eyes to the fact that women needed and deserved to be better prepared for every aspect of the arduous path that is breast cancer. Although she was a nurse, she was terrified by common events that occur post-operatively because she hadn’t been told to expect them.
Breast cancer patients treated at Hopkins today are informed of each small step in every procedure, as well as what side effects they might experience from every drug or treatment. There is always a nurse navigator available to them to answer questions and support them in any way they need.
"I want the patient’s experience to be the least physically and emotionally traumatic that we can make it," Shockney said. "I can’t do anything about the cancer diagnosis, but I can make her treatment experience a bump in the road instead of a derailment."
Each patient at Hopkins is paired with a trained survivor volunteer who is, as nearly as possible, her mirror image in body type, diagnosis and treatment.
"Seeing someone like herself who has been through the same treatment, has completed it and is doing well gives the new patient a vision of hope," Shockney said. "This is true even for patients with metastatic disease. There is no cure for them; they will always be in treatment, but they can see a similar survivor volunteer as a model for living in harmony with the disease, rather than one dying from it."
The passion she has for improving the experience of breast cancer patients and for promoting breast health has ignited a fire of evangelism in Shockney that has gone global. Already well connected professionally, she is constantly networking, which opens doors for her in unlikely places.
Of late, she has taken her message to Arabic countries where cultural mores dictate that even breast self-examination is unacceptable.
"There is a very high incidence of breast cancer in Arabic countries and is, in fact, the number one killer of women in those areas," Shockney explained. "The majority are diagnosed in their 30s and there is an 80 percent mortality rate in the first year following diagnosis because metastasis has already occurred. Women’s health has not been important there because women are valued primarily for reproduction. We are trying to impress upon the men that if they don’t take care of their women, women will become extinct.”
When Shockney visits imaging centers in these countries, she sees more importance placed on the imaging and surgical technique than on the patient, whose biopsies are done without local anesthesia. She is present during biopsies to explain the necessity of anesthesia, in addition to how and why the patient is supported before, during and after the biopsy. She also gives speeches to audiences of physicians.
"My speeches," she said, "are aimed at educating physicians about the importance of patients having a navigator to help them understand each portion of the treatment, that they should be informed as to treatment options and that they should participate in making the choice—all the things we do at Hopkins.”
"During a recent speech, I scanned my audience of largely Arab males and questioned whether anything I was saying would be met with acceptance. When I finished, not only did everyone applaud enthusiastically, nine of the doctors gave me a standing ovation. I come back from these trips with a great sense of fulfillment, knowing I am making some headway."
Constantly on the move, Shockney has learned to operate on very little sleep. In addition to frequent overnight cross-country speaking engagements, she answers about 200 emails daily from all over the world sent to a Web site she personally designed and launched; she conducts several retreats each year for breast cancer survivors, including two just for those with metastatic disease; she organizes BreastivalsTM to promote breast health for young women on college campuses, and much more.
"I do feel incredibly driven to do this work," Shockney admitted. "I want to ease the physical and emotional hurt of all breast cancer patients — and I want my granddaughter to live in a world where breast cancer has been eradicated in the same way polio and smallpox have been."
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