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Summoning a Healthy Summer Through Survivorship

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

Welcome to our newest issue of CONQUER! Now that summer is here, I hope you are getting outdoors, enjoying fresh air, and spending time with family and friends. Here is a quick recap of the main topics in this issue.

We greatly value receiving patient stories, which provide a key perspective on how patients choose to tackle cancer. One story is from a person diagnosed with lymphoma, who saw chemotherapy as a friend and an enemy and used faith to sustain her through her journey. Another story is from a nurse who was diagnosed with brain cancer. She made a decision to stop playing the mental game of “what ifs” so that she could enjoy her life, which she described as “living in the now.” She is currently in the short-term survivorship phase, getting frequent scans to ensure she has no evidence of disease (NED). I wish her a long-term NED, as she progresses into long-term survivorship care.

A third story is by the man who founded the National Prostate Cancer Awareness Foundation in 2014 and the Prostate Cancer Coach in 2018. He founded these after having prostate cancer, twice. What was lacking in his care became the catalyst for his helping other patients with prostate cancer. If you or your friend has been diagnosed, read about how to find these organizations.

Another story comes from a cancer survivor who is a biologist and wanted to access his genomic data. When his cancer center said it was not obligated to provide that, he took the reins in his hands so he could participate in the decision-making about his treatments. Despite having stage IV cancer, he chose aggressive, experimental treatment instead of palliative care, which only preserves quality of life. Read this story to find out how he used his experience to create a way for other patients to access their data to identify new treatment options.

In April 2019, the FDA released information regarding breast implants that can, in some cases, cause a rare form of lymphoma. Among the thousands of patients I have taken care of over a 45-year period, I have never seen this happen. Still, it is important to inform patients and consumers about it. This doesn’t mean all women with implants must get them removed and replaced with new ones. This article explains which implants are not safe and what are the symptoms that need reporting. The first step is to find out what kind yours is—smooth or textured. You should also know, and I hope you already do, that implants do not come with a lifetime warranty. On average, they spontaneously rupture not related to anything you do, and need to be replaced.

The article on genetic testing is a hot topic, because many new treatments are based on the results of genetic testing. Testing shouldn’t happen in a vacuum, though. Counseling should happen first. This article will help you understand how the results can influence cancer treatment decisions.

I also wrote an article for this issue about dealing with metastatic breast cancer and teenagers in your family. Given that this is my clinical specialty, I wanted to provide some insight into how stage IV breast cancer of a mother can affect her teenage children. All too often, when such a serious life-threatening crisis hits, teens are graduated into being treated as young adults.

We have an article from a navigator who provides an interesting perspective of how patients and their family members talk (or don’t) about cancer.

There you have it! I am confident that you will find some treasures in this issue that you will be able to apply to your own cancer journey or share with someone else who is dealing with something similar.

Take care. Be well. And remember—sunscreen! Enjoy summer!