For the nearly 3 million American men fighting prostate cancer, and the thousands more yet to be diagnosed, silence is not golden. Men who speak up about their disease – to their doctors, loved ones and community – can get the help they need, when they need it, and ensure their treatment plan is tailored to their needs. What’s more, they could use their voice to inspire others to be more vocal, especially about symptoms that may indicate the disease may be getting worse.
While overall prostate cancer numbers have declined, a new study from Northwestern University found an increasing number of newly diagnosed cases of prostate cancer are metastatic – meaning the cancer has spread beyond the prostate to other parts of the body. Advanced stage cancers are more difficult to treat, and fewer patients will recover or survive when their disease has progressed. Unfortunately, men with advanced disease often hesitate to speak up about the discomfort they experience. But according to Dr. William Oh, chief of the division of hematology and medical oncology at The Mount Sinai Medical Center in New York, speaking up about these warning signs is a key way men can advocate for themselves.
“During treatment, it’s important for men to speak up and share with their doctors any changes in their bodies and symptoms, even if they don’t think the changes are related to their prostate cancer,” Oh says. “As physicians, we’re working to create an environment where men feel comfortable talking about symptoms instead of feeling shame or weakness.”
Men living with advanced prostate cancer may remain silent about symptoms, such as fatigue and difficulty with daily tasks, for different reasons. Some don’t want to further burden loved ones, whereas others believe the symptoms aren’t part of their illness or that they can “tough things out.” An international survey conducted by the International Prostate Cancer Coalition found that while 99 percent of advanced prostate cancer patients experienced at least one symptom, 68 percent admitted they sometimes ignored symptoms.
“If we really want to help patients, we have to encourage them to come out and tell us exactly what’s bothering them,” Oh says. “Symptoms can alert physicians that a patient’s cancer has progressed and they need to re-evaluate treatment. Men are sometimes conditioned to be stoic and take the pain — this is counterproductive and if physicians aren’t aware, they can’t address the symptoms.”
These conversations are important, but they aren’t always easy. Here are some practical tips to help men with prostate cancer make the most of their next doctor visit:
- Prepare a list of specific questions before the appointment, so they are not forgotten.
- Keep a diary or list in a notebook any symptoms. Any changes in day-to-day life are important information for doctors to know.
- Ask a family member or loved one to come along to the doctor for support.
- Take a note pad and pen to write down key points from the conversation.
Education and communication are critical for stemming the growing number of advanced prostate cancer diagnoses. That’s the basis of the Men Who Speak Up nationwide movement, which aims to raise awareness of the symptoms of advancing prostate cancer so that men know when to speak up and take action against their disease. At MenWhoSpeakUp.com, men can get the facts about advanced prostate cancer, learn about treatment options, download resources such as a doctor discussion guide and symptom tracker, and join the dialogue about advanced prostate cancer.