Issue Introductions

We All Want NED: No Evidence of Disease

In her introduction to the August issue of CONQUER magazine, Lillie Shockney highlights the benefits of the HPV vaccine, a young patient’s frustrations with her care team, dealing with stage IV cancer, and achieving the desired NED: no evidence of disease.
August 2022 Vol 8 No 4
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
University Distinguished Service Professor of Breast Cancer,
Professor of Surgery, Johns Hopkins University School of Medicine
Co-Developer of Work Stride—Managing Cancer at Work
Johns Hopkins Healthcare Solutions

Hello, everyone! I hope you are enjoying some time outdoors this summer while continuing to be safe and healthy. This issue of CONQUER: the patient voice has information that I know you will want to share with others. Here are some highlights.

Read about the journey of a patient diagnosed with anal cancer, and why it is so important for young people to get the HPV vaccine. It is rare to have an effective way to prevent cancer, but this vaccine truly does just that. The HPV vaccine can prevent nearly all anal cancers in men and women, cervical cancer in women, and almost one-third (28%) of head and neck cancers in men.

Another patient tells about his experience with metastatic lung cancer, and how it changed his philosophy about life for the better.

Young women with advanced (stage IV) breast cancer have many struggles, beginning with the reality that metastatic disease will likely be their cause of death. A young patient with this diagnosis describes her frustrations with her care team failing to treat her as a person, not just as a person with stage IV breast cancer. Her story is sad, so here is a special message for her.

Telling your care team your life goals is very important. It doesn’t mean these can all be fulfilled, but an alternative way of achieving those goals may often be achieved. In a pregnant woman with stage IV breast cancer whose cancer cells are ER-positive, a baby in utero would feed these cells like fertilizer, making it difficult for you to survive and become a mother. This is an ethical question that experts have been struggling with for years. But new treatments are available for young women with advanced breast cancer, so getting a second opinion at an academic institution is advisable. Or joining a clinical trial for patients with your diagnosis.

You may not be aware of great resources for young women with stage IV disease, including Living Beyond Breast Cancer, Young Survival Coalition, National Metastatic Breast Cancer Network, METAvivor, and the Metastatic Breast Cancer Alliance. I hope you find joy in each day, focus on what you can do, and get a second opinion. Take care, dear!

We have an interesting article on survivorship. NED, or no evidence of disease, is what we all want to have, including me, having just reached my 30 years as a cancer survivor. We all want to live with NED, sleep with NED, and keep it in our lives forever. Learn how this survivor reached his mental healing and the importance of finding passion in life after cancer.

Precision medicine isn’t new, and yet not all patients who could benefit from it are receiving it. It requires genomic and genetic testing to determine a treatment specific to your cancer cells. Read this article from a daughter whose mother didn’t have these tests and thus didn’t receive customized treatment that might have helped her.

COVID-19 is here to stay, and it continues to morph into new variants. An article by a palliative care nurse provides insight into the challenges of not being able to see her patients’ faces, thus losing the ability to read a patient’s emotions and what is on that patient’s mind.

Telehealth visits enable us to see patients’ faces, but not to hold their hands; a necessary tradeoff. This means you should speak up at every visit and tell your providers what worries you and your hopes. Always optimize your time with them. Always: we are not always good at reading someone’s mind.

Enjoy the rest of summer, be healthy, and continue to share this journal with others who may benefit from these stories.

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Last modified: August 22, 2022

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