Hello, everyone, and welcome to the June issue of CONQUER: the patient voice!
We hope you are remaining safe and healthy as we continue to see a reduction in the incidence of COVID-19 nationally. This has been a year and a half of scary times. For cancer, however, there is no vacation—never has been and never will be. So, we bring you some information to educate and empower you, as you or your loved one continues with their cancer journey.
We have several interesting patient stories to share with you. One is about a woman who was diagnosed with brain cancer (astrocytoma) as a child, and then as an adult was diagnosed with (thankfully) a benign brain tumor (meningioma). The author describes what those 2 experiences were like, comparing a child’s journey to that of an adult’s, and the progress that has been made in brain surgery and imaging over the past 3 decades.
Another patient story is from a woman who as a 23-year-old mother was diagnosed with head and neck cancer, which has poor survival and is associated with many issues that directly affect one’s quality of life. Her mantra, however, is “staying positive, with purpose.” I love that saying!
We also have a story of a patient with chronic lymphocytic leukemia, a type of blood cancer. He provides great advice regarding the value of patient empowerment, having an advocate, being open with others, and learning as much as you can from credible sources.
We know from research that most people will contract HPV infection in their lifetimes through sexual activity (intercourse or oral sex), and in most cases, the body can “clear” this virus on its own. However, in some people, the body is not able to do so, and these individuals are at high risk of later getting cancer caused by HPV infection, including cervical cancer or head and neck cancer. These cancers can be prevented by the HPV vaccine. Therefore, there is value in talking with your children’s pediatrician about vaccination against HPV infection.
We hope that one day there will be vaccines against all cancers, and perhaps even one “giant” vaccine that will be given to young people that will put cancer in the “preventable diseases” chapter of medicine. Read this article to learn about HPV infection and why we should pay attention to it now, to prevent cancer later.
There is also an article about “bedside advocacy,” a first in a series of articles from a woman who provides us insight about being a family member advocate at the hospital and beyond. She candidly shares her experience in this role for her husband.
And speaking of family members, we have a story about a mother who died of cancer, and her request to her daughter to use this devastating loss for good. The daughter’s work is truly her mother’s legacy: as a result of her death, her daughter now has a new purpose. And when purpose and passion come together, extraordinary things can happen.
Finally, I will end with the article that tells us the history of the cancer survivorship movement: when did it really begin, what resources are available to cancer survivors today, and where will the future take us as long-term cancer survivors like myself—29 years and counting.
Thankfully, gone are the days that there was only one goal of cancer treatment—to survive the disease and the treatments we received. Today, quality of life must be a priority goal as well, and I hope that newly diagnosed patients with cancer are also able to remain on track with their lives during and after treatment.